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End Fatigue
Answers to Your Questions
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[Please note that new questions are now handled through Dr. T's Facebook Fan page.]
Jean H sent the following letter to us to share how her health has improved after following Dr. T's treatment approach.
Dear Dr. Teitelbaum:
Reconnecting with you via your website this year has been a blessing and joy for me. I had a personal consultation with you in 2001 and went on your treatment protocol. I was one of the success stories that you have been instrumental in creating in lives of most of those that you have touched.
I did recover more than 50% over the level of my 1993-2001 years, and have continued to experience a quality of life within the boundaries of CFIDS/FMS that you describe is possible. Joining your website has allowed me to add your Smart Q10/Pregnenolone/Calming Balance treatment options to what I have maintained over the years from the original protocol. In 2002 I did not have a physician that would follow with the prescription medications that did help, so I have been off those since mid-2002. But many of the more effective alternative supplements are with me today. Fibro-Care from TYHealth has been an ongoing supplement, and several years ago, I found Enzymatic Adrenal Stress End.
So, as you can read, you, together with the work that you so carefully and mindfully follow, have lasting effects for simple folks like myself who do not live in a medical community that even acknowledge these two diagnoses. I am prayerfully thankful for you daily, as is my little loving family who has nurtured me in the processes.
May God bless you abundantly, indeed!
Jean H
[The following comments are from a discussion on Dr. T's Facebook page that was kicked off in response to Dr. T's article "HCG — A New Pain Treatment Breakthrough?".]
Jean H sent the following letter to us to share how her health has improved after following Dr. T's treatment approach.
Dear Dr. Teitelbaum:
Reconnecting with you via your website this year has been a blessing and joy for me. I had a personal consultation with you in 2001 and went on your treatment protocol. I was one of the success stories that you have been instrumental in creating in lives of most of those that you have touched.
I did recover more than 50% over the level of my 1993-2001 years, and have continued to experience a quality of life within the boundaries of CFIDS/FMS that you describe is possible. Joining your website has allowed me to add your Smart Q10/Pregnenolone/Calming Balance treatment options to what I have maintained over the years from the original protocol. In 2002 I did not have a physician that would follow with the prescription medications that did help, so I have been off those since mid-2002. But many of the more effective alternative supplements are with me today. Fibro-Care from TYHealth has been an ongoing supplement, and several years ago, I found Enzymatic Adrenal Stress End.
So, as you can read, you, together with the work that you so carefully and mindfully follow, have lasting effects for simple folks like myself who do not live in a medical community that even acknowledge these two diagnoses. I am prayerfully thankful for you daily, as is my little loving family who has nurtured me in the processes.
May God bless you abundantly, indeed!
Jean H
Using HCG injections for weight loss, and feeling GREAT!
I have been doing HCG injections for weight loss over the last few weeks. This would be my second round of injections. I said last week to my MD that I feel great on this and I don't need to use my cortef while on it. I've also decreased my bioidentical hormone creams. It is fantastic. I asked him if there was any research about using it long term. He wasn't sure, but had had similar comments from other women he was treating. He was going to be researching it on his next trip to California where he is studying with his fellow colleagues.
All I can say is "Sign me up for a trial!" I'm on facebook with an HCG support group and I forwarded (Dr. T's) newsletter to them. Several women responded with similar results. This is very interesting.
Felt much better during pregnancies.
Verrry interesting. I felt like a different person during my pregnancies — so much better, especially during the 2nd and 3rd trimesters. I asked many of my MD's over the years what the connection could be (40 years with CFS/ME) but was told there was none significant.
Always looking for answers to this mystery I live with, so will be looking forward to seeing this.
Thank You!
Have FMS and now very interested in HCG.
I am very interested in HCG. I have had FMS since 1994. I went into remission while pregnant with twins in 2001. My pain and fatique seems to be getting worse with no help insight. I am looking for some serious help.
What is the most cost effective way to do the SHINE treatment?
Hello Dr. T,
I have been reading and studying your protocol for close to six months now. About ten months ago I was diagnosed with CFS and FM. Thanks to God I've been able to continue to work but not sure how much longer I can hold on. I work at a hospital in a research department (I'm the administrative assistant) so I've have some exposure to protocols and some really great doctors to refer to for questions. To date, at least with my research, your protocol seems to be the only one that has had proven results. My question is what would be the most cost effective way for me to receive your treatment SHINE? There are no doctors in my area that have been trained for your treatment. The options are to consult with you and your assistant via phone, email etc., or travel to a treatment center.
Hi Cindy,
Though a consult with me (which can be done by phone) or a Fibromyalgia and Fatigue Center physician using the SHINE protocol is the best way to proceed, we recognize that not everyone can afford this. This is why we provide as many free resources as we can online, such as the free CFS/FMS Symptom Analysis Program, which will tailor a treatment protocol to your case; my Facebook Fan page (where I spend as much time as I can answering questions from the community); our page to help you find a practitioner; and our page to help you find a support group. In addition, you may also find it helpful to read my article How to get CFS & Fibromyalgia Treatment at Low Cost.
Love and Blessings,
Dr. T
Is the "spit test" a reliable way to detect yeast overgrowth?
Dear Dr. T,
Do you think the spit test is a reliable way to find out if I have yeast overgrowth? I think I could have Candida but am not sure. Would it hurt to take probiotic and a natural antifungal med even if I didn't have it? Is there a test my doctor can do?
Thank you!
I don't consider the NAY test for Candida to be reliable. If someone has CFS or FMS, I find it best to simply presume that it's present and treat it. Same for most cases of chronic sinusitis or spastic colon. The probiotics and natural antifungals are safe and healthy even if no Candida is present.
Love and Blessings,
Dr. T
Dear Dr. T,
I have to tell you, I have tried so many products in the last four years for my back issues. Nothing compares to Curamin. I still can't believe how well it is working for my pain and my mood. It is unreal. I have only been taking it for 10 days and I am 90% pain free. I know you hear this all the time from reading your site, but wanted to pass my feedback on to you. I am telling everyone I know about this. It has literally changed my life!
Barry C
Dear Dr. T,
SHINE has helped me so much! It is so gradual, you don't even realize it. Nor does your family for the most part. When I look back, I couldn't keep up with my house cleaning, etc. Now I have a clean home.
I couldn't walk my dog on a daily basis and now I walk him 20 minutes a day, sometimes twice a day. I had pain every single minute of every day (although it moved around). Now I have little or no pain.
I got constant infections… UTI, sinus… and the UTI, sinus again… over and over. Now it's been a long time since I had an infection. Because I have more energy I can pay more attention to my diet and eat well most of the time. I have less hot flashes. It's all good! I have to stay on course though. That's so important, with supplements and daily sleep schedule and IV schedule.
Anyway, just wanted to say that. Staying consistent is so important. Especially with the holidays coming. I know I have to be self loving and stay on course!
Thank you Dr. Teitelbaum!
Linda C
Can testosterone make sleep apnea worse?
Dear Dr. T,
I read that testosterone can make sleep apnea worse? Have you seen that in your practice? I don't know if I have sleep apnea yet, but my mother and uncle have it and I snore. I really want to try the testosterone and see if it makes me feel better, and then I read that about apnea.
Pete J
Dear Pete,
By increasing muscle mass, testosterone may occasionally aggravate sleep apnea. But my causing fat loss, it is more likely to be helpful for apnea over time. The bottom line relates to the need to drop some weight if sleep apnea is present.
Love and Blessings,
Dr. T
WOW!!!! After 4 years of researching in New Zealand and Australia, I discovered your website recently, Dr. T. Have purchased your books and am currently trying the Energy Revitalization System. I have been diagnosed with FMS, IBS and recently ankylosing spondylitis. Yesterday was my 37th birthday and day 1 of your system — for the first time in 4 years, I am starting to feel normal again — I feel so good I could cry tears of happiness!!! In fact I am going out dancing tonight to celebrate. Thank you for your gift of knowledge and research!! Please keep educating those doctors worldwide!!!
… its doing more than helping! It is amazing! Just tried your pain tablets today — far more effective than the past 4 years of tramadol & ibuprofen!
PS: You are officially my Facebook hero!
I've experienced off-and-on flu-like symptoms for a month, without actually getting sick. Do you have any suggestions?
Dear Dr. T,
Over the past month I have experienced some off and on flu-like symptoms (sore throat, hot flashes, feverish without an actual fever, etc.). This has brought on more lack of energy, easy fatigue and overall body pain. I haven't actually "gotten sick" though. Could there be an underlying cause for this? Or just a not so great immune system trying hard to fight off a cold that hasn't fully presented? Any suggestions on how to manage these symptoms?
Dear Kristen,
In CFS we often see this with adrenal fatigue (this is the stress handler gland; see Adrenal Exhaustion). If you have CFS, this is a sign to me to add adrenal support and the immune boosting supplement ProBoost. If this doesn't get rid of it, I would look for other infections. In those without CFS/FMS, presuming a standard blood count and chemistry are OK to rule out uncommon issues, I would add vitamin C (1,000+ mg/day), ProBoost and zinc acetate lozenges (20 mg 4x day) and get good sleep. This will often knock it out. If not, I look for other causes.
Dr. T
I have often wondered if I have an adrenal deficiency. Some of your other signs you've written of, I have experienced as well. At one point I was on a cycle of Prednisone — and then a low (5mg) dose for about 9 months. That has been the only thing to give me complete relief, but I know you can't stay on it long term. Given that it takes over for the adrenals, I wondered if I had a deficiency.
I have hesitated to try any adrenal support, because I have had a lot of weird reactions to medicines/supplements that I have tried. So for the last 9 months or so, I've stuck with the few things that have worked and not given side effects — vitamin powder, D-ribose, acetyl-L carnitine, CoQ10, Imitrex (for migraines) and Depakote (for anxiety).
I would like to get past the wall I have hit and continue to improve my health. What adrenal support would you recommend? For how long/dosage? And does it tend to have side effects?
Thanks so much for your time!
Dear Kristin,
When I have a CFS patient with marked improvement on 5 mg Prednisone, I am comfortable giving them Cortef 20 mg a day which can often be used long-term safely.
Love and Blessings,
Dr. T
Dear Dr. Teitelbaum,
I have suffered from CFS for over 15 years and have followed your research and advice. I want to thank you for all that you have done to help people suffering from CFS, FMS and related debilitating conditions.
For the past 10 months, I have been receiving treatment for Dr. Charles Gant at National Integrative Health Associates in Washington, DC. Dr. Gant has been extremely helpful in helping me improve my energy and immunity and is familiar with methylation issues. The genetic testing he ordered for me revealed genetic methylation and inflammatory issues. Through his knowledge and yours on methylation defects, I have been able to greatly improve my condition and am now earning a graduate certificate in Health and Wellness Coaching at Tai Sophia Institute in Laurel, MD. I hope to help others dealing with health and wellness issues, especially those with chronic conditions.
I thank you for your dedication to your patients worldwide. I continue to follow your columns to learn as much as I can.
God bless you,
Janet G
Prednisone cured my fatigue and pain, but turned me into the Energizer Bunny. What happened?
Dear Dr. T,
Long story short. I was eventually perscribed prednisone 20 mg for two weeks. After the 3rd day it helped the reaction I was having. What I noticed more so was that the pain and fatique was gone! My head was clear. I figured it was the med and knew it was a hard drug on the body, but I took advantage of it and was like the energizer bunny, cleaned, rearranged and finished UFO's,(unfinished objects). With winter coming I knew I would be down for the season, and wanted everything in order before this happened. Ok, so story not so short. What is in the prednisone that made me feel so good? I wish the side effects weren't so bad on the body :-(
Dear Sharon,
We talk alot about adrenal fatigue (see The Adrenal Gland) and the prednisone is treating this. The bad news? 20 mg a day of prednisone would get pretty toxic with extended use (usually months — not weeks). The good news? Most people need nowhere near that dose to get optimal benefits for adrenal support, and the cortef 20 mg a day (like 4 mg/d of prednisone) has been safely used long term — and you may even need a lower dose. Don't expect to get the "energizer bunny" stimulant effect (fun for a while but not healthy long term), but rather to feel healthy energy. If the lower dose does not work, then the prednisone may have been acting as an anti-inflammatory. So your doctor may want to check a sed rate blood test (when NOT on the prednisone) and look for causes of the inflammation (e.g., autoimmune disease and infections). Then the herbal anti-inflammatories like Curamin, End Pain and fish oil may also help.
Dr. T
I'm considering taking bio-identical testosterone to treat low hormone levels, but concerned it will worsen my hair loss. What is your advice?
Dear Dr. T,
I was reading through your article on testosterone and I see there can be benefits for women. I am 58 years old and I had a total hysterectomy at 41. My hormones were just tested and they are all low (thyroid too), even though I am taking thyroid medication.
My worry: I had been using things like saw palmetto because I was told I had androgenetic alopecia. This blocks DHT and androgens. If I now add testosterone, won't that put the DHT and androgens right back where they were and cause me to lose more hair?
I'm thinking about starting bio-identicals, but I have already lost 65% of my hair and it is all finer and lifeless. I'm really concerned and don't want to start anything that may make it worse.
Dear Sue,
You are correct that adding testosterone could worsen male pattern hair loss, and I would leave that off for now. But this is just one piece of the puzzle. Here are the 4 other key ones:
- If you actually have a high DHEA (which will also cause this — so if on DHEA, stop it) and testosterone level despite not being on DHEA or testosterone, your physician should consider PCOS (polycystic ovarian syndrome) and the treatment for this is to take Metformin and avoid sugar. This is not usually the issue though if you are post menopausal and if both of your ovaries were removed with the hysterectomy. If high in your case, you should also check an ACTH level and morning cortisol (fasting). If high, get adrenal support to turn off adrenal testosterone production.
- If these tests (DHEA and testosterone) are not elevated and you have male pattern hair loss, it is often the ratio of estrogen to testosterone along with conversion to DHT which is at issue, and bio-identical Estrogen (Bi-Est) can help by restoring a healthy estrogen/testosterone ration.
- Low thyroid may be causing much of the hair loss, so optimizing thyroid dose is very important.
- Take the Energy Revitalization System vitamin powder for overall nutritional support (can help hair a lot).
- Be sure low iron is not an issue by checking your blood Ferritin level. Ignore the normal range and be sure it is over 40 (and even up to 100 helps hair). If taking iron, take it on an empty stomach at night so it does not block thyroid hormone absorption.
Hope this is helpful.
Love and Blessings,
Dr. T
I've had myofascial pain for over 3 years and nothing has helped. What should I do?
I used to be very active and now any exercise hurts. I've been to several PTs and tried acupuncture, massage, rolfing and cupping. Nothing has helped.
MPS (Myofascial Pain Syndrome) is a localized form of fibromyalgia. Basically, MPS is when a muscle is shortened and tightened with a tender knot (trigger point) where it bunches up in the center. Most people with FMS have myofascial pain as a component. SHINE helps metabolically, whereas the other treatments you note above help structurally. But effects from these will be transient until the metabolic issues are also treated, which the SHINE Protocol will do. Once these issues have been treated, the physical therapies you noted for MPS can begin to work.
Dr. T
Experiencing Hypothalamic Dysfunction from a head injury. Can treatment help?
Dear Dr. Teitelbaum,
I am contacting you in the hope that you can assist my partner. Ten years ago he was in an incident at work where he was violently pushed to the floor and banged his head. There were no immediate symptoms. However, the next day the various symptoms began. For a while after he was referred to the doctors at work, and subsequently a head specialist in a hospital. The diagnosis from the work doctor was that he had ME, and the diagnosis from the head specialist was inconclusive.
I thought I would Google his symptoms, given that medicine can move significantly forward over a number of years, and your name frequently came up.
His symptoms are:
- Fatigue (brain fog) for up to 15 hours, resulting in difficulties constructing sentences or spelling simple words and "zoning out."
- Complete lost sense of thirst or appetite (all the time).
- Low libido.
He used to skydive and carry out other "adrenaline-type" activities, but stopped as he felt his lowered ability to think was potentially life threatening in these situations. His lowered levels of concentration has also capped his current potential in his job as he cannot concentrate to pass exams or tests. He also snores chronically, but I'm guessing this is probably not linked.
He has a really good heart, has had cognitive tests which show him to be above average in intelligence and works hard to physically keep himself in good shape. He tries to remain positive and states "if this is the worst thing that has happened to me, then it is not that bad." Though he remains positive, he gave up a while ago on trying to resolve his condition. It does appear to be worsening, but I believe this may be linked with an increase in his physical training (weights but particularly swimming).
From reading your comments, I believe he has hypothalamic syndrome but wanted to do some more research before I suggested he investigate this. He has previously stated that he does not want to get his hopes up for a cure that may not come into fruition and hence my e-mail to you first. I am hoping that you can give me a steer as to whether you feel it is an avenue worth pursuing and, if so, what the benefits would be to him (so I can persuade him to try again!), what our next steps should be (please bear in mind we do not have a great deal of money), and what other recommendations you may have.
Apologies for e-mailing you out of the blue, but I am really, really hoping you can help.
Thanking you in anticipation.
Dear Amanda,
Hypothalamic/pituitary dysfunction is both common and overlooked in those with head injuries, and the SHINE protocol discussed in my book From Fatigued to Fantastic! can be very helpful — particularly focusing on the "H" in SHINE, which stands for "hormones," such as thyroid, adrenal and testicular (even if lab test results show the "normal" range).
There is a clinic near you that works with CFS that I would recommend you speak with. I will send you the contact information for them separate from this email. They may be able to help you or advise you on who you should see in your area that might be able to help
In addition, the following are two research articles on the problem with physicians missing the hypothalamic/pituitary dysfunction in TBI/Traumatic Brain Injury:
- Hypopituitarism in childhood and adolescence following traumatic brain injury: the case for prospective endocrine investigation
- Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Hemorrhage
I hope this is helpful. That he has not been able to be helped does not mean that there is no effective treatment — but sometimes simply reflects lack of awareness on how to treat.
Love and Blessings,
Dr. T
My daughters have been diagnosed with Hashimoto's Thyroiditis. What do I do?
Dear Dr. T,
I have three daughters between the ages of 11-25. They were born in the years 1985, 1988 and 1999. Up until these most recent two years, we felt blessed with healthy daughters. But in approximately 2009 our oldest daughter was diagnosed with Hashimoto's autoimmune (thyroiditis) and our middle daughter is showing symptoms but lives outside our home and is currently trying to obtain coverage to confirm her status suspected.
Our youngest daughter and only one residing with us recently has her annual physical and they checked her TSH level and have now advised us she is suspected of having a thyroid problem, which they drew more blood today to check the T4 and something else (I am just now learning about this disease). Being extremely concerned, saddened, and overwhelmed not having ever heard of this autoimmune in our family being diagnosed, I started researching this evening to better understand potential causes of this.
I am writing to you in hopes of a response as I've seen where there are mounting cases being diagnosed in recent years for unknown reasons and belief that many more have been overlooked. I also came upon an FDA website/article among others that mentions the RhoGAM shot started in 1968 continuing through April 16, 2001 to have had mercury containing thimerosalin it. With all three of our children I was pressured to get these dual injections (one while so many weeks along in pregnancy and the other while recuperating from giving birth in the hospital). The medical staff made you feel as if your child's health was in imminent danger if you did not do so and either way had you sign to refuse or sign to accept the injections. There are postings now saying that the mercury product was unnecessary and possibly had numerous effects on our children to where even the FDA has begun questioning it, and as of April 16, 2001 the ingredient was left out and the injections redeveloped.
I am going to include part of what I've read below for your review. I am desperate for answers here and feel heavily burdened by this situation my children and I are in. I am O- and they all are O+ but in some of the forums, blogs or articles, it was mentioned that several women gave birth without these shots (since they were more informed about these dangerous ingredients noted above), with mixed blood types to their significant others without complications to either the mother or infant at all. This is not what was explained to me and I would appreciate more specific information/findings on this as I can't imagine just how many mothers/children have no idea about this and may even be undiagnosed. It is just plain wrong.
Please read the FDA article below, there were more on-line than just this. I am so hopeful of your help as I know you were a guest on The Dr Oz Show and I feel perhaps this too needs to be aired/shared with his viewers. I am so very hopeful of hearing from you and getting your opinion/advice on this matter.
[FDA article ommitted]
Best regards to you,
Dear Monica,
Hashimoto's thyroiditis is very common, and is the most common cause of an underactive thyroid. Although it will often run in families, it is very common in the general public as well. The good news is that it is fairly easy to treat. The bad news is sometimes physicians are poorly trained in diagnosing and treating thyroid disorders.
For an overview article on thyroid, see Thyroid Hormone Deficiency — An Overview (an exerpt from my book From Fatigued to Fantastic!).Taking the RhoGam for an Rh mismatch was a critical thing for you to do and is very unlikely to have been the cause of the Hashimoto's. I agree that it is incredibly stupid for them to have thimerosol mercury in vaccines. Fortunately it is now being removed from most vaccines. The vast majority of people with Hashimoto's did not have RhoGam treatments, and I suspect that it is largely a coincidence in your daughters' cases. You may want to check yourself for an anti-TPO antibody (and have your husband check this blood test as well ) as there is a significant chance that one of the two of you will test positive. If so, you may feel much better with some simple thyroid treatment — and it will rule out the Rh treatment as being an issue for your own peace of mind.
When I diagnose a case of Hashimoto's (i.e., a positive anti-TPO antibody — though this can be positive in other thyroid diseases as well), I consider this very good news for the patient. It is generally not dangerous, it is very easy to treat, and most people feel much better with treatment.
The key is to optimize thyroid hormones as discussed in the article above: trying different forms of thyroid hormones if needed, and adjusting the dose based on the patient's response more than the blood tests. Sometimes people will have symptoms from the inflammation itself, but this usually settles with the thyroid support which rests the thyroid gland. In addition, adding 200 µg of selenium daily (not more) will also help to settle down the Hashimoto's symptoms. With this simple approach, my patients with Hashimoto's do great. The frantic stuff you read online relates to physicians lack of awareness of diagnosis and treatment as well as missing secondary fibromyalgia from low thyroid (diagnosed by widespread pain associated with insomnia and fatigue) which is also very treatable if you simply know to look for it. So again, not to worry. If you daughters have trouble getting the physician to prescribe the thyroid dose properly, they can simply see a holistic physician who knows how to do so (see the Amercian Board of Integrative Holistic Medicine to find over 1,500 practitioners in the U.S.).
To stay up to date on thyroid disorders, I recommend the newsletter by Mary Shomon, my favorite thyroid advocate. To sign up for her newsletter, visit Mary Shomon, Thyroid Coaching Services.
I hope this is helpful.
Love and Blessings,
Dr. T
A reader shares his daughter's experience using Adderall to help her CFS.
Dear Dr. T,
I just wanted to share some information and thoughts with you if you don't mind.
My daughter has chronic fatigue syndrome as well as POTS and migraine. She is being seen by A. Martin Lerner (ID), MD of Beverly Hills, MI, as well as Blair Grubb (Cardiology — POTS), MD, located at the Toledo Medical School. I'm sure that you are familiar with these two gentlemen, at least by reputation if not personally. I think they are both excellent clinicians with broad experience and I am pleased to report to you they have had significant success improving my daughter's general activity level and vitality.
As you probably know, Dr. Lerner has been exploring various potential viral instigators for this syndrome. He has an impeccable ID background and only opened a CFS clinic after many years of practicing ID at the Beaumont Hospital in Detroit. He also suffered CFS as a young man and gained from those insights. In my view he is also one of the most extensively qualified medical virologists in practice. After practicing medicine for 50 years — slightly more — he has the advantage of having seen so many infections, including many that are not prevalent today, and the courage to trust his clinical skills even when the clinical laboratory testing may not be entirely conclusive. He has employed a long course of Valcyte with my daughter which appears to have been efficacious.
One of the more recent therapeutic interventions that has helped my daughter tremendously with her focus and concentration has been Adderall. It is an interesting hypothetical possibility that amphetamine, and possibly methylphenidate as well, might improve focus and concentration for CFS pts in much the same way that they are presumed to do so for ADD/ADHD pts, by activating negative, distraction inhibiting, loops in the frontal lobe. While "brain fog" is a wonderfully descriptive term, I wonder if it is not an impediment in that words like "attention" and "focus" offer more precision and resonate much more with the neuropsychiatric literature and clinical experiences gained in treating these disorders. (You can look at Furster's lovely book "The Frontal Lobe" if you want a nice and pretty current summary of these ideas.) I only mentioned two clinical applications but there seem to be several including Tourette's Syndrome. Now, I can't tell you whether this theoretical speculation that I am sharing with you is correct or just another intriguing idea. What I can tell you, however, is that Adderall has been a huge plus at least in this one case. It may be something to consider.
Thank you for your leadership and dedication to this horrible syndrome. As "post infectious fatigue" is becoming better recognized in medicine I am hopeful that these conditions will be better appreciated and that research and clinical experiences will provide more effective treatments.
Michael E. Ottlinger, PhD
Diplomat American Board of Toxicology
US Environmental Protection Agency
Office of Emergency Management
Dear Michael,
Thank you for your feedback! I am very familiar with Dr Lerner's work, as well as the Valcyte research by Dr. Montoya (see my article Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure).
Dysautonomia, inclusing POTS, is fairly common in CFS, and the Amphetamine medications (we use dexedrine when these are needed) do help stabilize function and may even normalize tilt table testing, and we discuss this in our writings as well. Because of the addictive issues, we use other treatments first for the POTS and overall CFS, so usually the dexedrine/Adderall are not needed. But when needed, they can offer a major benefit. I would note that the younger the patient, paradoxically, the higher the dose of dexedrine needed (kids often need 15-30 mg and adults 5-12.5 mg/day). I do not go over 30 mg a day, as that is when we start seeing addictive behavior and other problems occur.
All of these can also certainly help cognitive function
Below are other treatment considerations in POTS:
- Increase salt and water intake.
- The Adrenal Stress End product or licorice tea 1-2 cups each morning.
- Avoid sugar and alcohol (small amounts may be OK).
- Compression stockings.
- Walking exercise to stay conditioned.
- Supplement with the Energy Revitalization System vitamin powder 1/2 -1 scoop each am, ribose (Corvalen 5 gm scoop 3x day for 3 weeks then 2x day), coenzyme Q10 chewable 200-400 mg a day, acetyl L-carnitine 1,000 mg 2x day.
I would begin all of the above initially (can be taken together and with or without food, and at the same time as the medications. Give 6 weeks to see effect).
Prescriptions (can try each separately for a 6-12 week trial, but I would do 2 at a time starting them 1-2 weeks apart):
- Florinef 0.1 mg a day (if headaches, lower dose to 1/4 tab a day and slowly increase to 1 tab/day). Takes 6 weeks to see effect.
- Inderal 5-20 mg 2-3x day (effects seen quickly — often first dose).
- Midodrine (ProAmatine) 5-10 mg 3x day (first thing in am, after lunch and around 5 pm, leaving at least 4 hours between dosing). Effects are seen quickly, often within 1-2 weeks.
- Prozac 10-40 mg a day (if sexual dysfunction side effects occur, lower dose or switch to Cymbalta). Takes 6 weeks to see full effect.
Hope this is helpful.
Dr. T
What are your thoughts about these 13 potential CFS treatments?
Dear Dr. T,
You know I'm an avid reader of your books and website, but there are purported new treatments I read about elsewhere that I haven't seen you address. Perhaps you could address some of them in an upcoming newsletter?
- NUMUNE. It is derived from Caprine (goat) serum:
- Rx l-carnitine. I see NORD has a Patient Assistance Program to help people with CFS obtain the med
- BioBran MGN-3
- Galantamine
- Methylphenidate
- Artesunate
- Etanercept (Enbrel)
- Interferon-beta (Avonex, Betaseron, Actimmune)
- Oxymatrine
- Vistide (Cidofovir)
- Isentress (raltegravir)
- Viread (tenofovir)
- GcMAF (vitamin D-binding protein)
Thank you.
Hi John,
Have not heard of anyone's CFS/FMS improving from # 1 or # 9-13 (which does not mean it won't help — just not enough to explore it yet).
In my book, From Fatigued to Fantastic!, I talk about the role of carnitine (needs to be the acetyl L-carnitine form to get into mitochondria).
The MGN 3 is a good immune stimulant, but I find others give more "bang for the buck," so I use those instead.
Galantamine, which works via acetylcholine, had minimal effectiveness relative to cost and toxicity in research and our trials over a decade ago. So we don't use it.
Methylphenidate (Ritalin) can clearly be helpful in CFS (we find its cousin Dexedrine works better) as it raises dopamine and stabilizes the autonomic dysfunction, but carries addictive risks.
The artesunate (Artemesia or Chinese Wormword) is discussed in my earlier books as a helpful antiparasitic.
The interferon can actually flare CFS symptoms.
How's that for a quick overview;-)?
Dr. T
The Energy Revitalization System powder has been a huge help to me, but is there a version that might be easier on the stomach?
Dear Dr. T,
Hello, I've recently been using your berry splash Energy Revitalization System and have found it has made a huge difference. However, I find the drink hard to stomach so was wondering if you could suggest a tablet (tablets) equivalent?
Many thanks.
Dear Claire,
Because of the high level of nutrients the vitamin powder can cause gas or loose stools in some folks. I would lower the dose to 1/2 scoop a day. If still a problem, a good substitute would be the multivitamin tablet Natrol My Favorite Multiple plus Jigsaw Magnesium w/ SRT 2 tabs once or twice a day and at least 1 egg a day for the amino acids. These offer only a small part of what's in the powder (you would need to take over 35 vitamin and mineral tablets to replace a scoop), but still is excellent nutritional support ;-)
Love and Blessings,
Dr. T
Would the vitamin K in the Bone Health calcium product be a concern for someone who has thickening of the carotid artery? It is a mild case.
Thank you.
Dear Denise,
Vitamin K helps decrease the risk of heart and blood vessel disease, as would magnesium, so the Bone Health supplement is OK to use in this setting.
Dr. T
Why does my iron (ferritin) level stay low despite supplementation?
Dear Dr. T,
I have been taking 325 mg a day of ferrous sulfate and can't get my ferritin past 20. What would the equivalent of the iron by Ultraceuticals be? Is it okay to take with a cup of coffee at 3:00 p.m.?
Thank you.
Dear Frank,
It takes about 2 tabs of the Ultraceutical to supply the 60 mg of iron present in what you are taking, so your dose is high enough. If ferritin is still only 20 after 3 months use, you likely are either having large losses (most often from bowel bleeding hidden in stool — be sure your physician has checked at least 3 stool samples for blood on days you did not take high dose vitamin C supplements). A simple urine screen for blood is also warranted.
It's more likely that you are not absorbing the iron well. If the above tests are negative, I then add vitamin C 500 mg 1 tab taken whenever you take the iron. Take the iron on an empty stomach (including no coffee or other food for 1-2 hours before or after eating — bedtime works well). Only take the iron 5 days a week (take the weekends off).
These simple measures will often identify and treat the issue.
Love and Blessings,
Dr. T
What does a positive anti-gliaden antibody blood test mean? Do I have wheat allergies?
Dear Dr. T,
I just got a lab report from my doctor. We have been trying to figure out all of my headaches and high inflammation markers. She did a Gliadin Antibody Panel and mine came back high. Greater than 17 is considered high and mine is 32. I looked it up on Google and it seems to refer to a sensitivity to wheat but not necessarily celiac. I have tested negative for celiac from blood tests and biopsy a few different times.
I know I need to talk to my doctor, but can you point me somewhere so I can do some good reading on this before I do?
Thank you advance. I appreciate YOU!
Dear Marianne,
Though a positive anti transglutaminase antibody would be a significant finding suggesting celiac disease (a genetic wheat allergy — see How Often are Spastic Colon (and CFS) Really Celiac Disease (Wheat Allergy)?), I suspect that an anti-gliadin antibody (especially if IgG as most are) often does not mean much. What I would do given the test is an elimination diet (see Multiple Food Elimination Diet) to see if it helps your overall symptoms, including CFS, and if so, then add gluten (wheat) to the diet to see if symptoms recur. If yes, then I would do a gluten-free diet. Fortunately, for this simpler type of wheat allergy (more easily reversed than celiac disease) you may be able to add gluten back in after 3-6 months after treating bowel infections (especially Candida) and using adrenal support (see page 229-233 in my book From Fatigued to Fantastic!). In addition, NAET can eliminate many sensitivities (see www.NAET.com ). If no benefit off gluten in the elimination diet, then I would disregard the anti-gliaden antibody being positive (or do the NAET procedure to be on the safe side)
P.S. — For more on migraines, see A Comprehensive Medicine Approach to Migraines. For tension headaches, see Tension Headaches or my chapter on headaches in my book Pain Free 1-2-3.
Love and Blessings,
Dr. T
I've been on the sleep medication Xyrem for five years. But its effectiveness has dropped over the years, and I've steadily increased my dose in order to compensate. Is this safe?
Dear Dr. T,
I have been on Xyrem for over five years. I did the first three years at 4.5g 2x per night. Each dose gave me four hours of deep, refreshing sleep. The next two years I increased to 3x per night and each dose gave me three hours of sleep. For the past three months, I get just under two hours of sleep per dose. My MD suggested I increase now to 4x per night, which should give four two-hour sleep sessions each night for a total eight hours of sleep.
Are there any concerns with taking Xyrem at this high a dose? Have you or any colleagues ever used a dose of 18g per night? Is there any research of the medication at this dose? I've been told that Xyrem can be physically addicting at this dose and can also load me with sodium. But my MD said as long as my blood pressure stays around 110/70 there should be no worry. I also drink two 32-oz water bottles per day with Corvalen to "flush the sodium out."
Thank you.
I personally would be hesitant to continue raising the dose in the presence of "tachyphylaxis" or needing to escalate the dose because of decreasing effects. Ask your doctor to consider cutting back to two times a night and to add in other sleep meds slowly. Though adding other sleep meds to Xyrem is controversial, it is sometimes needed in fibromyalgia. I avoid valium family meds and instead prefer neurontin, trazodone, tricyclics and even low-dose ambien.
Love and Blessings,
Dr. T
I've discovered that Aloe vera not only helps my restless leg syndrome, but also my fibromyalgia. Have you heard of this?
Dear Dr. T,
I just read your report on the effect of using statins and coenzyme Q10 in the treatment or of symptomatic relief of symptoms in fibromyalgia. As a sufferer of fibromyalgia for the past five years following the birth of my daughter, I have no doubt that hormones play a big part in the development of the syndrome. I have been taking 300mg of CoQ10 for the past three years and d-ribose powder as it really helped the restless legs I had every night without fail. I did however refuse all other prescribed medication and chose instead to exercise — albeit very little — each day and I did manage to control it.
However, for the past six weeks I have been taking aloe vera juice 120 mls daily and the results are astounding. I have no more restless legs, no migraines and no irritable bowel. I am still a bit tired, but nothing to the exhaustion I was having, I am sleeping deeply all night and my sugar cravings are gone. Aloe vera has been known for centuries as a healing plant. Its ingredients are amazing in how they work together, and there is a lot of anecdotal evidence that it seems to help many autoimmune and inflammatory disorders. With a background in nursing I initially had my sceptical medical head on me, but I can assure you I am feeling so much better.
I am at a loss as to why more clinical trials are not being done on aloe vera. I am totally aware that all cases of fibfomyalgia and CFS are different and sometimes different things work for different people, but I would be interested to know your thoughts.
Yours sincerely,
Dear Claire,
I am very glad the Aloe helped.
Aloe has fairly remarkable healing properties, especially for skin healing, but also may improve immune function (helpful in CFS). In fact, along with noni, aloe is one of the most respected native medicinal plants in Hawaii (where I live). A couple of thoughts:
- If you have restless legs (and restless leg syndrome is very common in CFS/FMS), in addition to magnesium, optimizing iron levels can be very helpful. To do this, check a blood test for "Ferritin." Ignore the normal range, and supplement your iron intake if the Ferritin is under 60 and until it is over 60 (for more info, see Iron More Effective than Requip for Restless Leg Syndrome).
- Aloe can be found at very low cost at WalMart and often even at Safeway at a cost of about $8 for a gallon. The brand is called "Fruit of the Earth." Get the sugar-free version which is 99.8% pure aloe. 4-8 oz a day is a helpful dose (I add stevia to sweeten). You can begin with 8-12 oz a day for the first few weeks.
Thanks for sharing your experience!
Love and Blessings,
Dr. T
A surgeon has recommended I have a thyroidectomy. Have you seen a thyroid decrease in size through natural means?
Dear Dr. T,
I have been diagnosed with Autoimmune Thyroiditis— functioning normal, but enlarged. A surgeon would like to perform a thyroidectomy. Have you seen a thyroid decrease in size through natural means?
Thank you for your attention,
Dear Melissa,
I would recommend getting a second opinion from an endocrinologist who is not associated with the surgeon. The questions are:
- Why is he recommending surgery if it is normal functioning (and even if not) and not a cancer?
- What are the risks of simply watching with medical treatment as needed versus the risk of surgery?
- Is simply waiting and treating medically a reasonable choice? If not, why?
From what you are saying, I am not clear why surgery is being recommended in your case (this is not to say it is not reasonable, but I would need a good bit more convincing).
Also, be sure to ask your physician what type of autoimmune thyroiditis you have, as there are many different types.
To learn more on natural treatments for thyroid problems, read the books "Iodine" and "Overcoming Thyroid Disorders" by Dr. David Brownstein. After you've read one or both of these, the book "The Autoimmune Epidemic" may give more background as well.
I hope this is helpful.
Dr. T
I noticed that your citrus energy drink has a lot of magnesium. Will this effect the absorption of the breast cancer or hypothyroid drugs I'm on?
Dear Dr. T,
I just purchased your energy drink (citrus). I am on my third year of taking an aromatase inhibitor for breast cancer, and I also take Levothyroxine for hypothyroid. I noticed that the citrus energy drink has a lot of magnesium. Will this effect the absorption of either of these drugs.
I have been told that the aromatase inhibitor I take (Aromasin) doesn't negatively effect the adrenal gland even though its purpose is to block aromatase from the adrenal gland. I seem to have symptoms that would dispute this — cold chills, fatigue, anxiety, etc. Can you shine a light on any of this?
Thank you.
Dear Kelly,
I am very comfortable using the vitamin powder in my patients with breast cancer and on thyroid hormone. To keep the oncologist happy, I am OK stopping it for a week before and after radiation therapy, as they sometimes get fussy about antioxidants during radiation (the radiation therapy is oxidative so they don't want antioxidants then).
The aromatase inhibitors are largely to prevent conversion of DHEA and testosterone into estrogen. Though these are adrenal hormones, the aromatase does not block adrenal function, but rather conversion of these hormones to estrogen. If the aromatase flares your symptoms, it likely is from low estrogen and, depending on your individual case, your oncologist can decide if the importance of the medication outweighs the symptoms.
I do not give DHEA in women with a history of breast cancer, but am comfortable giving adrenal support.
I hope this is helpful.
Love and Blessings,
Dr. T
Help! My hair is falling out!
Hello, Dr. Teitelbaum. A friend of mine attended your seminar and found it to be most informative. I wish I could have attended. I understand you believe in natural remedies when available.
My hair has been falling out for several years. I have tried vitamins and fish oil. The fish oil seemed to help for a little while but now my hair is falling out even faster.
I have an aversion to doctors, so put off going to one for as long as possible. But since I couldn't find anything to help, I finally went last week. My thyroid checks out OK. Do you have any ideas what natural remedy I could try to slow down or even stop the unnatural loss of my hair? I am desperate! Please help.
P.S. — I do have a lot of stress in my life right now. But my hair was falling out even before the stress level went up.
Dear Jenni,
There are many considerations that can help:
- The stress may aggravate it until 9 months after the stress resolves (telogen effluvium). But the hair grows back in after this.
- That the thyroid tests are normal does not mean your thyroid levels are OK. If tired, weight gain, achy, or cold intolerant, consider thyroid support anyway.
- The Energy Revitalization System vitamin powder has many key nutrients and is very helpful.
- It is critical to optimize iron levels. The test for this is called a ferritin level. Though normal is over 12, it needs to be over 100 to optimize hair regrowth (again, the doctor should check a ferritin level and not an iron level. That they say it is normal means nothing. Look at the result yourself and bring the ferritin level up over 100.
- Extra biotin (though there is a good bit in the vitamin powder) can help. Can add 500-5,000 mcg/day.
Hope this is helpful.
Love and Blessings,
Dr. T
Can melatonin and other herbs be used safely for better sleep by patients who are taking arthritis medications?
Thank you,
Dear Terri,
Melatonin is a very reasonable and relatively safe supplement to take to assist with sleep in arthritis patients. It can safely be used with DMARDs and NSAIDs. And melatonin levels are often low in rheumatoid arthritis, so supplementation may simply normalize blood levels.
A key issue is the dose. Unfortunately most store brands are at a 3 mg dose. Although this has not been shown to cause significant toxicity (relative to other sleep aids), all it takes to raise a low melatonin level up to normal and get the full effect seen in dose-response studies is 3/10 to 1/2 milligram of melatonin.
Some considerations:
- Sleep is critical for growth hormone production and tissue repair as well as for resolution of pain. Poor sleep has been shown in studies to increase pain (e.g., muscle pain in fibromyalgia). Even in arthritis, we see clinically that much of the pain attributed to the arthritis is secondary myofascial pain from muscles. Basically, poor sleep equals increased pain, so addressing sleep is important.
- As is the case in the hundreds of other medications sometimes used in these patients, there is no research on how these medications interact with the arthritis medications, and they are combined based on clinical experience. As melatonin is a compound normally found in the body, interactions are less likely. Again, however, more is not better.
- In addressing the relative risk of any treatment, this must be done in the context of risk of nontreatment. Sleep is often disrupted in this population, and poor sleep increases pain. Persistent pain results in increased doses of arthritis medications. As NSAIDs are associated with as many as 16,500 U.S. deaths a year from bleeding ulcers (and in the recent BMJ meta-analysis a dramatic increase in risk of heart attack and stroke), and melatonin has been associated with no deaths or persistent serious toxicity, the equation balances in favor of melatonin.
- There are also many other herbal/nutritional treatments that improve sleep and can decrease pain. These are also often used in combination with melatonin and arthritis medications and can be very helpful.
I look forward to discussing this fascinating area with you.
Love and Blessings,
Dr. T
Do you have advice on how to treat vertigo?
Dear Dr. T,
My brother has struggled with vertigo for three years. He's been to the Mayo clinic and still no cure. Is this not curable or is there a vitamin or something else that would help?
Dear Terri,
Vertigo can be very difficult to treat — either by prescription or naturally.
Short-term vertigo lasting six weeks is most often viral labyrinthitis. It should be treated within the first 3-4 days of onset with the medication prednisone (20 mg twice a day for 5 days to nip it in the bud). However, if it has been present for over a week, then prednisone is less likely to help and one needs to wait it out.
If vertigo has persisted beyond two months, an Ear-Nose-Throat (ENT) physician should do a proper evaluation for chronic vertigo. The most common causes include things such as:
- A benign CPA tumor behind the ear (they will do an X Ray or a CAT scan or MRI of the head to rule this out).
- Ménière's disease. This is associated with increased fluid in the cochlea structures in the middle ear. ENT physicians are very familiar with the standard treatments for these.
- Benign Paroxysmal Positional Vertigo (BPPV).
Benign Paroxysmal Positional Vertigo is most often treated with valium-like medications, which have the issue of addiction. ENT doctors are familiar with the standard treatments for these. If one has benign positional vertigo however, be sure that you ask your ENT or family physician about a special hat which often settles the vertigo. I first saw the research on this around 20 years ago, and although the results are unexpected, they were quite marked. They have now turned this into a special hat. Because it is cheap, most physicians have simply not been taught about it. For more information on this, see the "DizzyFix" description on Wikipedia. If the problem is BPPV or vertigo with no known cause (which usually turns out to be BPPV) I would recommend giving the hat a try.
The hat is not worn during the day but is worn once each day for a week to help you do what is called the "Epley maneuver." This retrains the balance center in the ears. That is often enough to knock out the vertigo long term, although you can repeat it if the vertigo recurs.
This hat will only work if one has BPPV and will not work for Ménière's disease, so you need to ask your ENT ear doctor to see what the specific diagnosis is. Your ear doctor would then also have to write a prescription for the Dizzy hat (sells for about $150).
In addition, get a good multivitamin that contains magnesium, B12 (500+ mcg) and B complex (50 mg+) — for example the Energy Revitalization System vitamin powder. In addition, the herb ginger can take the edge off the vertigo. This can be taken in capsule form, as ginger slices (like in sushi restaurants), or even as cubes of candied ginger (in Chinese food stores) which can be eaten a few times a day and helps symptoms. The medication Antivert is also worth a try.
Love and Blessings,
Dr. T
I have real trouble understanding this stuff (interferon, statins and viral infections).
Dear Dr. T,
I have yeast from my toes to my head and everywhere in between — is this what you are talking about? I'm also prone to bronchitis, although not so much as when I smoked.
Thank you.
Dear Sharron,
It does get complicated. Basically, chronic viral infections cause Coenzyme Q10 deficiency (a readily available nutrient) and suppress a hormone called Pregnenolone (also easy to supplement). Cholesterol medications called statins may help kill the virus. Easier;-)?
"Yeast from toes to head" (dandruff, itchy ears, vaginal yeast and fungal nail changes) suggest a higher risk of candida if any of these are present — especially if sinusitis or spastic colon are also present. The bronchitis may also be triggered by post nasal drip from candida — so it's worth asking your holistic doctor for a trial of Diflucan 200 mg a day for 6-12 weeks along with Probiotic pearls and the Anti-Yeast herbal mix.
Love and Blessings,
Dr. T
Do you recommend patients with chronic fatigue syndrome receive the pneumococcal vaccine?
Dear Dr. T,
I've had CFS for three years. Recently read "From Fatigued to Fantastic" and have started on the nutrional protocol.
My question is: Do you recommend CFS patients receiving the pneumococcal vaccine? My family doctor has recommended it but I haven't checked with my rheumatologist yet. Last year my family doctor wanted me to have the H1N1 vaccine and my rheumatologist said no. I had done my own research and discovered that it would no be appropriate for me to have it so I agreed with my rheumatologist. I'm having trouble finding much information on the Pneumococcal Vaccine for CFS patients and thought you might be able to provide some information.
Any advice would be appreciated.
Thank you.
Dear Maria,
I think the avian flu vaccine was unnecessary for most people with fibromyalgia (as was not impressed with that vaccine in general), but consider the pneumonia vaccine a good idea for those over 65 years of age (and is more likely to help the fibro than flare it).
Dr. T
If interferon blocks viral replication, why do so many CFS people feel like they constantly still have a virus?
Dear Jo,
Because the virus gets ahead of their immune system, so the body cannot get rid of the virus. Normally, viruses last a few days to weeks, so the interferon burst is short term and then stops. In CFS the viruses become chronic because of the immune dysfunction, so the immune system and interferon release become chronically activated (which is what causes the feeling like they have a chronic viral infection — though they do also have the infection)
The goal is several fold with this:
- Supply key items the body has been starved for because the cholesterol pathway has been blocked.
- Augment the effect of the interferon to see if the virus can be cleared/suppressed without starving the body for CoQ10 or Pregnenolone.
Good question;-)
Dr. T
My son is having severe pain in different areas of his pelvis and experiencing burning when he urinates. Multiple trips to different urologists have failed to cure his condition. Can you help us?
Dear Dr. T,
My son is having severe pain and burning in his penis, bladder, pelvis and testicles. He has gone to several urologists, because they keep doing the same things over and over again.
They give him antibiotics becuse they say it's an infection. However the pain and the burning remain. They don't ever try to find the cause and then treat it. Sometimes he doesn't take the antibiotics and it clears up on it's own.
The doctors tell him he has to be on antibiotics for years and we both feel this is a waste of time.
I have done some research. However there are so many things out there and I don't know what I should do. I would like some resources that would help him. The amount of money I have isn't a lot and a lot of doctors charge way too much money.
Do you know of any doctors who truly care about getting to the bottom of what's going on with a patient? I would also like to know which brands of supplements you recommend? Most of the products out there say a lot, but only a few come through.
Can you recommend any books I could buy?
Thanks a lot!
Dear David,
Because of the diffuse nature of the pain, a physical exam is critical to defining its source. Basically, you want to see what area triggers the pain:
- Does touching/squeezing the testicles reproduce the pain? If yes, is it localized to one testicle or both? Is the pain reproduced by touching the scrotal sac alone? Is the pain decreased by lifting the testes so they are not hanging down and are supported? If the answer to any of these is yes, then it suggests that area is the source of the pain and can be addressed based on which is positive. If not, then scrotal and testicular pain is less likely.
- Is the pain reproduced by a rectal exam with a finger in the rectum? If yes, the critical question is which area reproduces it? If it is worsened by massaging the prostate (the area toward the front of the body which feels like a firm plum), then the prostate is the likely source (especially if there is a boggy, softer area which is tender, suggesting infection). If it is caused by deep massage of other tissues besides the prostate during the rectal exam, then it is likely coming from pain in the muscles making up the pelvic floor.(which is my suspicion here along with prostadynia if the prostate is tender). This is called "Pelvic Floor Muscle Pain."
- If there is a penis discharge, one would look for sexually transmitted infections (which they have almost certainly ruled out), or prostatitis (which is what they are likely thinking they are treating).
- If no tenderness in any of the above which reproduces the pain pattern, I would suggest you do a pelvic CAT Scan including the lower spine.
So what is one to do with the above information?
- If the testes exam reproduces pain, the urologists would have looked for torsion (twisting) already and looked at surgery. If epididymitis (inflammation of the long, tightly coiled tube behind each testicle that carries sperm from the testicle to the spermatic duct) the antibiotics usually eliminate it, but one will rarely see a chronic inflammation and pain from reflux of sterile urine. Nerve blocks may then be warranted — but I would begin with general anti-inflammatories (the End Pain herbal 2 tablets 3x day for 6 weeks ), fish oil, and even Motrin family meds along with cool packs and wearing underwear which support the testes (e.g., Jockey briefs) without being too tight.
- Most likely the following is the source of his pain. If the pain is reproduced on the rectal exam and is chronic despite antibiotics, then:
A. If reproduced on palpation of the prostate, it is prostadynia. Adding the bioflavonoid vitamin called Quercitin 500 mg 1-2x a day can help (give it 6 weeks). Most important is 3-12 months of treatment with the prescription antifungal called Diflucan 200 mg a day (use the cheap generic form). This medication tends to be used more by holistic doctors (who recognize fungal infections in the body), so some physicians will try to scare you away from using it saying it can cause liver inflammation. In truth though, it is less likely to do this than Tylenol, and is much safer than Motrin family medications. In those over 18 years of age, long-term doxycycline or Cipro can help along with the medication Flomax (alpha blockers) and are worth a trial. I would add the pain herbals Curamin to the treatment regimen (in health food stores or at our website). It can take 3-6 months to see symptomatic relief from medications, but it is usually quicker. The benefit of the herbals is usually seen by 6-12 weeks.
B. Pelvic floor pain. This comes from the muscles in the pelvic floor being in spasm and constantly putting pressure on the prostate and nerves going to the pelvis. The pain then causes people to tighten the muscles in response, causing an ongoing cycle of pain. This often accompanies prostadynia. Soaking in a warm tub of water can help as can relaxing the muscles. While sitting on the commode, have your son see how far he can let the pelvis muscles and anal sphincter muscles relax before any urine or stool come out. He may be surprised that he can safely let them relax a lot. By consciously remembering to relax these muscles repeatedly during the day (especially in response to pain) he will, over time, break the pain cycle. He should also use the "SHINE Protocol" described on my web site (though it focuses on fibromyalgia muscle pain, it applies to pelvic muscle pain as well) and in my book "Pain Free 1-2-3." Sadly, most physicians are clueless about pelvic floor pain. There is a small subset of physical therapists though who specialize in treating pelvic floor muscle pain (ask a local physical therapist if they know one who specializes in pelvic pain). This can be very helpful.
- If there is a penis discharge and the culture is positive, they know what to treat. If it is negative, it is usually prostadynia as above (unless the testes are tender).
- If the CAT scan shows a problem, these treatments are usually clear cut. A positive CAT scan is rare. Usually it is one of the problems above.
I Invite you to also visit The International Pelvic Pain Society. Also, ask the doctor for a trial of the medications Neurontin (300-900 mg ) and/or Elavil (10-25 mg) at bedtime to see if they help (start with a lower dose if next day sedation and give them 6 weeks to work).
I hope this is helpful. Let me know how he does.
Love and Blessings,
Dr. T
I have a close friend whose brother in LA suffers from severe pain in the anal/rectal area that makes it hard for him to live. Is there any pain doctor in the LA area you can recommend?
I do not have a specific recommendation (it would be difficult without more info), but an excellent starting place is the American Academy of Pain Management.
Key places to begin:
- Is it tender around the anal area. If yes, to deep or soft touch ? Areas of abscess, fissures, etc? The doctor will usually be able to tell when these are an issue (though I no longer presume).
- Is the pain reproducible on rectal exam? If yes, to soft or only deep touch? Is it worst on palpation of the prostate (prostatitis is usually obvious if acute bacterial. More commonly this is prostadynia — usually missed and even more often poorly treated)? Is there evidence of proctitis (usually obvious on proctoscopy or gentle touch on the rectal mucosa)?
- If none of the above, is the pain electric/lancinating (suggestive of nerve pain) or reproduced by pushing on a specific pelvic floor muscle pelvic floor myofascial pain. This latter pain is common and usually missed by physicians.
- Evidence of burning on urination or urethritis.
For this issue, have him do an Internet search on the phrase "california and los angeles and physical therapist and specializing in and pelvic floor pain." This will turn up a number of physical therapists specializing in pelvic floor muscle pain (and some in prostate pain, often what is called prostadynia). These two issues are the most common rectal pain issues missed by most physicians — but often helped by the physical therapy pelvic pain specialists.
Sorry I did not have a simple name to give, but the above should help him get a good start.
Love and Blessings,
Dr. T
Can childhood abuse be associated with wheat allergies or autoimmune disease?
Dear Dr. T,
Thank you, for putting forth the hypothesis that childhood abuse can cause weight gain (on Doctoroz.com). I have wondered if it could be a contributing cause of Celiacs Disease in some. Perhaps the cause of the connected mild depression.
In a paper this week, I read that it is connected with depression in adults — the later in life the more likely, I believe they said that depression is related with increased incidence of other things, so it indicates the sense of loss, perhaps, of other things. Perhaps a loss of the natural sense of wonder and curiosity; positive expectations, etc.
I run into people weekly that are working with Celiac symptoms. Experts say that a "switch" is turned on in the immune system that mis-recognizes gluten and produces anti-bodies to destroy tissue surrounding it. Not knowing the "off switch," the next best thing is to remove gluten from the diet — and people recover, the immune system quiets down. Wouldn't it be great if the treatment you describe would be applicable in "turning off the switch" (I suspect a trauma — childhood abuse is a type of invasion of space, an attack on integrity, that would marshal defensive inner emotions.)
Thank you for raising this issue. Your post was a blessing and encouragement.
Dear L,
A history of abuse can be associated with the cortisol issues, weight gain, depression and CFS/fibromyalgia, but I have not seen a direct link between this and celiac disease.
On the other hand, the cortisol changes can predispose to autoimmune dysfunction, including possibly the celiac. I would want to double check a few things though. Be sure the diagnosis of celiac was made with either a small bowel biopsy or a positive transglutaminase antibody test. If yes, then best to avoid the gluten long term. If it was made by other testing (e.g., blood tests for anti gliaden antibodies or IgG or IgE, or rast or other allergy tests for wheat/gluten) I do not consider these to be indicative of Celiac Disease, but rather simply a wheat/gluten sensitivity that often resolves after a few months by treating the adrenal/cortisol issues and Candida overgrowth.
In addition, a special acupressure technique called NAET can be amazingly effective at eliminating food or other sensitivities (our study which is pending publication showed 23/30 autistic children were back in regular school after a year of NAET vs 0/30 in the untreated control group — showing the sensitivities can play a role in many illnesses). I also highly recommend a wonderful book called "The Autoimmune Epidemic" for those with autoimmune illnesses.
I am not really sure from the tone of your letter that you are truly depressed as opposed to simply feeling down because you are ill. I will offer a simple way to tell: Do you have any interests? If yes, but frustrated that you do not have the energy to do them, then you may not be depressed — you're simply ill. If you answer no, I don't have many interests, then you are more likely to actually have depression.
Either way, two articles that can help are Eliminate Depression — Naturally! and How Often are Spastic Colon (and CFS) Really Celiac Disease (Wheat Allergy)?
Hope this is helpful.
Love and Blessings,
Dr. T
I have CFS and fibromyalgia and am planning a safari vacation to Kenya. Should I have any concerns over immunizations, especially for Yellow Fever, as it is a live virus?
Dear Dr. T,
I have CFS and fibromyalgia. I am taking your supplements and feeling better. I just have one question — My family was planning a safari vacation to Kenya and I am concerned about immunizations, especcially Yello Fever since it's a live virus. Should I go or not.
Thank you very much for your help. I understand that Dr. T is busy and would love to pay for this consultation.
Dear Inna,
I do not consider the risk of the vaccine(s) enough to recommend against doing the trip. More of a concern is parasites people catch on trips where these are common.
In your individual case, legally I need to defer to your physician. So I do.
However, I can offer my general advice on the matter;-)
Bottom line here? Sit by yourself a minute and feel into "Do you really want to go vs. do you feel you should go?" Put differently, would you have secretly (to yourself) felt relieved if I said you could not go? Thrilled if I said "no problem?"
If you really feel good about going, if it was me I would go. I would do any required vaccines, and be careful to drink only known bottled water, and do the other standard traveler's recommendations to avoid parasites. If there are symptoms of gas/diarrhea on return, then I would do a stool parasite test at Genova labs and treat if parasites are present — basically, the same advice I'd give anyone. I would add for you, don't feel the need to keep up with everyone on every outing. For those outings you are less interested in, wish those with you a fun day and find a sweet place to hang out and read a book.
If on the other hand you do not feel good about going, your body is saying no, and I would not go.
Hope this is helpful.
Love and Blessings,
Dr. T
P.S. — I have heard wonderful things about Kenya. If you go, send us some pictures;-)
My 13 year old son has chronic pain. At what age can a child take the pain formula?
Thank you,
Dear Angie,
Reye's Syndrome has become quite rare, but nonetheless aspirin products are best avoided during colds and flu-like infections in children. By 13, the risk of Reye's is dropping further (Reye's can hit at any age, and there is not a "cut off age" where it stops). I have seen no reported cases of willow bark causing Reye's (it is a theoretical risk based on the salicilate component).
So what does this all mean?
Though everything has some risk, the risk of willow bark in a 13 year old without a history of aspirin sensitivity is quite low, and I would be comfortable giving it to my son if he were 13 years old. I would stop it during flu and cold symptoms just to be super safe.
An alternative (and reasonable to try both for pain, though at 13 I would do 1 at a time for a 4 week trial and then switch to the other and see which works best) is another herbal mix called Curamin (available at my website www.endfatigue.com and at most health food stores) which has no willow bark.
The above is for general pain. Depending on the specific type of pain he is having, even more effective pain relief is available if tailored to the specific pain type. See these exerpts from my book Pain Free 1-2-3 to learn more abut different pain types.
I hope this is helpful.
Love and Blessings,
Dr. T
What are your treatment recommendations for people with persistently low blood pressure?
Dear Dr. T,
Some people with fatigue are consistently running in the 80's-90's systolic. They may not be syncopal or orthostatic, but just tired. Sometimes it comes up a little with an IV, but doesn't stay. I can't help but think this contributes to brain fog and fatigue. These are often young people without evidence of heart issues.
Thanks for your help.
[From Andre, a colleague of Dr. T]
Dear JP,
This is a common phenomenon in adrenal fatigue and it is usually due to a low aldosterone and associated decreased vascular volume. These individuals will benefit from adding Fludrocortisone to the Cortisol dose which usually increases water reabsorbtion from the tubules adding to the volume. I usually start with 0.05 mg dose but in individuals with such low diastolic numbers I would start with 0.1 dose.
[Adds Dr. T...]
Dear JP,
As Andre notes, adrenal support is key. Would clearly add the florinef, and the younger the patient is (under 23 years old), the more likely the florinef is to help.
In addition to low adrenal function, the dysautonomia also contributes to low BP as well as NMH and POTS (drops in BP with standing or exercise, which often coexists with the low BP). So also consider, in addition to cortef and florinef:
- Salt and water load.
- A trial of Dexedrine (up to 20 mg a day to stabilize autonomic function).
- SSRI's (e.g., Prozac) can also stabilize BP.
- Midodrine (proamatine 5-10 mg up to 3x day before exercise (but not after about 5 pm to avoid high BP during sleep when lying down). In severe cases this may help. The FDA was threatening to pull it off the market because they wanted more data on it, but recent reports suggest they relented and it will stay available. (See the article on this in Medical News Today for more on the FDA action.)
Love and Blessings,
Dr. T
What are your recommendations on getting or avoiding the Hepatitis B vaccine?
Dear Dr. T,
I have a patient doing well on our protocol who works for a chain pharmacy and will be giving out flu vaccines in the fall and part of the company policy is that employees have the necessary vaccines which includes hep B. She states that she has reservations getting the vaccine and can opt out by getting a doctors note explaining her condition and how the vaccine can potentially exacerbate her sx's. Has anyone come across this situation and how could it best be handled?
Thanks in advance.
Dear Edgar,
I think Hepatitis B is an important vaccine. Hepatitis B is epidemic in Asia, and it is only a matter of time before it becomes so in the US without the immunization.
On the other hand, some people with CFS are wary of vaccines aggravating their illness. Overall, more people with CFS have benefitted than have had their CFS flared from vaccines. A Scandinavian vaccine even showed frequent vaccinations (if memory serves it was for Staph) dramatically improved fibromyalgia, but there was no money in it so treatment was abandoned.
For this patient and Hep B vaccine in general, here is the bottom line I give. Check Hep B antibody titres. If +, they are immune and can be excused from the vaccine. If not +, take the series of 3 and don't worry about it (the worry is more likely to trigger the flare than the vaccine itself). The key point is that if they do not seroconvert after the series of 3 vaccine injections, they should stop the vaccine, and write them a letter of support if this occurs. The patients I have seen flare are only those who did not seroconvert, and continued to receive ongoing injections beyond the normal series of 3.
Love and Blessings,
Dr. T
I have fibromyalgia and an elevated ANA (anti-nuclear antibody) blood test level of 1:160. What does this mean?
ANA is a screening blood test for lupus. By itself, I treat an ANA of 1:160, or even up to 1:320 as being unimportant in CFS/FMS.
I often see an elevated CRP but low sed rate in CFS/FMS, which is uncommon in other illnesses as both sed rate and CRP elevations suggest inflammation. In lupus that is significant enough to cause fibromylagia-like symptoms, I usually see the sed rate also being elevated.
Bottom line here? What is your sed rate? If over 15 (high for FMS/ CFS) or if you have other symptoms rare in FMS but common in lupus (e.g., pleurisy or pericarditis, fever, inflamed red and swollen joints, a persistent rash on your face/cheeks called a "butterfly rash," or rash elsewhere which is sun sensitive), I would consider having your family doctor consider an autoimmune profile looking for other autoimmune illnesses. In the vast majority of those with FMS with an ANA of 1:320 or less it turns out to be, basically, a normal and not significant finding. It does encourage my giving adrenal support though.
In noting the symptoms above, feeling feverish is common in CFS, but actually having fevers is uncommon (despite this being part of the diagnostic criteria sometimes used). Feeling like there is arthritis is common in FMS but red swollen joints are uncommon. Chest wall pain and tenderness are common in FMS, but actual inflammation of the lung (pleura) and heart linings are rare. Rashes are common, including face flushing that comes and goes over hours, in CFS. But thick face rashes that persist over weeks to months (like the butterfly rash of lupus) are uncommon. Small red spots all over the body that persist despite seeing a dermatologist (or a dozen) are common in CFS and usually go away with Diflucan treatment of the Candida (called an ID Reaction). Rashes that are very sun sensitive are less common in FMS though, and more suggestive of lupus.
Having said this, I would add that though most with fibromyalgia do NOT have lupus, lupus will commonly trigger a secondary fibromyalgia. When the lupus symptoms are associated with severe insomnia (though lupus can cause insomnia) and are associated with widespread pain and fatigue that persists despite standard lupus treatment, treating for a secondary fibromyalgia with the SHINE Protocol can markedly decrease symptoms and improve energy.
Hope this is helpful.
Love and Blessings,
Dr. T
Help for PCOS and facial hair in women
Dear Dr. T,
I have excess facial hair growth, and my doctor told me I had PCOS and a high testosterone. Help!
Dear Susan,
When you see elevated DHEA and/or testosterone in a woman not taking DHEA or testosterone, there is a high probability they have PCOS (Polycystic Ovarian Syndrome). This is so even if they do not have ovarian cysts, and often reflects insulin resistance driving testosterone production. Treatment often helps their CFS and may restore fertility as well.
Be sure you are not taking any supplements with DHEA or testosterone.
Treat by:
|Eliminate sweets — which worsen the insulin resistance. Stevia is OK. See my book Beat Sugar Addiction NOW! for help with this.
|Metformin (prescription) 500-1,000 mg 1-2x day (usually I keep it at 1,000 mg a day). It will cause B12 deficiency if not taking B12 along with it, so you need to take a multivitamin with it. The Energy Revitalization System vitamin powder handles this easily.
|Cortef (prescription) up to 15 mg a day if symptoms/labs suggest the need for adrenal support (e.g., you're irritable when hungry). Adrenal expert Professor William Jefferies routinely recommended ultra low dose cortef for PCOS.
|Weight loss and exercise. The weight loss is easier after you do the above.
|Though the medication Spironolactone can help decrease excess facial hair growth in general in PCOS, this medication can severely flare symptoms in CFS/FMS patients, so I do not recommend it in this population.
|Birth control pills can help the menstrual irregularity if it persists despite the above.
Love and Blessings,
Dr. T
Peri-Menopausal Hormonal Shifts Triggering Fibro Pain
Dear Dr. T,
For nearly the past six years I've been noticing all the changes that have been developing with the peri-menopause stage that I have been in, particularly since the summer of 2009. I wanted to provide this information to you as I thought you would find my discoveries very interesting, or possibly similar to other people with FMS or whatever is going on with my body since 1986.
My mother (not blood related) dealt with terrible migraines before menopause and she was miserable. Her migraines ended with menopause. I describe my body pain like that, especially my neck and shoulder area. I've been tracking my pain now for at least three years and my pain stopped when my period began, but the pain returned a week later until the next period would start, etc.
Sometime in 2009 (late summer), I stopped having periods for four months. It was totally awesome. I absolutely had no pain anywhere in my body and I was just so energized. Unfortunately, my period came back in December and I wasn't happy about that. My periods have always drained me, even with minor spotting. Pain and feeling bad fatigue was the key indicator to when my period or spotting would start, and then all pain would end.
After two periods in December, January (possible February) of 2010, I'd had it with the periods again. Against my better judgment I went back to my doctor for birth control pills to control the bleeding and cramping. I started a nightmare of bleeding for six weeks that started at the end of March 2010. I convinced my doctor to give me progesterone to get my cycle in some kind of order and of course to stop the bleeding (that was in mid April). I stopped the progesterone (not sure exactly when). I started spotting at the end of July 2010 and spotted off and on through October 4th. I was miserable with on and off spotting — which caused pain and fatigue for six months. Since November 1st, I have been pain free because I have had no periods. I occasionally do spot, but I don't get the intense pain I use to. I did some spotting last week and had some fatigue but no major pain. I truly believe that the key to my pain all these 20+ years has been related to hormones. My pain and fatigue remind me of hormone induced migraines.
I'm not sure if I'm looking forward to menopause, but if that means no pain, then bring it on — I think. I really could do without the spotting and I do hope my period never comes back. If there is way I could bottle the formula of what is going on with my hormones, I would.
If you have any comments about my findings, please let me know, I'm very curious to know what you think. I hope all of what I wrote in this email makes sense. It is incredible to have no pain. My pain as never all over like some FMS people have. My muscle pain occurred in my neck, shoulders, sometimes arms and back area (back problems since herniating a disk in 2007).
Dear Jill,
I appreciate you sharing your experience. I recommend people follow what feels best, and it sounds like working from home does so for you. For people to get well so they can go back to the job that made them sick in the first place (or a similar one) is a bad idea;-)!
As you experienced, hormonal fluctuations can trigger fibromyalgia pain just as they do migraines. In my experience, where with migraines it is more the fluctuating levels, in fibromyalgia the problem is more the drop in hormone levels that occur around one's cycle that triggers pain and other symptoms. Because of that, in the setting you discuss I will sometimes give the birth control pill for five months solid (without a break week each month) so women only need to go through the symptoms associated with hormone levels dropping one week every five months. As women approach perimenopause, and once they no longer need birth control, I am more likely to give a very low dose of bio-identical estrogen (bi-est 1/4 mg daily) and progesterone (30 mg of topical cream or 100 milligram by mouth daily) every day (without intermittently stopping as needed for the more potent birth control pills)
Love and Blessings,
Dr. T
I am a long-time sufferer of fibromyalgia and have been diagnosed with chemical depression. Lately I've been having a lot of aches & pains all over. What do you recommend to help alleviate this and in what dosage?
Thank you,
Hi Vickie,
I suggest reading my book "From Fatigued to Fantastic!," which explains how to get well in detail. The information on the SHINE Protocol and my free "Symptom Analysis" program can also be a good start for this. And you should also review the articles on depression at my site. Depression is a host of different biochemical issues. Treatment with the T3 form of thyroid (not the standard Synthroid which does not work, but rather Armour Thyroid, which can help depression in repeat studies), nutritional support (numerous nutritional deficiencies aggravate depression; this can be simplified with nutritional support, such as the "Energy Revitalization System" vitamin powder, which you can find at my website and in most health food stores). If it is an anxious/irritable depression called "atypical depression," the nutrient chromium at 600 mcg a day can help (give it 6 weeks).
These are just a few starting points.
Love and Blessings,
Dr. T
My doctor says I'm due a tetanus shot, but I'm wary of vaccines making me sicker worse (I have CFS). How important is a tetanus shot?
I'm 26 years old, and my PCP said it has been over 10 years since I got my last tetanus shot. I am wary of vaccines because I think I may become sicker than I am. Is a tetanus shot one of the more important vaccines? Would it make sense to check the tetanus antibody titers, and if they're positive, skip the vaccine?
Hi John,
The tetanus vaccine is very unlikely to flare CFS/FMS. It is reasonable to take it, especially as it has been tolerated by you in the past. An argument can also be made to simply repeat it if you get a worrisome dirty injury (e.g., stepping on a rusty nail), especially if you've had at least 5 tetanus or DPT shots in your lifetime.
By way of background, unlike most infections people are vaccinated for where everyone else who is vaccinated protects you from getting the infection even if you are not vaccinated (called herd immunity), tetanus is not caught from others but rather from organisms in the soil. In the Civil War, it is said that as many died from tetanus as from gunshot wounds. And tetanus is as present in the soil now as it was then.
Because of this, I consider tetanus a key vaccine for children to receive as well as 4 boosters. Beyond that, though standard U.S. recommendation is to repeat each 10 years, I feel the U.K. recommendation is more reasonable — which is that once you've had 5 tetanus shots, you are considered to have lifelong immunity (though high risk patients such as gardeners should have shots every 10 years shots). The standard immunization schedule includes these 5 injections by adulthood (in the DPT vaccine). If you have not had the 5 tetanus shots in the past, I would simply get it.
Hope this is helpful.
Love and Blessings,
Dr. T
I'm taking Amitriptlyine for sleep problems, fibromyalgia and depression. Is there an alternative that doesn't cause weight gain?
I've been taking 150 mg of Amitriptlyine at bedtime for about 2 decades. It was prescribed to help me get a better nights sleep, assist with my fibromyalgia and for my depression. I'd like to come off it and switch to something that will allow me to lose some weight and I'm wondering what suggestions you might have. I plan on seeing my primary care physician in the next week or so and I hope to have some suggestions for her based on your recommendation.
Thank you for all you do!
Dear Vickie,
Here is info that can help your physician:
In my practice in this setting, I decrease the Elavil by 25 mg a night as able every 1-2 months until down to 25 mg a night, and thereafter by 5 mg each month. You can substitute a bit of Doxepin (10 mg for each 50 mg of elavil) which makes it easier to come off the elavil, helps sleep, and does not seem to trigger the weight gain. Many other sleep Rx (natural and Rx) can help as well (see Sleep and Insomnia). The medications Neurontin, Ambien (up to 10 mg) and trazodone (up to 50 mg) can be very helpful for sleep and to help you wean off the Elavil.
Hope this is helpful.
Love and Blessings,
Dr. T
Why does hypothyroidism cause digestive problems?
When Addison's Disease, or adrenal fatigue, causes nausea and vomiting, how does that happen? What is the mechanism? How are the adrenals and digestion linked? Also, I've read that there is a digestive component to hypothyroid. Can you tell me anything about that?
Dear Tricia,
I do not know the mechanism behind the nausea and vomiting seen in Addison's. It is simply part of the process.
Thyroid is critical for healthy bowel contraction (called peristalsis) and this decreases in hypothyroidism, which results in both constipation and backwash of bacteria into the small intestine triggering spastic colon-like symptoms (see Small Intestinal Bacterial Overgrowth (SIBO)).
Love and Blessings,
Dr. T
What are your treatment recommendations for people with persistently low BP? Does this contribute to brain fog?
Some people with fatigue are consistently running in the 80's-90's systolic. They may not be syncopal or orthostatic, but just tired. Sometimes it comes up a little with an IV, but doesn't stay. I can't help but think this contributes to brain fog and fatigue. These are often young people without evidence of heart issues. What do you think?
Dear JP,
[Initial answer from Andre, a colleague of Dr. T]
This is a common phenomenon in adrenal fatigue and it is usually due to a low aldosterone and associated decreased vascular volume. These individuals will benefit from adding Fludrocortisone to the Cortisol dose which usually increases water reabsorbtion from the tubules adding to the volume. I usually start with 0.05 mg dose but in individuals with such low diastolic numbers I would start with 0.1 dose.
[From Dr. T]
As Andre notes, adrenal support is key. I would clearly add the florinef, and the younger the patient is (under 23 years old), the more likely the florinef is to help.
In addition to low adrenal function, the dysautonomia also contributes to low BP as well as NMH and POTS (drops in BP when standing or exercising, which often coexists with the low BP). So also consider, in addition to cortef and florinef:
|Salt and water load.
|A trial of Dexedrine (up to 20 mg a day to stabilize autonomic function).
|SSRI's (e.g. Prozac) can also stabilize BP.
|Midodrine (proamatine 5-10 mg up to 3x day before exercise; but not after around 5 pm to avoid high BP during sleep when lying down). In severe cases this may help. The FDA was threatening to pull it off the market because they wanted more data on it, but recent reports suggest they relented and it will stay available.
Love and Blessings,
Dr. T
Wants to say "thank you" for the miraculous pain relief.
Dear Dr Teitelbaum,
My wife Beth took D-ribose 5,000 mgs TID and the generalized chronic pain — especially in her feet — and low back has improved 80% in just 2 days. Her feet haven't felt this good in 20 years. It's miraculous. She says she just wants to kiss you. She thanks you from the bottom of her "soles." And I thank you too.
God bless you.
Dear Trent,
Glad Beth is feeling better. The ribose is pretty cool stuff, and you may also want to get her some Curamin (2-3 a day), which may get rid of the rest of her pain;-)
It is amazing how pain can go away with natural remedies.
Love and Blessings,
Dr. T
What can you tell me about magnesium and its role in CFS, fibromyalgia and chronic pain?
I have several questions related to magnesium.
|Do you believe that a magnesium deficiency could be a cause of
conditions such as fibromyalgia and CFS?
|Are chronic neck muscles a common symptom of these conditions?
|What form of magnesium do you suggest to patients?
|Are there any promising new treatments or forms of magnesium entering
the market that you endorse?
Thanks you.
Dear KS,
See the specific answers to each question below.
[A bit of overview: The tight tender knots that occur in muscles, called "trigger points," are the bunched up center of a muscle stuck in the shortened position. Muscles get stuck in the shortened position when they do not have enough energy (like a spring, it takes more energy for a muscle to relax than to contract). Magnesium is critical for energy production in the muscle, and therefore muscle relaxation. In fibromyalgia (and the related condition CFS), muscles are contracted throughout the body causing widespread pain, tightness, tenderness and trigger points.]
Do you believe that a magnesium deficiency could be a cause of
Answer: It absolutely is an important contributing factor. Most Americans are magnesium deficient, as food processing decreases the magnesium in the diet from the normal 650 mg a day to under 300 mg a day — a massive deficit for our bodies.
Are chronic neck muscles a common symptom of these conditions?
Answer: Neck and shoulder muscle tightness are normal in CFS/FMS, and in much of our population in general.
What form of magnesium do you suggest to patients?
Answer: Oxides and hydroxides are poorly absorbed, so magnesium glycinates or chelates are good choices. For those who get diarrhea, sustained release magnesium is awesome (see next answer).
Are there any promising new treatments or forms of magnesium entering
Answer: Though in general, magnesium glycinate (as is found in the Energy Revitalization System vitamin powder) is the best "bang for the buck," some people get diarrhea from magnesium. For these folks, a special sustained release magnesium (made by Jigsaw Health) has been a wonderful blessing. A little bit more expensive than other good forms, but people love it!
Hope this is helpful.
Love and Blessings,
Dr. T
Are there any supplements that might help me with my nerve pain?
I am 24 years old. I do not have a medical background, but I have had to learn all of the medical jargon relating to my condition since so few doctors understand how to treat complications from hernia pain.
When I was 19, I had a bilateral inguinal hernia repair. Everything seemed to be going fine for about 2 years. After the two year mark, I started to have pain that would not go away. At first, my pain was mild, about a 2.5 out of 10. At first, my pain would come and go. Over time, my pain did not go away. It ended up being an excruciating 9.5 out of 10 all of the time. I went to numerous specialists and even went through pain management. The overall consensus was that nothing could really be done to help me. The pain management doctor had me on Lyrica and Celebrex.
Just when I had given up hope, I found a doctor at John Hopkins Medical School. I traveled from Florida to Baltimore to have a consultation with him. He said that my pain was defintely nerve related. He ended up doing nerve resections on both sides on the ilioinguinal nerve, iliohypogastric nerve, and he decompressed my lateral femoral cutaneous nerve on my right side. It has been 4 months since I have had the surgery. I am feeling much better now. I am still having pain about a 4 out of 10 on my right side, all the time. I have virtually no pain on my left side.
Before my surgery with my doctor, I had been put on Lyrica by my pain management doctor. It seemed to help me. It definitely took the edge off of my pain.
My insurance company (Humana) does not pay for the Lyrica. I was getting a 1 month supply of Lyrica from my pain management doctor, since my insurance does not pay for the Lyrica. Here in Florida, there were new regulations enacted recently that prohibited the pain management doctors from giving more than 3 days worth of samples. Bottom line, I can no longer get Lyrica from my pain management doctor or from the pharmacy since Humana will not pay for it. It is cost prohibitive.
The doctor who did my surgery told me to discontinue the Lyrica. I have been off of it for about a month now.
My doctor told me to hold off another two months to see him in case the pain clears up. I am willing to think outside of the box as far as what might help speed getting rid of the pain.
Are there any supplements that might help me with my nerve pain? I looked at your website and it was not totally clear as to what supplements might help me. Can you please suggest whatever supplements might help me?
I do not want to take anything which might interfere with healing my nerves, but I thought that there might be a natural supplement that might help me. Also, I have bought your book Pain Free 1-2-3. I read about the cream that contains Ketamine, and how it sometimes helps with nerve pain. How do I find a physician that would be willing to prescribe Ketamine cream? Is it something that I would have to have a pain management physician prescribe? Would the Ketamine cream create any problems as far as healing my nerves goes?
Thank you for your time.
Michael P
Dear Michael,
I am glad you found someone who could help you and are recovering!
A question — Where is the pain? You note on the "right and left side," but where? Is it in the location of the surgical scars as well, and did the surgery you just had cut through the scar areas? Sometimes, injecting the entire line of the scar site with lidocaine can relieve pain at a distance from the scar.
Was the pain along your outer thighs as well (lateral femoral cutaneous nerve compression usually triggers pain in that area, called "Meralgia paresthetica")? If that persists as part of the pain, in addition to the surgical decompression, an injection into the nerve area could give further relief if there is persistent nerve compression. Sounds like this is a minor component, as he did this nerve surgery on the right side, where you still have pain, and not on the left, where the pain has resolved.
If the pain is nerve pain, treatments focusing on this can help. If the Lyrica helped but is too expensive, have you tried neurontin , elavil or flexeril, or one of the many other options discussed in the nerve pain chapter of my book Pain Free 1-2-3? A topical pain gel which your doctor can prescribe (by calling ITC Pharmacy at 888-349-5453; Ask for the "Nerve Pain Gel," especially if brushing the skin lightly over the site triggers pain, which suggests a close to the surface trigger. It's worth giving the gel a two-week trial over the area of the pain. I would NOT recommend a cream that is only ketamine, though this can be helpful as one of many components in a topical).
Beyond that, an exam is needed to better address the source of the pain to look for muscle trigger points, scar pain, etc.
Also, I find the supplement "Curamin" (1 cap 3x day) to be very helpful for many kinds of pain. Give it 3-6 weeks to work (though it often works quickly). The effect is often wonderful for chronic pain from a surprisingly broad array of causes.
In addition, as discussed in the Pain Free 1-2-3, the Energy Revitalization System vitamin powder may help nerve and other pains (because of the B12, B6, magnesium, inositol and other nutrients), as can lipoic acid (300 mg 2x day; there is 100 mg in the vitamin powder) and Acetyl-l-carnitine (1,500 mg a day).
Love and Blessings,
Dr. T
As a physician, how do you decide what antiviral or antibiotic to use, and when?
Dr. RM
Dear Doctor,
It does get confusing, and I think sometimes the labs simply make it more confusing. A positive IgG simply means old infection, and for many of the tests we check, are elevated in over 95% of healthy patients. It is when we see VERY high levels that the test may suggest chronic infection or viral reactivation. Of course, the unanswered question is what level is considered VERY high?
Unfortunately, the testing therefore has poor sensitivity, specificity, and offers legal risks as well. If a test stands out as very high relative to the others you've seen, then it offers "food for thought" shifting me toward using an anti-infectious agent that is effective against that organism.
When do I consider antibiotics and antivirals, and how do I pick?
If a patient is refractory to the rest of the SHINE protocol at 4-6 months, I consider treating for other occult infections and also check an anti-transglutaminase antibody to r/o Celiac disease (and would consider the latter test in even the initial labs). The labs raise an index of suspicion as to which anti-infectious to consider once I've decided on an antiviral VS an antibiotic. The symptoms, though, are key to whether I will go with an antibiotic vs an antiviral.
Here is what I base this choice on:
I favor antivirals if the patient exhibits predominantly flu-like symptoms, with debilitating fatigue and little or no pain or fever. People with these symptoms are more likely to have an underlying persistent viral infection, such as HHV-6, CMV, or EBV. In these cases, special blood tests for HHV-6 (I consider valcyte if 1:640 or higher) and CMV (a CMV IgG-consider valcyte if 4.0 or higher) can help identify who is a candidate for the antiviral Valcyte.
I favor antibiotics if the patient has a fever over 98.6°F — even 99°F — and/or lung congestion, sinusitis, a history of bad reactions to several different antibiotics (people misinterpret this "die-off" reaction as being an allergic reaction), scabbing scalp sores or other chronic bacterial infections. People with these symptoms seem to be more likely to have bacterial, mycoplasma, or chlamydia infections that respond to Zithromax 500 mg a day (revised form the earlier 600 mg a day dose) or Minocycline 100 mg BID.
For more on this, see "Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure."
In time, as research is done on which antivirals help in XMRV positive CFS patients, this will add more treatment options.
Hope this is helpful.
Love and Blessings,
Dr. T
What are your thoughts about getting the Hepatitis B vaccine?
I have a patient doing well on our protocol who works for a chain pharmacy and will be giving out flu vaccines in the fall and part of the company policy is that employees have the necessary vaccines which includes Hepatitis B. She states that she has reservations getting the vaccine and can opt out by getting a doctors note explaining her condition and how the vaccine can potentially exacerbate her sx's. Has anyone come across this situation and how could it best be handled.
Thanks in advance.
Dear Edgar,
I think Hepatitis B is an important vaccine. Hepatitis B is epidemic in Asia, and it is only a matter of time till it becomes so in the US without the immunization.
On the other hand, some people with CFS are wary of vaccines aggravating their illness. Overall, more people have their CFS benefitted than flared from vaccines. A Scandinavian vaccine even showed frequent vaccinations (if memory serves it was for Staph) dramatically improved fibro, but there was no money in it so that treatment was abandoned.
For this patient and Hepatitis B vaccine in general, here is the bottom line I give: As noted below, check Hepatitis B antibody titres. If +, then they are immune and can be excused from the vaccine. If not +, take the series of 3 and don't worry about it (the worry is more likely to trigger the flare than the vaccine itself). The key point? If they do not seroconvert after the series of 3 vaccine injections, THEY SHOULD STOP THE VACCINE, and write them a letter of support if this occurs. The patients I have seen flare are only those who did not seroconvert, and continued to receive ongoing injections beyond the normal series of 3.
Love and Blessings,
Dr. T
What can I do for ringing in the ears?
Ginkgo biloba, 240 mg a day, can help after 6 weeks (but usually does not).
The ringing in the ears, called "Tinnitus" can be difficult to treat if simply chasing that symptom, but often goes away along with the overall symptom process with treatment.
Helps to sort by type of tinnitus:
Pulsatile throbbing matching the pulse suggests a tight muscle compressing a blood vessel near the ear. It's not dangerous, but like a blood-pressure cuff, makes the pulse audible. The treatment is the SHINE protocol, which tends to release the muscles in general, and sometimes a body worker who does good head and neck muscle release.
A high pitched ringing sound which is steady from moment to moment, though it vary over time (simply not with the pulse). This suggests a neurogenic source, which can be simply an inner-ear process (and still be impacted by eustacian tube blockage associates with candida and autonomic dysfunction from head and neck trigger points) or part of a broader neurologic process. I would add the Energy Revitalization System vitamin powder (which helps the nerves with B12, B6, inositol, magnesium and other nutrients) and add lipoic acid 500 mg a day plus acetyl-l-carnitine 1,500 mg a day, which all can help the nerves recover — though this can take 3-12 months, so you need to give this treatment time.
Most often, with SHINE the tinnitus goes away over time and the patient forgets about it. If not, a hearing aid specialist can make a "masker" which cancels out the tinnitus frequency, so that you no longer hear it.
Love and Blessings,
Dr. T
Recovering from heart failure using ribose and magnesium orotate.
Dear Dr. T,
I went to my doctor yesterday for follow-up on blood work, and he was excited that everything he has been concerned with has shifted to the positive.
I then related to him our story of D-ribose + Magnesium Orotate! He has been my doctor through all of my battles with heart valve replacement and lung decortication pleurodesis. He was utterly amazed that I was able to switch from only being able to walk 100 feet to walking two miles after beginning the recipe of Magnesium Orotate/D-ribose.
You are a very kind person, and have given me the greatest gift of all, my life. We are back in Alaska and it is such a joy to be able to walk, breath freely, and enjoy the wonders of a life without chest pains.
Thank You Again for Giving Me My Life!
Dear Bill,
You'r very welcome and I'm so happy you're on the road to recovery.
Love and Blessings,
Dr. T
Are bio-identical hormones safe when you have a clotting mutation?
I'm following up after our consult earlier this spring. Back then you very kindly helped me understand my labwork and thyroid/adrenal condition. Since then I've improved modestly with Cortef and Armour, as well as Dr. T's supplements. However, my estrogen/progesterone are still out of whack, and my endocrinologist says he doesn't know his way around bio-identical hormones. He sent me to an OB GYN for that — but then she wanted to put me on the Pill! When I asked for bioidenticals instead, she refused. Then she said, "I don't think you can take estrogen anyway because you have a clotting mutation." I don't know whether this doctor was correct about the contraindication, or if she was just angry that I didn't want to go on the Pill.
Can you help guide me to reliable information about whether transdermal bioidenticals are safe for me, given that I do carry the Prothrombin Factor II clotting mutation (heterozygous)? I would like to at least be armed with information — so that I can either educate my doctor, or take it to a different doctor who is more versed in bioidenticals.
Please advise, and many thanks.
Hi Linda,
The issue is complex enough that I cannot guide you directly as other factors need to be considered in each case (e.g., the history of blot clots/phlebitis in your case, other coexisting clotting issues you might have, the severity of estrogen deficiency issues in your case, etc.), and I defer to your endocrinologist (or hematologist if they are not familiar enough with the issue to guide you).
Having said this, I'm happy to offer some general info on this issue, which hopefully will be helpful to you and your physician:
|Factor 2 defects are fairly common (about 2% of the population).
|Estrogen for menopause (e.g., premarin) increases clotting risk in those with factor 2 by about 2-4 fold. I know of no research looking at bioidentical hormones with factor 2, though in general I have found Premarin is associated with a higher clotting risk.
|Birth control pills increase the risk of clots in Factor 2 deficiency about 16 fold, so I would NOT use birth control pills for estrogen deficiency over other alternatives in most cases.
|If there is no history of clots, then many would consider natural progesterone replacement (e.g., Prometrium, NOT Provera) to be OK. The low progesterone causes as many symptoms as the low estrogen, so considering simply using 100 mg of prometrium at bedtime may be a helpful option for your physician to consider.
|In general, I would avoid estrogen supplementation in those with a known factor 2 deficiency, unless the severity of the low estrogen symptoms made it necessary. Other alternatives for hot flashes include the herb Remifemin (black cohosh by Enzymatic Therapy, which is non-estrogenic despite some inaccurate information out there. The dose is 2 twice a day for 2 months, then 1 twice a day — give it 2 months to see the full effect).
So I suspect you'll find the problems can be effectively treated leaving off the estrogen part of therapy. This is often needed in those with CFS/FMS for a number of reasons, and as there are so many approaches that can help you get well, people find they can do fine even leaving off the estrogen.
I hope this is helpful.
Love and Blessings,
Dr. T
How is lactoferrin for treating persistent Candida? (Hint: It's very promising)?
I have a long-term chronic case (over 12 years) of systemic Candida from years in India, antibiotics, low immune function from bad diet, illness, parasites etc, and many other factors.
I can usually control it with a PH balance alkaline diet of only meat (eggs fish, etc), mostly green veggies, and occasional alkaline grains and some legumes. But after a while I go nuts and all the repressed desires come out and there goes the diet out the window.
I have it everywhere — brain, gut, eyes, ears, vaginally, skin. I thought this time I would die of it but got on the dilfulcan again. On for 6 weeks along with milk thistle, dandelion extract, probiotics, and your Anti-Yeast.
I can get the yeast to go away but somehow my immune system, endocrine system or digestive system must not be strong, and so it comes back again. Of course its always there in everyone, but in my case, it goes out of control fast and furiously.
I can't eat fruit, stevia, or chocolate as you suggest. Even yogurt and most grains set it off.
What I found useful is eating pure virgin coconut oil daily. Kills fungus. Also good in ears and on skin.
If you have any thoughts on suggestions that come up, I am open and eager to hear anything.
Love and blessing,
There is a subset of people who have persistent or recurrent candida requiring long term treatment with Diflucan. Though 6 weeks may be enough for most cases, some will need it for years. For many, an intermediate approach does the job. This would be, after taking the diflucan for 6-12 weeks, instead of stopping it, ask your doctor to give it 200 mg twice a day, but only 1 day a week (e.g., each Sunday). If this does not work, then the options for the meds are:
|Continuing the Diflucan long term.
|Switching to Sporanox (expensive but going off patent soon) or Nizoral (cheap, but can lower cortisol levels — helpful in some, problematic in others. A morning blood cortisol, or an adrenal stress index salivary cortisol will answer this).
|Some with drug resistance that does not respond to the above will need a new (and very expensive — so best in those with prescription insurance) antifungal called "V Fend." This is rare.
At least one of the above options usually handles the medication part well.
For the probiotics, use Acidophilus Pearls 2 twice a day.
I would not presume that all the symptoms are Candida, and you do not likely, for example, have it in your brain (you'd be dead) even if you have brain fog or neurologic symptoms. Instead of presuming it is all yeast/Candida, best to look at the actual symptom patterns. For example, much of the bowel symptoms and brain symptoms can be from bacterial infections (see the article on "SIBO" — Small Intestinal Bacterial Overgrowth) which is actually caused by low thyroid. Put differently, if you address the whole process at once, your body may be better able to keep the Candida cleared. Also, do my free symptom analysis program to help you sort it out.
The info you sent on Lactoferrin is very interesting and promising. Searching on the research done on lactoferrin and Candida, what I have seen is done in newborns, mice and test tubes, so it is early to determine its effectiveness with certainty. On the other hand, the research suggests it may be VERY helpful in chronic Candida. It has a long safety record and I think is worth trying. Interestingly, the research suggests it is inactivated by sugars in the diet, so keep these low when you take it (I know you already do). Beyond avoiding sweets, you may find you can relax some of the other dietary restrictions, but you'll know by how things feel to you.
I have found the info on Lactoferrin promising over the years, but frankly never got around to exploring it as actively as I would have liked. Your question encouraged my doing a proper literature on it, and now I remember why I found it so promising in the past;-)
The research also suggests that the lactoferrin must be an "iron depleted" form, and (from what I've found available clinically) should be the "apolactoferrin " form. The only form I found that fits this is "Apoferrin" which in the U.S. appears to only be available from Life Extension, which I think is a good group. Take 1 a day.
I would also take it a few hours away from salt, magnesium, calcium, and sugar (basically take it on an empty stomach 1-2 hours away form food — perhaps at bedtime).
Hope this is helpful. Please let me know haw the lactoferrin works for you.
Love and Blessings,
Dr. T
Should I do XMRV testing?
It depends. If the cost (about $650 last I checked) is not prohibitive, and you have family or doctors treating you like you're nuts, it may be worth it. Also, if you are in in litigation with an insurance company it may help (the insurance company will likely ignore it, but the judge may be more open to it — see Battling Your Disability Insurer for CFS/Fibromyalgia Benefits? You're Not Alone!). Do the entire panel to avoid a false negative test. It will not affect treatment though at this time, so it is not critical to do. For more on the pros and cons of testing, read some of the XMRV testing and treatment experiences shared by members of our EndFatigue discussion board.
Why do we feel tired after lunch?
The energy crash immediately after lunch occurs as our nervous system shifts from being "sympathetic dominant" (adrenaline based) to parasympathetic dominant (described as "the old man after dinner"). It does this so it can send blood to the intestines (to digest the food) instead of sending it to the brain and muscles: less blood to brain = more sluggish.
An energy crash that occurs 1-2 hours after eating reflects too much sugar in the meal. The blood sugar spike causes a large rise in insulin (which turns the calories into fat). This drives down blood sugar an hour later causing irritability and anxiety followed by a fatigue slump.
Can you comment on why, from a psychological or behavioral point of view, we rationalize away our poor eating choices?
Happy to answer it but I'm too busy!
Just kidding, but this is how most people feel — too busy and overwhelmed to deal with it — so they just grab something. That's why we give easy to follow tips, even including how to cheat, for those with busy or stressful lives.
Ribose and the antiviral "Amantadine" (Symmetrel) helping her CFS a lot. We sometimes forget this cheap older antiviral — which helps a subset of CFS patients! Also, a simple way to see if electrical appliances in the bedroom are aggravating your CFS.
Dear Dr. Teitelbaum,
I loved today's newsletter about virus control for CFS. My mother and I both have fibromyalgia and lupus, and we have found that when we take the antiviral "Amantadine," we feel better. We are in Canada, so I don't know if it's available in the USA. I am wondering if you would consider a test for fibro/CFS with Amantadine. There are few to no side affects with amantadine, unlike AZT. Amantadine only works on "A" type viruses though, so it worked on the swine flu. I guess you would know right away if it would work on the CFS virus by knowing if it is related to the "A" type viruses.
I am glad to finally find a way to reach you, and to thank you for giving people's lives back! My daughter also has fibro, and the D-Ribose helped so much, that she wanted to celebrate her new found health in a big way, and entered the Mrs. Idaho pageant! The D-Ribose helps me as well, but I have found that it is so good for you that it strengthens your immune system. This is not good with lupus, so as long as I only take one scoop/capsule in the morning and one in the afternoon when I am dragging, I feel better. If I take more, the lupus flares up quite badly.
I am on disability so I am saving up to try some other products that you produce. I wish you could get the Nobel Peace Prize for what you are doing for these diseases that have become epidemic!
When I was searching for my own causes and remedies, I bought a machine that measures EMFs (electro magnetic frequencies), and then I found a way to lower the dangerously high level of EMFs in my bedroom, which helped improve my health about 50%, so one of the causes of extreme fatigue and fibro symptoms is EMF sensitivity! I'm sure you already knew that, but I am just verifying it to be true.
Thanks again. I hope some of my info has helped you in some way.
Dear Sheila,
Thanks again for reminding us how helpful some old treatments can be. I am glad the ribose (Corvalen) is helping you and your daughter!
Symmetrel (amantadine) is an old antiviral used for flu prevention. In can also be effective against certain stomach infections common in CFS and was shown in a study presented at the Ratna Ling conference to be helpful in a subset of CFS patients. It also has the benefits of being a cheap old prescription, fairly safe and well tolerated and also it raises levels of the neurotransmitter Dopamine, which is often low in CFS. It is available in the U.S., and the dosing is 100 mg 2x day.
Some with CFS are sensitive to electromagnetic fields, especially in the bedroom (e.g., from alarm clocks near our heads, electric outlets, etc). Though there are plug in devices that can help neutralize these, there is a very simple test for this. Simply turn off the circuit breaker that serves your bedroom when you go to bed for a few nights and see if it helps. If so, do this at bedtime (can use a battery powered alarm clock and leave a flashlight by the night stand). Though not a common problem, it does occur and this is a simple and free way to tell .
Love and Blessings,
Dr. T
What is the safety of saccharin (Sweet'N Low) vs. Splenda and aspartame?
Dear Dr. T,
After just watching the interview with Dr. Teitelbaum I was surprised to hear that Sweet'N Low was a safer substitute than the others. There was a nasty message about the pink package that was related to cancer a few years ago. Is there any truth to that? Thanks for your help!
Dear Maryann,
The questions raised about saccharin (Sweet'N Low) and bladder cancer were shown to not be real, and were actually disproved many years ago. It actually has an excellent safety record compared to Nutrasweet/aspartame and Splenda. The latter two are far more profitable though (newer patents) so the safety of saccharin is not publicized (no money in doing so).
I consider stevia to be a good , safe and natural alternative (the ones that taste good include those from Body Ecology at 1-800-4stevia, whole leaf, and Stevita). Stay tuned to learn more about Susta, another new natural sweetener that tastes just like sugar!
Dr. T
Question about Adrenal Stress End and Tyrosine sensitivity.
Dear Dr. T,
The new book looks great!
I have a question regarding Adrenal Stress End that hopefully Dr. T can help with. This product contains 250 mg of L-Tyrosine.
Several clients have shown a pronounced sensitivity to L-Tyrosine (racing heart, agitation, diaphoresis, racing thoughts), even at doses of 100 mg, with effects seen within 1 hour of ingestion. There is a genetic component, as other family members typically are also reactive.
I'm pretty enlightened about amino acids and the biochemistry involved, but this has stumped me. I brought it up at the orthomolecular medicine conference and my fellow members were stumped also. Any ideas? Don't want my clients freaking out on me (that's a professional term, I'm a neuropsychologist).
Any ideas?
Dave R
Dear Dave,
Thanks! Glad you enjoyed my new Beat Sugar Addiction NOW! book ;-)
Tyrosine makes thyroid, dopamine and epinephrine/norepinephrine. In most with CFS, sympathetic overdrive is chronically present. As it exhausts, these symptoms settle, leaving the fatigue and upregulation of the Epi/NE receptors along with adrenal exhaustion. Though in most the tyrosine is actually beneficial, just as some cannot tolerate even tiny doses of thyroid, some may have reactivity to tyrosine. In some, I suspect it is because it momentarily bumps up epinephrine/NE in a sensitized person.
To see reactivity to 100 mg raises questions though. With people having an average daily intake of about 3,500-5,000 mg of tyrosine a day (an egg white has almost 1,000 mg), reacting to 100 mg raises why they do not react to their diet, or foods high in tyrosine (think back to the old days of needing to avoid tyrosine in those on MAO inhibitors). One could argue that the balance of other amino acids selectively effects its uptake and metabolism, but in that case taking it with food should make it OK to take. Suggests something else is active.
For those with the sensitivity, and we see a subset of folks with sensitivity to numerous nutrients and hormones essential to life in CFS/FMS, I would consider a special acupressure desensitization technique called NAET which I have seen be very helpful in many of these cases. Other sensitivities will usually be found. Overall symptom relief after about 25 treatments can be marked.
Also ask if they react to thyroid or iodine to see if that is the pathway at issue. Would NADH (raises dopamine) also cause reactions in the patient?
Hope this offers some helpful thoughts.
Love and Blessings,
Jacob Teitelbaum, MD
What is the link between infertility and low ferritin?
Hi Dr. T,
I have your book. I have FM and CFS and am a 40 year old female. I have fertility issues and for 3 years now issues increasing my ferritin level which is currently at 8. Whatever I take doesn't increase the ferritin. We started to inject the iron.
We have done 3 IVF cycles.
What is the link specifically to infertility and low ferritin? Does low ferritin produce low quality eggs? Why can't I absorb the iron through supplements?
Your help it greatly appreciated.
Dear Luisa,
The question is:
|Whether you are not absorbing the iron (most often caused by it not being taken on an empty stomach[food blocks iron absorption]. So take the iron at least 2 hours after eating (perhaps at bedtime, and also take 500 mg of vitamin C at the same time as the iron to help absorption. The IV infusions are reasonable as well.
|Whether you are absorbing the iron, but losing more than you absorb from heavy periods or bowel bleeding (your OB-GYN can help you assess by how many tampons you use during your monthly cycle and doing a stool test for microscopic blood). Low iron and also low thyroid each or together can actually cause both infertility and heavy periods. See if your doctor will consider a trial of thyroid hormone, even if your labs are normal.
It is not clear why the low iron causes infertility, but along with a low thyroid, is a common cause (even if the tests are normal). I would keep ferritin level (a blood test for iron deficiency) at least 50 in infertility, and aim for it to be even over 100.
In addition, I would add in the other treatments discussed in Effective Natural Treatment for Infertility.
This can be very helpful in helping you get pregnant ;-)
Love and Blessings,
Jacob Teitelbaum, MD
CFS or "Sleeping Beauty Syndrome"?
Dear Dr. T,
It appears that I may not have CFS but may have Kleine-Levin syndrome (really presents like CFS) but it's really hard to find any information on treatment of this.
Best regards,
Dear Stuart,
Wikipedia provides a nice overview of Kleine-Levin syndrome (KLS).
As opposed to CFS, which is associated with fatigue but decreased sleep, people with KLS sleep excessively during the day (approximately 18 hours a day, from where it got the names "Sleeping Beauty Syndrome" and "Rip Van Winkle Disease"). Also, with KLS, it is more common in men, associated with increased appetite and (in men) sometimes associated with hypersexuality. Unlike CFS, it tends to come in discrete attacks with long periods of feeling OK between attacks (average attack length 12 days; average time between attacks 6 months — not the usual CFS timing).
KLS is suspected to occur with hypothalamic dysfunction (same as CFS), so the CFS treatments (SHINE) may also help KLS. KLS is a diagnosis of exclusion with little understanding of causes or treatment, which simply means that if the doctor does not know what is wrong with the person, they may just give the person the diagnosis (as there is no real way to confirm if it is so or not, and no treatment choices to be made from the diagnosis) — so I would not attach to much to it unless the symptoms are very episodic. In the latter case, the diagnosis can help, as there is some knowledge about its usual course, which is that it often goes away in 90% of cases — which makes it good news to have the diagnosis.
In those with CFS with Hypersomnolence (increased daytime sleepiness as opposed to fatigue), more common causes are sleep apnea and/or narcolepsy. Narcolepsy usually improves with Ritalin or dexedrine, where KLS will usually not improve with these. Sleep apnea can be diagnosed by a sleep study and Narcolepsy by a MSLT test (done at the sleep study lab).
Hope this offers some helpful info.
Love and Blessings,
Jacob Teitelbaum, MD
My XMRV test came back positive. What do I do?
Dear Dr. T,
I have my XMRV test results back and will attach them to this e-mail. I would love to hear your thoughts and possible treatment options.
Dear Mike,
Thanks for sending the results. I will need to see a spread of results from a number of people to get a sense of interpreting them better (e.g.- is there a spread of positive and negative results?)
At this point there is no recognized treatment for XMRV, but many treatments that are effective for retroviruses in general. These hopefully will be tested (by individuals who will give feedback on the internet in the coming year and in treatment studies in the next few years). Most physicians will at least wait for the first wave of clinical experience to be reported on before prescribing anti-retroviral therapy.
In the interim, I would consider general antiviral therapies such as:
|Gamma globulin 2 cc IM (intramuscular injections) weekly for 6 weeks (called Gammar).
|Antiviral IVs with high dose vitamin C and thymus and licorice extracts.
Immune stimulating herbals and supplements.
These have been very helpful at the Fibromyalgia and Fatigue Centers, and have historically been very helpful in CFS patients. For more on viral infection treatment in CFS, see "Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure." In addition, overall treatment with the "SHINE Protocol" can markedly help. Our free symptom analysis program can determine what treatments will help YOU feel the best (it varies a lot from person to person)!
We will be keeping a close eye on people's experience (patient's, clinicians and researchers) with different antiviral regimens for XMRV over the coming year, and will be encouraging people to send us their experience (and have added a specific area for this on our Community Board for this). We will report on this in our newsletter as we get the info.
Meanwhile, please keep us informed of your experience with treatment!
Love and Blessings,
Jacob Teitelbaum, MD
I'd like to share the following email exchange I had with a Dr. Oz Show viewer who was upset at the way they covered the topic of "fatigue."
Dear Dr. T,
After dealing with CFIDS/Fibro for over 20 years, I was very excited to see you would be on Dr. Oz' new show. Unfortunately, I was shocked that so little information was given about the illness. Since the topic was Exhaustion Epidemic, it seemed to me that this show only furthered the misconception that the main symptom fatigue. The vast array of symptoms or a way to help diagnosis were not even discussed. I plan to email Dr. Oz as well because it seems he did a grave injustice to not only this illness, but the whole topic on exhaustion. Again, a topic for Dr. Oz, but when he mentioned Thyroid Armour (Armour Thyroid?) instead of Synthroid, is he even aware of the severe shortage and production issues? I also suffer from iron deficiency anemia, hypothyroidism and reactive hypoglycemia. Usually I would say that "any publicity is good publicity," but this seemed to me just an opportunity to get your name out there. I do believe you really want to help people, but hope you will be more careful about finding out the content of the show before accepting a guest spot. And I really hope you have a good enough relationship with Dr. Oz to discuss these issues, as I doubt I was the only person left feeling like a big "so what."
Lesley L
Many viewers were concerned that The Dr. Oz Show segment with me last Friday glanced over CFS and focused on fatigue and exhaustion, sometimes seeming to lump them together. I share this concern, and was very disappointed when I saw the segment. It edited out most of what I had said about CFS, including it NOT being regular fatigue but a separate, real and distinct problem. It also edited out my discussion on its causes and how to treat it.
Sadly, the best part of many shows ends up on the editing floor!
It is not Dr. Oz' fault, but represents a difference in communications.
When his producers called me the week before the show's taping (about six weeks ago and well before the XMRV research release), their focus for the 12 minute segment was simply overall fatigue. In our discussions, I moved their thinking to a larger focus on CFS, feeling that this desperately was overdue to be covered by Dr. Oz (and from there, Oprah). Happily, the show development moved in that direction, with them even picking two CFS patients for me to evaluate and offer treatment options to just before the show.
The focus shifted again the day before filming, as producers realized they had too much material for a 12 minute segment. So the patients were left out at the last minute. When the final taping occurred, it gave the impression that the show would play as taped, in which I was better able to discuss CFS causes, diagnosis, and treatment, as well as distinguishing it from regular fatigue. I was also disappointed when this was largely cut during editing.
What occurred was a good entertaining segment for those with day to day fatigue (as it was initially meant to be), but a horrible one for those with CFS who know they have it, as the CFS came off as being trivialized. I apologize for this, though it was not in my control. On the bright side, for those with CFS but without a diagnosis, identifying the combination of exhaustion and insomnia as a warning marker that you may have CFS has been leading many of you to the correct diagnosis from the show. Hopefully, it has also opened the door to having a segment on CFS or FMS alone.
So though it did not have the CFS focus we were hoping for (and that I was trying to move it toward), it does reflect getting a foot in the door, and I will be encouraging a show with a full segment on CFS and FMS so it can be covered properly. Having worked with and encouraged the Oprah producers to cover these syndromes for many years, I would note these simple observations:
Letters that are angry, and even abusive, likely leave them feeling the topic is still too controversial to cover. So venting may feel good sometimes, but if done without being reasonably considerate, it may simply once again push CFS/FMS OFF their "radar screen."
Letters thanking them for covering the topic, but noting how and why the coverage should be improved, and why it is important to cover, will more likely get what we want. It is OK to thank them for covering CFS and still note that:
|Dr. T had almost no time to discuss CFS.
|The segment blurred CFS with regular fatigue or depression — clearly not the case and a major disservice to those with the illness — requiring clarification.
|New research on a blood test for CFS came out since the show was taped.
|It would take a full segment, giving the expert enough time to speak, to properly even begin to cover the illnesses of CFS and fibromyalgia.
|Please consider a full segment on the topic, done sooner rather than later.
Please consider sending a gracious message noting the above to Dr. Oz at The Dr. Oz Show contact page.
Sorry if there were misunderstandings, but know that I am on your side — and Dr. Oz is as well.
Thank you.
Love and Blessings,
Jacob Teitelbaum, MD
Reader notes "Thank you. Got my life back with Ribose."
My name is Brooke. I have never done anything like this, where I have experienced such an impact on the quality of my life that I would be willing to sit down and write someone to tell them about it. My family is convinced I should write a book. I don't think so, but from what I've been told, my story is fairly remarkable.
I have been tired for longer than I care to think about. I am a 30 year old female and have been abnormally tired since I was 18 yrs old. It goes further back than that, but the real fatigue started around that age.
I have always been determined and strong willed. An athlete my entire life, I went on to play Division I college soccer at a University in Northern California. I received conference honors for my performance on the field my junior and senior years. I also did well scholastically. I had an overall 3.0. Not off the charts good but not too bad.
I remember over my four years in college going to countless doctors to check my blood for iron deficiency, thyroid problems, possible mono, and the list goes on. All results came back that I was "healthy" and that there was nothing visibly wrong with me.
I also remember walking to practice at 3 pm everyday agonizing over how I was going to make it through. I always did, but it was painful both physically and emotionally. I grinned and bared it and felt more like a robot than a human being most of the time, which roughly sums up in one statement what my life has felt like for the past 12 years.
My freshman year, as I a result of never feeling good, I became depressed. Not brutally depressed but definitely not myself. The fatigue and overall feeling of discomfort quickly escalated into an eating disorder. I eventually had to come clean to my coach as I had lost a ton of weight. My treatment plan if you will included some counseling and a prescription for Prozac. Neither lasted very long.
I went in and out of eating disordered behavior until I was 27 years old. I was too prideful to ask for any help. I had also given up and disregarded my being tired as playing a role because after all, the doctors had always given me a clean bill of health. Maybe I just needed to be stronger.
After graduating from college I went on and got a good job but I still felt debilitating fatigue. Bouts of heavy drinking and partying in college evolved into full blown drug and alcohol addiction during this period of time. I've always been a risk taker and have had the "rules don't apply to me attitude." I found that the perfect combination of meth and alcohol and I'd feel energized and happy. Rarely did I feel either of those things and certainly not both at once! By 27 I was homeless and on the streets. I knew I was better than a life of drugs, but clean I felt lifeless.
You'd have to understand how miserable the fatigue makes your life to comprehend why someone would go to such extreme and unhealthy lengths to feel some relief. My life looked good on paper but I could never fully engage. I wanted so badly to be a part of a life I knew was wonderful, but just couldn't. Drugs and alcohol seemed to be the answer, but only for a short time. No one can sustain that kind of abuse with any level of success over a period of time. Yet, with no answers or help from medical professionals, I was willing to do just about anything. Drugs and alcohol are often used as means to escape or "check out." That was NEVER the case for me. I was only trying to "check in."
Certainly there are countless people in the world that suffer from this kind of fatigue who don't develop eating disorders or abuse drugs and alcohol the way I did. I am however, 100% positive, that it would have never gotten so bad had I not felt like the walking dead as often as I did.
I remember around this time driving with my dad in his car down a nice strip of highway in Southern California right near the beach and him saying to me "It's a beautiful day out Brooke, don't you want to get out there, grab a coffee and walk with friends and enjoy yourself?" I'm sure my answer was something along the lines of, "yeah dad that would be great" but I remember to this day thinking in my head, "but dad you don't understand…I CAN'T."
At 27 I got help for drugs/alcohol and went on a crusade for answers. I started with an excellent psychiatrist who initially put me on anti-depressants. They didn't work at all. I was still so tired all of the time. After explaining my past with him, he thought that maybe depression was only a secondary problem, and that the fatigue was primary. But every doctor told me I was "fine." Irregardless, I yet again went in and had my hormones, thyroid, etc. checked. All came back normal. So my doctor put me on Provigil and I went off anti-depressants. Provigil is a non-addictive central nervous stimulant.
The Provigil worked at first, but my body quickly adjusted and I couldn't tell the difference between being on it or off it. I was so sad. It appeared to have helped, but only for a minute. I had read some great reviews from people who take it, but for me, it wasn't the answer I was looking for. I wasn't depressed at all I noticed. I never really had been. I had always simply been tired of being tired.
I then went on to a gynecologist who told me that the frequent urination and pain I had been experiencing for some time was due to interstitial cystitis. He put me on Elmiron. The Elmiron made me feel horrible so I stopped taking it and continued taking Provigil. I know, I shouldn't play doctor, but I am still strong willed as ever!
I later went to see another gynecologist because I was starting to excessively sweat during the night. My hormones had been tested by the previous doctor and everything came out "fine." She said it would be next to impossible for me to be pre-menopausal at 30 years old, and sent me out the door.
Over the past year (2009) I had been having recurrent sore throats, and white spots. My lymph node on the left side was constantly swollen (this was also I problem I had in college that I disregarded for the most part). It became so bad that in August of this year I underwent a tonsillectomy.
A month ago while researching causes for fatigue as you will often find me doing at night after my adorable 1 yr old daughter has gone to bed, I came across the name Dr. Teitelbaum. When I got to the home page I saw Dr. Oz, a name I have come to trust and to hold in high regard. I knew I had landed on something good.
I took the test Dr. Teitelbaum offers that in essence lets you diagnose yourself based on a questionnaire. I couldn't believe it when I went to work to print it out and around 50 pages came out. I wanted to cry. I felt like someone cared!
When I came across D-Ribose and the effects it has been having on CFS patients, I did further research of my own on the internet and I had to have it immediately. I went out and bought a good multi and the ribose the next day. I have tried everything for energy: caffeine, ginseng, ephedra, Provigil, methamphetamine, working out, sales jobs that get my adrenaline roaring, 9 hours of sleep (that never by the way leave me feeling refreshed in the morning), you name it... the good the bad the ugly, and I've tried it.
I have never in my life experienced such a dramatic effect on my energy levels, with no side effects, as the past month I have been taking the D-Ribose. I am nervous after so many years at failed attempts for energy that this is too good to be true and that somehow this will stop working. But for now, I want to give Dr. Teitelbaum a HUGE thank you from me, my daughter, and everyone in my life who loves me so much and wants so badly to see me enjoy this wonderful life I have to the fullest extent possible.
Just to know there is someone out there that understands that people like me are not imagining fatigue, and have taken the time to research and pass the info along to us, I am forever grateful.
This email by the way is a very watered down version of the past 12 years. It's far more intense than I just described. So as you can imagine, it's wonderful to feel so full of hope.
Thrilled — Feeling 85% better with treatment by Dr. Ali Garcia at the Las Vegas Fibromyalgia and Fatigue Center.
Thanks for the ongoing newsletters. The article on the swine flu vaccine answered many questions on my mind.
Ten years ago I had to self-diagnose myself as a CFIDS sufferer. It went in to remission, and came back with a vengeance over 3 years ago. At that time, Dr. T was my only source of information and confirmation. His book is my personal recovery bible. I continue using it as a reference for reassurance and information.
I live near Tahoe, where Dr. Peterson practices, but was unable to get in to his clinic. Then I found the Fibromylagia and Fatigue Center in Las Vegas. With treatment from the wonderful Dr. Alena Garcia at the clinic, and of course supplements and support from Dr. T, my health has improved dramatically. I went from barely having the energy to shower in the mornings to what I consider 85% wellness. That is something to celebrate!
The recent discovery at Peterson-Whittmore Research Center at University of Reno, NV linking the retro virus to CFIDS gives credibility to our claims of real illness. Hurray!! I thank God every day for the brave doctors that are willing to fight the system and save lives like mine!
Jane J
Dear Jane,
You're welcome!
Glad you are feeling better. That's what makes it so much fun working with people with CFS/FMS ;-)
Love and Blessings,
Dr. T
Using Clomiphene to treat low testosterone in men under 50 years old.
From your article "Can Testosterone Be Good For You:"
Treating Low Testosterone: "For men under 50, it is often best to simply stimulate your body's own production of testosterone using a low dose of a medication called clomiphene (a "Clomiphene Stimulation Test" will tell you if this will work for you)."
What is considered a "low dose" (25 mg, 50 mg, etc.) and does it vary by body weight?
Dear Jeff,
The usual dose is 10-25 mg of sustained release clomiphene in a capsule (made by a compounding pharmacy, e.g. ITC Pharmacy 888-349-5453) 3x week at bedtime based on what is optimal to keep the testosterone level adequate at over 500 and preferably over 700 (lower doses paradoxically often work better than higher dosing). Dose is not based on body weight. It is usually proceeded by a Clomiphene Stimulation Test to see if it works, and the dose is adjusted based on the dose needed to keep testosterone levels OK (preferably over 600). For the stimulation test, blood testing for free and total testosterone and estrogen is done as a baseline, and then repeated on day 7 after taking clomiphene 50 mg at bedtime for 7 days to see if the testosterone has increased to over 500.
I would work with a holistic physician familiar with bioidentical hormone replacement and better yet, if there is a location near you, a Fibromyalgia and Fatigue Center (FFC) physician could optimally guide you (if you don't also have problematic fatigue, simply make an appt for bioidentical hormone treatment). The FFC physicians have the protocols for clomiphene testing and treatment in their database, and I can also guide them if questions arise.
Dr. T
Comment posted on the Oprah website.
Dear Dr. T,
I thought you might like to see the comment I posted in response to Dr. Mehmet Oz's column in the September Oprah magazine. I'm so glad you mentioned it in your newsletter.
Thank you again not just for the specific help you've given me but also for the work you're doing with CFS in general.
Bola O
Dear Bola,
Thank you for your very wonderful post. These kind of posts very much help to move things forward.
As an update, Dr. Oz also flew me to New York for a 15 minute segment they taped recently for his TV show. It was on fatigue, and focused especially on CFS — a major leap forward for the Oprah community ;-) This was the first segment of the show — kind of like the headline of a newspaper! It will likely air in the next 3 weeks. (If I get a few days heads up from the producers, I'll aim to put the date of the show in a newsletter.)
Thanks again for your support. Things are moving forward for folks with CFS!
Dr. T
Diagnosing bowel problems — SIBO and lactose/fructose intolerance testing.
I read your article about spastic colon/SIBO testing in CFS patients, and I was hoping you could clarify the difference between testing for SIBO, fructose and lactose intolerance.
My 15 year old daughter has had chronic bloating/stomach pain most of her life. Although she is an athlete who rows, swims, and runs and has thin arms and legs, her waist/stomach measures over 36 inches! Since she was 12, she also has chronic neck/shoulder muscle pain. She had colic as an infant, and at 9 months old she had a bad case of rotovirus where she was almost hospitalized for dehydration. Even now, if the whole family gets the stomach flu, she always seems to get it the worst. A IGg4 blood test indicated she has intolerances to eggs, wheat, dairy and peanuts, but after 3 months on a strict elimination diet she is only marginally better. She does eat alot of fruit/fruit juices, so your mention of testing for fructose caught my eye.
I took her to a gasteroenterologist, who did a HBT on her for lactose only, which turned out fine, so she says it is a simple motility problem. But I know if must be more than that! Your article mentions different tests for SIBO and fructose, so just because her lactose HBT came out OK, is it possible fructose or SIBO could be a problem? How is that different from breath testing for lactose? Is it a different substance that she would ingest for fructose and/or SIBO than for lactose before doing a HBT? Will an antibiotic clear all this up? Would a stool test also be a good test to do?
Also, her gastro MD mentioned motility might be a problem for her, which you also mentioned in your article. How does your "energy revitalization system" help increase motility — does magnesium help? Her doctor suggested MiraLax, but I really don't want to put my child on drugs if I can help it.
Please respond at your earliest convenience. I am desperate because my teenage daughter has very low self esteem, between a large waist (boxy figure), chronic muscle pain, and bad acne. Please help — I don't know where else to turn.
Dear Michelle,
The test for lactose intolerance ONLY checks for lactose intolerance and would NOT tell if SIBO or fructose intolerance were present, or if overgrowth of unhealthy (vs. healthy) bowel bacteria are present.
The individual HBT breath tests for SIBO, as well as for fructose intolerance, would need to be done on separate days. See the instructions attached which I have written with more information on treatment for SIBO (including the magnesium in the vitamin powder).
Another option is to avoid all fructose (e.g., sodas, fruit, etc.) for a week to see if symptoms improve. For SIBO, optimizing thyroid function with prescription Thyroid is key to improving bowel motility — which is an important part of treating SIBO. In addition, a 10 day trial of the antibiotic Rifaximin (as discussed in the SIBO article) to see if symptoms improve would be another way to screen for SIBO and other bowel infections. Basically, if symptoms improve and stay improved for even a few weeks after the antibiotic, then more aggressive treatments to improve bowel motility and bacterial balance can offer long term benefits.
Miralax is fairly safe for constipation, but will not address the underlying problems.
I suspect all of the above issues are but a small part of the problem. I recommend she see a Fibromyalgia and Fatigue Center physician (raise your concerns with the doctor and they can call me to discuss the questions you raise as well) or even do the free online "Symptom Analysis" program to assess for likely causes of her symptoms and create a treatment program for her as this can help her overall condition.
Hope this is helpful.
Let me know how she does. What she has sounds very treatable, but she needs a more thorough overall evaluation by someone more familiar with these overall issues.
Love and Blessings,
Dr. T
What do you think of the Chinese herbal remedy my doctor recommended for my chest pain?
Dr. T,
Hello again. Lately my energy has been down and I get an ache on the left side of my chest wall. I had a consult with a Chinese doctor and he said I have a spleen deficiency and a kidney deficiency and prescribed herbs. Could the ache on the left side of my chest be my spleen? And have you had any other people report success with Chinese medicine. Thanks for any insight you may have.
Dear Mike,
Chinese medicine (TCM) including herbs and acupuncture seem to work best in CFS/FMS after the SHINE protocol discussed in my book From Fatigued to Fantastic! and website has been addressed — but it can help.
Be aware that when he says spleen, he likely does not mean the physical spleen (as western physicians would) but rather the line of energy running from head to toe through the spleen (called a meridian).
Once your physician has ruled out heart disease, the left side wall ache in fibro patients is chest wall muscle pain the vast majority of the time (which is simply a nuisance and not dangerous). If it hurts when you push on it (during the pain) and is over the rib area, this usually confirms that it is muscle pain (discussed further under chest pain in my book Pain Free 1-2-3).
Love and Blessings,
Dr. T
Other natural antivirals resulted in "incredible" improvement in this person's severe fatigue/CFS.
Dr. Teitelbaum,
I am coming up on 18 months since I began treatment following your protocol suggestions.
Since my last correspondence in November 2008, I had serious fatigue and brain fog, with concurrent high anxiety and low stress tolerance. Recent lab tests in March 2009 from the Fibromyalgia & Fatigue Center showed low cortisol and suggested a variety of infections. The same was true in lab tests back in March 2008.
The doctor suggested:
- increasing the cortisol from 5 mg to 20 mg
- taking antibiotics
In March 2009, I graduated up to 20 mg of cortisol and began to feel better.
I decided to hold off all treatment (in particular cortisol) during April and May 2009, while waiting to get an adrenal stress test. My father and I had recently consulted with CFS contacts at CDC and learned that they produced a study in summer 2007 linking adrenal fatigue with CFS.
During this period, I learned about oregano oil and monolaurin as antibacterial, anti fungal and antiviral. I was surprised to see these on your SHINE protocol treatment list (a excerpt of it follows).
|Monolaurin — 300 mg capsules. Take 9 capsules once a day on an empty stomach for 1 week, followed by 6 capsules once a day for 20 days. Take lysine 1,500 mg twice a day while on Monolaurin.
|Olive leaf — 500 mg, 2 capsules 3 times a day for 10 to 14 days for respiratory infections.
|Oregano oil (enteric coated) — 2 capsules on an empty stomach 3 times a day for 3 to 4 months, then 2 a day as needed for yeast overgrowth.
After reviewing the literature and discussion with other M.D's, in May 2009 I began taking oregano and other essential oils. Last week I added monolaurine and lysine.
The results are pretty incredible.
- Oregano oil / Essential oils / terpenes
- Monolaurin
- Lysine
- Adrenal fatigue
Dear Willard,
Given the clinical response, it seems that the infections and adrenal fatigue are major components of your illness. The lysine and monolaurin are antiviral and the oregano oil tends to suppress candida. These are but a few of many helpful natural anti-infectious compounds, but relative to many of the other treatments available help a relatively small percent of people, so we often start with other treatments first.
Monolaurin comes from lauric acid, a fatty acid found naturally in breast milk and certain vegetable oils. This fatty acid has been used as a germicidal agent for centuries, and basically melts the viruses protective coating. It is cheap and can be found in many health food stores and at the NEEDS website (a wonderful company carrying CFS & FMS products owned by 2 of my favorite people).
Lysine is an amino acid (protein) which decreases the level of another amino acid called arginine. Arginine is food for many herpes viruses, so the lysine starves them. This is why lysine is used for preventing herpes and cold sores, but may also starve other viruses. The problem is that arginine is critical for making growth hormone (low in CFS/FMS) and nitric oxide (imbalanced in CFS/FMS — see the work of Professor Martin Pall). So lysine can be a "double edged sword," and I use other antivirals instead.
Oregano oil sometimes also has a side effect of people getting reflux with the oil taste through the day. On the other hand, in some people in combination the effects can be dramatic as you have seen. I would recommend continuing these for the 20 days for the monolaurin, six months for the lysine and three months for the oregano oil.
In addition to the benefit you've received from these, it also offers useful diagnostic information. Both the lysine and monolaurin have antiviral properties, raising the possibility of there being a significant viral infection. The oregano oil effects suggest that candida is an issue. Your FFC physician can address both of these with additional treatments that can help.
If symptoms recur when the monolaurin is stopped, I have not heard of any toxicity from longer-term use, and it is considered safe long term — though usually used for 20 days.
The Adrenal Stress End product at my website can also help the adrenal glands to heal.
Dr. T
Treating persistent spastic colon with Alinia.
Dr. T,
I've had chronic diarrhea/IBS symptoms for about 5 months continuously. I completed six weeks of Diflucan and am presently completing six weeks of Nizoral. I also take grapefruit seed extract and Probiotic Pearls.
My doctor recommends adding bifidobacterium, caprylic acid, and Uva Ursi to my regimen and continuing the Nizoral, grapefruit seed extract, and probiotics.
Attached are my CDSA results. Do you see anything else that stands out? Do you have any other recommendations?
Thanks so much.
Dear John,
As it has lasted 5 months, worth adding probiotics, but also consider a trial of Alinia which will treat many bowel infections (directions below). Also see the article on SIBO on my website and avoid sweets and lactose/dairy for 10 days first to be sure it is not lactose/fructose intolerance. Also, stay off magnesium containing supplements (including the vitamin powder) for 3-5 days to make sure this is not the cause. If contributing, lower the dose of the powder to 1/2 scoop a day, and add time release magnesium (on our website from Jigsaw Health) 2-4 at bedtime (it does not cause magnesium induced diarrhea).
Alinia instructions:
Alinia (Rx, nitazoxanide) — 1gm 2 times a day for 10-14 days. This is longer than the standard recommendation for this medication and it is expensive, but it will be off patent soon. So there hopefully will be less expensive generics available soon.
Dr. T
Treating low amino acids in CFS.
Dear Dr. T,
After reading the study Amino Acids Low in Fibromyalgia, I am curious about what part of the digestive system is broken down. Could it be candida or damage to the small intestine? I'm going to take digestive enzymes with every protein meal and see if it helps.
Dear Brian,
We know that many amino acids are low in CFS/FMS, which is why we have 7,000 mg of amino acids in the Energy Revitalization System vitamin powder we use. The study authors' conclusions about amino acids being low are likely valid, but I suspect their guess about this coming from poor absorption is missing much of what occurs (poor absorption would cause all of the aminos to be low).
The gut is not "broken down" from the infections. Though there is poor absorbtion association with "leaky gut" from numerous bowel infections (which actually causes the aminos to be absorbed in long chains which then get eliminated by the immune system) and loss of nutrients because the gut infections may "eat" the aminos before your body can absorb them, there is also increased utilization for different functions and problems that occur in CFS/FMS (e.g., glutamine, glycine and cysteine are very low in post viral fatigue/CFS as these are used to make glutathione, which gets used up more quickly in chronic infections).
I find that people do better with amino acid supplementation, and this is why we have it in the powder. Beyond that, treating the infections and hormonal problems, as we do in the "SHINE Protocol" overall, is the approach I recommend to treat the low aminos. For example, Tyrosine makes thyroid and dopamine in addition to the catecholamines/adrenaline that they discuss.
Dr. T
Treating "Dysmorphic Disorder (BDD)," which causes severe over-focusing on what is perceived to be a physical defect. Could this be associated with OCD?
Dear Sir,
I live in Scotland and I attended one of Dr. Teitelbaum's presentations. It was fantastic!
I am asking for your help. Could you possibly send this email to Dr. Teitelbaum as I think he may be able to offer life saving help for my 26 year old brother. He has body dysmorphic disorder which is slowly robbing us of the young man we will not be able to live without. He is socially isolated now and he had such charisma and popularity before this mental illness struck him. I am his sister and I am looking into the mental health/thyroid link. He has low DHEA levels and he appears to have adrenal insufficiency, although physically he weight lifts (that is all he has in his life). However I understand that the chronic severe stress he faces daily could be compromising his adrenal glands. He is currently taking Armour thyroid, but I am worried that this may not be reaching his cells. It is possible he needs cortef too? Also been suggested that he needs vitamin B12. I really need some guidance. I do not exaggerate when I say this could literally save his life. We really need help soon. Please find it in your heart to forward this to Dr. Teitelbaum. He is truly a remarkable man.
Thank you for your time.
Best wishes,
Dear June,
BDD, with over focusing on what is perceived to be a physical defect, tends to be a cross between obsessive compulsive disorder (OCD) and depression. It is associated with low serotonin as is depression, so both OCD and depression treatments should be added.
Prozac family medications help in a portion of people with BDD and are reasonable to try. Adding thyroid that contains T3 (such as Cytomel or the Armour he is on) can be helpful in depression (and therefore possibly BDD) even with normal labs. Adrenal issues are less likely to be an issue (cortisol tends to be high in depression, not low) so a fasting morning cortisol should be checked and adrenal only treated if it is in the lower 1/2 or so of the normal range. On the other hand, fluctuating blood sugars can flare the BDD, so a low sugar diet is helpful.
If his DHEA-S is under 300 MCG/DL I would add DHEA and if his B12 is under 540, I would give B12 shots.
Looking at other depression treatments, fish oil (or your excellent Scottish salmon at least 4 ounces 3-4+ times a week) should be added. See Eliminate Depression — Naturally! for more. In addition, helpful treatments for OCD include:
|NAC (N Acetyl Cysteine) 600-2,000+ mg a day.
|The Energy Revitalization System vitamin powder has many helpful nutrients.
|Add 5-HTP 200 mg a night if on anti-depressants and 300-400 mg a night if not on antidepressants to raise serotonin (if pulse goes very high with anxiety or with fevers, the 5 HTP should be stopped till seen by a holistic MD or naturopath as it can raise serotonin too high, though this is rare).
|Consider GABA (gamma amino butyric acid) 1,000 mg at bedtime.
Give the above 6 weeks to start working.
In addition, he should see a holistic practitioner (preferably one who does NAET — visit www.NAET.com to see if there is one near you) to look for and treat food allergies. Doing an elimination diet first for 7-10 days to see if he improves is reasonable (improvement off the foods suggests food allergies — if not, allergies are less likely — add the nutrients above for 6 weeks first, then do a Multiple Food Elimination Diet. If the elimination diet does not help, food allergies are less likely. Also, Dr, Tom Gilhooly in Glasgow does excellent holistic care with a focus on essential fatty acids, so I recommend a consult with him.
Hope this is helpful. Your brother is lucky to have a loving and caring sister like you;-)
Dr. T
What could be causing my heart palpitations?
Hi Dr. T,
I have a few questions — I started taking the Adrenal Stress End again because I got another infection. Now I have heart palpitations at night and am shaking several times a day. I also started back on the DHEA and some tomidan. What could be causing the heart palpitations? How do you know how much adrenal stress to take? I'm still sick but better some.
Dear K,
It would be unusual for any of these to cause palpitations, though adrenal products can rarely cause palpitations as shakiness as they increase energy. The infections can often do it as well. In those under 45 years of age where the palpitations just feel like a "flip flop" it is rare for them to be dangerous, and these are very common in CFS/FMS, but best to have your doctor check to make sure there is not some other dangerous cause.
If the palpitations and shakiness persist after being off the supplements for more than a day, it is unlikely that the supplements are causing it, and they are more likely from the stress of the infection. If they stop when you stop the supplements, I would add each supplement back one at a time for 3 days to see if they recur. If they recur, stop that supplement. For the Adrenal Stress End, most find 1-2 caps in the AM is plenty, but some add 1 one at lunch.
As I noted, palpitations are common in CFS and can worsen with stress. If not associated with chest pain or dizziness during the palpitations, I have never seen them be dangerous in my CFS patients unless there was other underlying valve disease or angina, which is rare. The shakiness suggests low blood sugar, which is usually caused by low adrenal function, but taking adrenal support can rarely cause shakiness as well as it increases energy. I find that increasing magnesium intake (to a total of about 300-500 mg a day, or less if it causes uncomfortable diarrhea) tends to settle the shakiness and palpitations over time. The Energy Revitalization System powder has 200 mg of magnesium. I would add our new "Jigsaw brand" low release magnesium 2-3 tablets at bedtime as it does not cause diarrhea as some other magnesium products will. Each tablet contains 125 mg of magnesium and approximately 600 mg of malate
Dr. T
Feeling much better on Corvalen (ribose). Also, is the increased urination in CFS considered diabetes insipidus? Is whey helpful?
Dear Dr. T,
Your website is such a blessing for anyone with CFS. It is my best source of information.
My daughter is experiencing improvement on the Energy Revitalization System and the Corvalen. Would she also benefit from taking undenatured whey protein such as Immunocal, or is that too much? She started taking Immunocal and on the second or third day she got a headache and has been feeling headachy for the past two or three days.
We started with Cheryl [note: Cheryl Alberto is Dr. T's office educator who also has a private practice as a CFS/FMS educator. Cheryl can be contacted at firstname.lastname@example.com] and she will be getting back to us with a plan for more blood tests. I am pretty excited about the thought that hormones could be tweaked for possible improvement. I suspect that may be her best possibility for improvement. K may also have diabetes insipidus and she might be getting treatment for that. Dr. Paul Cheney has said in the past that about half of this patients show up with a mild diabetes insipidus. I did look for information on diabetes insipidus in Dr. Teitelbaum's work but he has almost nothing on the subject. I guess his perspective is different from Dr. Cheney on that. I can't get over how good Dr. T's question and answer newsletter is today.
Dear C,
Thanks. Good questions. And I am glad K is feeling better ;-)
I would leave off the Immunocal if it gave her a headache.
Dr Cheney and I may simply be using different words to describe the same process. I discuss a deficiency of anti-diuretic hormone which leaves people "drinking like a fish and peeing like a racehorse" and dehydrated. This is simply one of many hormonal deficiencies associated with hypothalamic pituitary dysfunction, and the treatment is adrenal support along with increasing salt and water intake, as well as treating autonomic dysfunction (all discussed in my book From Fatigued to Fantastic!) to optimize blood pressure. Diabetes Insipidus (DI) is simply a deficiency of this anti-diuretic hormone (i.e., anti-urination hormone). I reserve the term DI for much more severe deficiencies than those seen in CFS and also those which occur in isolation and not for what we usually see in CFS. In CFS the deficiency is much milder and CFS symptoms do not usually improve with taking anti-diuretic hormone (DDAVP) — which is curative in DI. So, same concepts, different languages ;-)
Dr. T
What brand of Probiotics do you recommend?
Dear Dr. T,
I am on a budget and need to know if the probiotic acidophilus that has been recommended by my doctor has to be Ultraflora brand by Enzymatic Therapy or can I purchase another less expensive brand? Would this brand be an acceptable: Enzymatic Therapy, Acidophilus Pearls, Digestive Health, 90 Pearls?
Thank you! I appreciate your guidance and support.
Dear Vickie,
The Enzymatic Therapy, Acidophilus Pearls, Digestive Health, 90 Pearls is excellent (and is actually the one I recommend and carry on my website). Any of the "pearls" would be OK, and the Enzymatic Therapy form is the best one. Without the pearl coating, over 99% of the probiotics are killed (and rendered useless) as they go through the stomach's acid.
Dr. T
Ribose is helping a lot, but does it cause weight gain or weight loss?
Dear Dr. T,
Hello, and thank you for such an informative website!
I have 2 quick questions about D-Ribose — which I am finding incredibly helpful so far — that I'm hoping you can answer.
|Does the average intake of 3 five-gram teaspoonfuls a day cause weight gain?
|I've read that some people can't metabolize D-Ribose. How does this manifest itself?
Thank you for your time!
Dear Anne,
You're very welcome, and thanks for your kind words ;-)
You are asking two good questions.
|Ribose is metabolized very differently than regular sugar and actually has a negative "glycemic index," meaning that it likely causes weight loss, not weight gain.
|The problem with ribose metabolism is that people with low energy production have trouble making enough ribose or holding on to it. Taking the ribose directly solves these 2 issues. In others, the problem is in making energy. Higher levels of ribose (i.e., the 2-3 scoops a day) help move the energy producing reaction forward. Because of this, taking ribose actually helps solve problems with ribose metabolism.
What we do see (present in 2 of 41 people in our ribose study), is that some people get over energized and hyper from the ribose. This then manifests as feeling hyper or as low blood sugar symptoms. These symptoms go away by simply taking the ribose with food or lowering the dose. It also, to me, has been a marker for when people need adrenal support (adrenal function maintains blood sugar levels — when symptoms of low blood sugar occur, this suggests the need for adrenal support). The ribose can then be especially helpful in the healing process — but these side effects are a sign that one also needs adrenal support. If so, I recommend trying the "Adrenal Stress End" product (available at health food stores or at our website). This can help improve energy and improve overall health in those with symptoms of low blood sugar. For more info on adrenal issues, see The Adrenal Gland.
It sounds like this is not a problem in your case, though. If you feel better on the Corvalen/ribose (and most do), it is working fine ;-)
Dr. T
Treating migraines during pregnancy (and in general)?
Patty asks:
Hi Dr. T! I was your patient for over 10 years and still continue to function as a special education teacher only with the help of the protocol.
My daughter has been suffering with fibro and migraine headaches for a few years as well. She has recently become pregnant with her second child and her migraines have gotten more severe and debilitating! What can she do for the migraine pain while carrying the child? She just left the ER after 6 hours having been given IV fluids (good!) and Benadryl. Is there anything else she could safely use to kick and/or prevent migraine?
Hi to all the staff and...
Blessings on your continued success with educating us all about Fibro and Fatigue!
Dear Patty,
In the emergency room, 1 gm of magnesium over 15 minutes will usually knock out a migraine and is also safe (and healthy) in pregnancy. Oral magnesium and vitamin B2 (riboflavin) can also prevent migraines, but take up to 6 weeks to see the full effect. I recommend the Energy Revitalization System vitamin powder and B complex (in health food stores and at our website) which is excellent overall, but also formulated to be excellent during pregnancy, and will supply good levels of these. See the info below on magnesium and migraines. Also take a moment to read my articles — A Comprehensive Medicine Approach to Migraines, and Top 10 Tips for a Healthy Pregnancy.
Dr. T
(The following is from my book Pain Free 1-2-3 on IV magnesium to treat migraines.)
In a hospital emergency room or a doctor's office, intravenous magnesium can effectively eliminate an acute migraine. In one study of 30 patients with moderate or severe migraine attacks, half received 1 g of magnesium sulfate IV over 15 minutes and the other half placebo. Those in the placebo group who were not better at a one half-hour were then treated with the magnesium. Immediately after treatment, at 30 minutes, and at 2 hours, 86% in the magnesium group were pain-free with the other 14% showing a reduction in pain. Associated symptoms such as nausea, light sensitivity, and irritability also resolved, and none of the patients in the magnesium group had a recurrence of pain within 24 hours. In the placebo group, no patient became pain free, and only one had a reduction in pain. When patients in the placebo group were later given the magnesium, responses were similar to subjects in the other magnesium treated group. Mild side effects, which are a normal effect of magnesium working to open blood vessels, such as a burning sensation in the face and neck, flushing, and a drop in blood pressure of 5-10 mm systolic occurred in 86% of the patients. None of these side effects was serious, and no patient had to discontinue the treatment. These results were similar to those in previous reports.
Chelation for CFS & Fibromyalgia? Is a high aluminum level significant?
BCK asks:
Dr. T,
Thanks for all the wonderful info on your site and your work in this area! Thanks for taking my question!
I'm a 38-year old male and have experienced significant, ongoing fatigue the last year or so. But the last few months have been much more significant.
I went to an internist and an endocrinologist. I have a family history of thyroid disease and the endo's tests and evaluation showed I don't have hypothyroidism yet. But I do have Hashimoto's due to an enlarged thyroid and "TPO" levels. However, he found that my testosterone was low, and that LH and FSH were low-normal, a likely contributor to the fatigue. So he ordered an MRI of the pituitary. That came back fine (thank goodness!) so he started testing and hormone replacement.
The internist ordered blood tests from Lab Corp of America on various things that might be causing the fatigue. The results showed Aluminum levels of 17 ug where 0-9 ug would be normal. He recommended 4 I.V. chelation treatments. I took one before realizing how controversial it is so I have stopped.
Are you familiar with whether this is a significant level of the metal that should be addressed? Or do you know who I could speak with/where I could go to get an expert opinion on the significance of the level of aluminum?
Thank you again.
Dear BCK,
The hormonal findings you are describing are normal for CFS and fibromyalgia because of the hypothalamic dysfunction. The testosterone replacement is a good idea (aim for a testosterone level of about 700-800 on replacement) and I suspect you also very much need thyroid replacement despite the "Normal" tests (see Lab Testing is NOT Reliable! and Thyroid Hormone Deficiency — An Overview).
On the other hand, that your doctor ordered chelation and looked for toxicity issues puts him ahead of most doctors.
Chelation is not controversial because of safety issues, but rather because of the politics surrounding holistic medicine, and I would be very comfortable using the chelation treatments as a patient (though I do not give them as a physician because medical boards irrationally like to take away the licenses of doctors who give it). It is controversial in the same way that it is controversial to give vitamins — not because it is unreasonable, but because it is holistic.
On the other hand, I am not convinced that you have aluminum toxicity and you should repeat the test at another lab after you make the changes below.
Aluminum (one of the most common elements in the soil) is toxic because it is oxidative (the opposite of antioxidants). I would be sure you are on a supplement high in antioxidants (like the Energy Revitalization System vitamin powder). The main sources of aluminum are:
|Antacids like Maalox or Mylanta — If ingredients note aluminum, switch to a different antacid without aluminum and see Eliminating Chronic Acid Reflux & Indigestion, my article on treating indigestion naturally.
|Underarm deodorants — switch to the aluminum free deodorant crystals in health food stores (they have aluminum which is OK). They work well and are like deodorant sticks (i.e., easy to use).
|Switch from aluminum cookware to stainless steel.
Sounds like overall hormonal support (discussed in my book From Fatigued to Fantastic!) is more what you need. Chelation is OK but simply may not be needed. On the other hand, many excellent doctors use it in CFS with good results, so it certainly is unlikely to do any harm.
Dr. T
More information on sensitivity to electric fields and computers.
After the earlier Q&A repeated below, some have asked where they can get more information on testing for electric field pollution and finding plug in filters to help this problem. A good place to begin is at Stetzer Electric.
Clint asks:
Dr. T,
I had a relapse with CFS and have been out of work for a year. I notice that this time around a few months into the illness, that I am now sensitive to sitting in front of a computer screen. Symptoms: get hot, nauseated; if stay on long enough, racing heart. I notice that I'm really sensitive to it in the morning versus the evening. Any ideas?
Dear Clint,
There are those who get electromagnetic sensitivity with CFS. I begin by adding the medication Neurontin, as this is often helpful. There are devices available that some find helpful for this problem, which are made by the Clarus Company. In some cases, turning off the electric circuit to your bedroom before you go to bed (use a wind up alarm clock or a battery one kept away from your head) and leaving the electricity off at night can help (you would be amazed at some of the electromagnetic fields found in the bedroom ) can also help — especially since you are worse in the morning.
In severe cases, there are specialists that can evaluate a home for electrical pollution and assist in remediation.
If the electrical sensitivity is associated with a heightened sensitivity to light, sound, taste, smell and/or Multiple Chemical Sensitivity (MCS), consider carbon monoxide poisoning. This is being researched by Albert Donnay, who feels it is a very treatable case of CFS when MCS and environmental sensitivities are present. See Multiple Chemical Sensitivity for more information on MCS and Donnay's work.
Dr. T
Lipid replacement therapy for treating CFS patients.
Daniel asks:
Hello Dr. T,
I would love to hear your medical opinion on what is known as LRT or "lipid replacement therapy" and it`s relevance for treating CFS patients.
I Thank you in advance.
Dear Daniel,
Most of this work is by Dr. Pat Kane and her husband and is geared to improving cell membrane health with IV Phospholipids. It is helpful but pricey. I would start with Dr. Nicolson's NK factor first to see if it works.
Dr. T
Treating food allergies with NAET (a special form of acupressure).
John asks:
Dr. Teitelbaum, I have had several NAET treatments for different food allergies with success. My biggest problem is with milk, which I have been treated for and cleared. I am still having problems with milk and have gone for a second opinion with another NAET practitioner who also agrees I cleared the milk and does not know why I am still having problems with this. I did have a week tolerating milk with no problems when having milk or milk products. Do you know why I would be able to tolerate milk then not be able to?
Dear John,
NAET is often very effective at eliminating food allergies. However, the allergy may need to be cleared on an emotional level as well as a physical level for the treatment to hold. In addition, it may be a digestion vs. allergy problem with the casein milk protein being incompletely digested into biologically active fragments, so try adding a plant based digestive enzyme (e.g., CompleteGest, available most health food stores) plus lactase (in most supermarkets in the artificial sweetener section) when using milk products (or use fermented yogurts) to see if this helps.
Dr. T
Tolerance to the sleep medication Xyrem?
Dr. T,
What is your protocol for dealing with tolerance to Xyrem? I have been on Xyrem for about 3 or 4 years for FMS and CFS, but am finding that I am only getting 2.5 hours of sleep per dose when I used to get 4. Sometimes I don't sleep at all with it. I am taking 4.5 g 2x/night.
On my own, for the past week, I have added an Ambien CR before bed and decreased each of my two Xyrem doses by 1.5 grams each night. Now, my thought is if I stop the Ambien CR and start titrating back up to the full Xyrem dose, it will work like it used to.
Make sense?
Dear John,
Tolerance to Xyrem is uncommon, but can occur with any treatment. In my practice, I will add meds to the Xyrem as needed, and even rotate treatments to restore effectiveness. It is reasonable for your doctor to do as you did, or even to taper off the Xyrem a few weeks and then retry.
Could be something else is adding a stress which is worsening your sleep instead of it being Xyrem tolerance. Optimize nutrition, and eliminate infections and other stresses as well. Then I would usually adjust sleep meds in my patients on Xyrem as needed to keep sleep optimized.
Dr. T
High ammonia levels in CFS (common and can cause brain fog).
A CFS specialist asks:
Dear Dr. T,
When is an ammonia level too high? Quest has a <47 umol/l range.
For an ammonia of 63 umol/l in a 27 year-old female, what is the recommended lactulose dose, frequency and duration of treatment and how often do you repeat testing for serum ammonia to monitor?
Any other protocols or the next layer of testing to discover why it is high?
Dear Werner,
This is a surprisingly common problem that is worth looking for in a CFS/fibromyalgia population. The cause of the elevated ammonia in some CFS patients is not clearly defined, but I suspect it relates to gut bacterial overgrowth and the bowel being alkaline. This relates to the SIBO (Small Intestinal bacterial Overgrowth) common in this illness. Ammonia is produced in the gastrointestinal tract by bacterial degradation of amines, amino acids, purines, and urea.
Lactulose use:
The medication lactulose can lower the ammonia level. Lactulose appears to inhibit intestinal ammonia production by a number of mechanisms. The conversion of Lactulose to lactic acid results in acidification of the gut lumen. This favors conversion of NH4 + to NH3 and the passage of NH3 from tissues into the lumen. Gut acidification inhibits ammonia producing E. coli bacteria, leading to increased levels of non-ammonia producing lactobacilli. Lactulose also works as a laxative, in essence washing out the "excess" bacteria.
Proper liver (and muscle) function is important to ammonia metabolism as well.
Initial lactulose dosing is 30 mL (1 ounce) orally once or twice daily as needed to have 2 loose but not diarrheal stools each day. If the ammonia is not adequately lowered after 3-4 weeks on this, the dose may be increased, but I would then consider a 10 day course of neomycin 250-500 mg TID (a non absorbable oral antibiotic made by compounding pharmacists — like a cheaper Rifaximin). Patients should be instructed to reduce lactulose dosing in the event of diarrhea, abdominal cramping, or bloating.
Love and blessings,
Dr. T
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