text:
11/20/2015: Update: Just a very quick update for now. I still haven't been able to get the Nystatin. Here's a letter from my medicaid doctor explaining why I need the sugar-free version:
This fungal infection is very serious, and may be one of the reasons my digestion has remained so poor and why my muscle loss continues to be a problem. The nystatin is also helpful for mold-related issues (which I tested positive for last year but wasn't able to tolerate the treatment at that time). If you could help cover the cost of this with a donation, using the Paypal donation button (no account required) I would be most grateful.
Wishing you all the best during the coming Thanksgiving holiday week. 🙂
September 8, 2015
Thank you for taking time out of your day to stop by. I'm having a rough time, but have noticed some stabilization due to the injectable thiamine we were able to purchase 2-3 weeks ago thanks to the generosity of friends and family. I'm hanging in there and still believe with your help we can turn this around and end the year on an 'up' note.
How you can help
A couple months ago my new medicaid doctor prescribed the antifungal Nystatin to treat the thrush in my mouth. This fungal infection may extend to my sinuses and gut as well, and treating it may help improve both the long-standing sinus issues and hopefully my gastroparesis and as well. Research has shown a connection between ME/CFS and gastroparesis, and also a link to many different types of infections.
The problem is the only form of nystatin that medicaid would cover is one that was so sugary-sweet that it was very, very hard on my teeth, especially since it must be held in the mouth for at least 10 seconds.
The doctor then prescribed a safer sugar-free version, but unfortunately, medicaid would not cover it, so I was unable to get the prescription filled.
The cost of the compounded Nystatin is $85.00 plus shipping.
I also need more Digestive Enzymes and Betaine HCL to help with digestion. The enzymes are $39.74 and the Betaine HCL is $28.00. Thankfully I'm able to get by with using less of each, so perhaps that suggests an improvement as well.
Donations to the "Daniel J. Becks Special Needs Trust" by clicking on the PayPal "Donate" button on the upper right hand side of this page. They can also be made at any Bank of America branch (please bring the precise name of the account and the account number — 35137298).
Please note that you don't need a PayPal account to make a donation — they safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
As always, thank you for taking time out of your busy day to read this update.
May 14th, 2015
Hello friends,
A long overdue update…
I was able to stabilize a little bit by late January, due to the thiamine injections (thank you!) and a modest change in my diet. The dietary changes are taking a lot longer than I'd like — I'm still not getting nearly enough calories due to the frustrating gastroparesis and the problem with digesting fats — but I'll be seeing my medicaid doc in a couple weeks and can explain more about that in my next update.
I've also spent the last few months trying to figure out why 2014 was such a hellish year. Again, it may have something to do with environmental irritants in and around my apartment, but after reviewing notes, diaries and receipts from 2010-2014 I believe I've discovered a distinct overall pattern which may offer another reason behind the hellish downturns.
But that will have to wait until next time.
Right now I urgently need to order a refill of the injectable thiamine, as I've been starting to slide backwards over the last couple of weeks, and unfortunately, the much cheaper thiamine supplements just do not seem to make a difference. (Thankfully the sublingual B12 seems to work as well as B12 injections.)
Thiamine deficiency is very serious. If you take a look at the list of symptoms on this page, I have practically every one of them, and they diminish with the injections. Thiamine should also help with my digestion, as it's needed for hydrochloric acid secretion.
Your help is needed…
A refill of the B1 injections cost $150.35 (including shipping) for 8 vials, which is supposed to last about a month, but I can stretch them out and make them last for 2 months.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the upper right hand side of this page.
**Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
Thank you for taking time out of your busy day to read this update.
December 19, 2014
Okay, now I'm really mad and upset. At myself. I'll explain in a second…
But first, the allergy update:
The delayed food allergy test came back with very perplexing results: It showed I was only allergic to a couple of foods that I hadn't eaten in years. In fact, one of my worst allergies is bananas – something I haven't eaten in probably 40 years. I am also allergic to cranberries, baker's and brewer's yeast, also foods I haven't eaten in years.
Yet my eyes and sinuses continue to get worse, so there's either something here in my apartment that's making me very ill, or it could be due to infections or some other factor or factors. The yeast reactions could indicate a fungal infection, or other molds. And the doctor pointed out these tests don't show if one has a food intolerance, like salicylates, so that could still be a problem. Just the fact that I'm not getting enough calories due to long-standing digestion problems (mainly fats) could be causing these problems as well.
So why am I upset?
Because I should have asked for help months ago, soon after my last appointment.
So why didn't I? Well, it's always been so very, very difficult for me to ask for help, and very stressful and draining, especially so during these last really rocky six-seven months.
But the main problem is this — being chronically ill for years has definitely affected my self-worth, which was never great in the first place. And after a few years in a downward spiral, that self-worth has gone downhill even further.
BUT I AM WORTH IT. And I'd probably be doing better right now if I hadn't waited so long to update the blog.
I believe a turnaround is still possible and is in the cards with your assistance.
One of the things the doctor recommended was methylcobalamin (B12) injections, 3 to 7 times a week. In the last month or so the neuropathy has increased in my feet again, and if I had asked for help, there's a good chance this wouldn't be happening.
I'm also running out of injectable thiamine (which I hadn't taken very often, as again, I was afraid to ask for help). A refill of the B1 injections cost $148 for 8 vials, and B12 injections cost $160. I also need more betaine HCL to help my digestion, a month's supply costs approximately $70.
Your help is needed and appreciated…
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the upper right hand side of this page.
**Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
p.s. I am fortunate to have the prospect of some professional fund raising help in the New Year, and would welcome any suggestions or ideas you might have. I feel a change for the better is around the corner!
November 8th, 2014
I've been meaning to update the blog for several weeks, but have been having some really rocky days, despite changing my diet several times, based on the allergy test results. I've been in touch with two different allergy specialists who are both equally confounded.
However, just during the past 4-5 days I think a couple things are finally, finally starting to change, and for the better. Of course I certainly hope this is a definite trend, but should probably wait another 5 days or so before I can say so with some confidence. I will definitely update with more details as soon as possible.
In the meantime, I hope you are all doing well, and as always I am so grateful for your continuing support and understanding.
September 18th, 2014
Wow, 2 months since my last update. Time flies way too fast…
Slight sidetrack…
I saw my Medicaid doc last month to ask about testing for h. pylori, but that got pushed aside as my blood pressure was quite high (178/90). My BP had been slowly increasing over the last 2-3 years, but had gone down in 2013 w/medication, and later a combo of fish oil/vitamin E and magnesium (approved by the doc). In fact the latter worked so well, she took me off the medication last November. I had backed off the supplements earlier this year (oops!), but am back on the med, and the fish oil combo.
I recently learned this fluctuating blood pressure problem can be part of ME/CFS, called dysautonomia. Interestingly, one of the other symptoms is 'delayed gastric emptying'.
Ten days later I saw the ME/CFS doctor, and again was ready to ask about h. pylori, but a few days before the appointment my nephew offered to pay for a 'Delayed Food Allergy' panel. Both he, his wife, and his father have found it to be surprisingly helpful for resolving various health issues, including severe digestive problems that his father was experiencing that sounded somewhat similar to mine.
It's also a test the clinic regularly offers – in fact when I called about it – they were surprised I hadn't had it done years ago, because it's been helpful for other patients with chronic illness. It's different from common (immediate) food allergies (to peanuts for example) – it actually represents a delayed immune response to over 96 foods.
Since I've been eating a very limited diet for years – eating the same foods nearly every day for 8-10 years — there's a likelihood I've developed antibodies to the foods I'm eating, so that might explain why I don't seem to be able to absorb or utilize much of what I eat. Besides putting a strain on my immune system, my body may be trying to protect myself by outright rejecting them. The only limitation of the test is that it doesn't reflect food intolerances like those to salicylates or oxalates, but still, it should be helpful.
The doctor is on vacation this week, but I have a follow-up scheduled for the last week of September to discuss the results.
As always, your help is so very much appreciated and essential to continue to help piece this puzzle together. We've learned something with each test* and despite some setbacks in some areas I can say with confidence that I'm doing a little better in others.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the upper right hand side of this page.
**Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
*Please know that we will treat for the mycotoxins as soon as physically possible.
July 20th, 2014
I've been delayed as I had two visits last week, both very much welcomed, but I had to reserve all my 'energy' in preparation for each visit, and then "crashed" quite severely afterwards.
I definitely have had some improvements in some areas (sinuses and eyes are a little better), but now this last week has been quite a rollercoaster again, mainly severe cramping in my left foot that has kept me from sleeping. Doesn't happen every night, but is quite disabling and frustrating. Which leads me to…
The Elephant in the Room
The weight loss, muscle loss, the cramping, the poor circulation, vitamin deficiencies, krebs cycle problems, and so many of the other symptoms — have to be a result of my poor, poor digestion. Or at the very least, this poor digestion has to be 'fixed' before I can see some real, sustained improvement.
I have no appetite, and haven't for years. My stomach hasn't "growled" in probably 15 years. I have to force myself to eat, and take hydrochloric acid supplements and digestive enzymes, and STILL, my food just sits there in my stomach for hours. I also can't tolerate most fats, so there is no way I'm getting anywhere near enough calories each day.
And after all these years, I may have found an explanation for this odd lack of stomach acid, or as it's called, 'achlorhydria'. Ironically, it may be due to the same bacterial infection that causes ulcers — helicobacter pylori. I had never heard of this connection, but a fellow patient (who had also lost a lot of weight) mentioned the possibility, and sure enough, h. pylori can cause achlorhydria.
This 1997 study concluded that "In some subjects, chronic H. pylori infection produces a body-predominant gastritis and profound suppression of gastric acid secretion that is partially reversible with eradication therapy."
"Partially reversible" is a little worrisome, but keep in mind this study was done 17 years ago and a lot has been learned, treatment-wise, since then. And I'm encouraged by the fact that the patient I spoke with who treated her h. pylori gained 26 pounds of lost weight in 5 months.
I don't know yet if this is causing my low stomach acid (there could be other infections as well), but for the first time in 16 years, this is the first explanation that fits with some other test results that I have in my overstuffed file cabinet.
I need to get back to the doctors to test for this, and if positive, discuss treatment options (there are both pharmaceutical and holistic treatments) — but need your help to get me there — the Trust account has dropped to $39 since the last fundraiser.
As I don't have health insurance and only a bare subsistence income, the doctor's fees have to be paid from the Trust. The Trust needs to raise $130 to pay for a followup appointment, plus additional fees for tests and treatments, which of course vary in price. (Hopefully one of the tests may be covered by Medicaid.) I am so very, very grateful for your support and hope to hear from you soon.
July 12, 2014
Just a quick note to let you know I've been experiencing severe sinus congestion over the past six weeks, which affected my eyesight, ruined my already poor sleep — and surprisingly, made my digestion even worse, but I've had two phone consults with the doctor and some of the symptoms have improved over the last 10 days or so. But for several weeks I could hardly be on the computer for more than 10-15 minutes without my eyes just giving out from dryness and fatigue.
I will make every effort to post another update in the next few days with some good news regarding some other improvements, and details on what the doctor thinks needs to be addressed before proceeding further with the antifungal/mycotoxin protocol. It's been the elephant in the room for too many years, but has to be corrected as much as possible in order for my body to heal and rebuild itself.
Thank you again for your continued support. With your help, I hope to get back to see the doctor early next month.
May 29, 2014
I am more confident than ever that I can and will recover.
How in the world can I say that after being sick for so long?
How can I even say "Recovery Is Possible", especially after my health has worsened so much during the past three years that I now need to use a wheelchair 80% of the time?
Because of test results like the one I got back last week. The results were surprising and scary, but in an odd way, they were also encouraging and validating.
The Mold Toxin Test Results
The lab tested for three different 'families' of mold toxins. While my results for Ochratoxin A and Aflatoxins came back negative, the macrocyclic trichothecenes came back elevated at 300% higher than they should be.
This was surprising, because the first two types of molds come from food. I thought these would come back positive, since my digestion is so poor and have lost so much muscle.
The macrocyclic trichothecenes come from exposure to Stachybotrys chartarum, the toxic "black mold" that grows in water-damaged buildings, like the apartment complex I used to manage when I got sick so long ago.
This is scary, because trichothecenes are considered extremely dangerous and more difficult to eliminate from the body. They strongly inhibit protein synthesis, which may explain why I've lost so much muscle and become so weak. They also create high levels of oxidative stress that are especially damaging to the mitochondria (the energy 'factories' in every cell in the body).
The results are also encouraging and validating, because they are similar to those found in the Brewer Study, where the vast majority of his patients also had not been exposed to a water damaged building in years, sometimes decades, but still had elevated levels of these mold toxins in their sinuses and urine.
Beginning treatment…
Because my health is so fragile, the doctor wants to start me out with gentler prescribed herbal extracts that will help prepare the body to process and remove the mycotoxins that will be released when the stronger antifungal and anti-biofilm drugs are started. (There have been several reports of significantly negative reactions from other patients.)
So, while it's very frustrating that it's taken almost 16 years to find out that I've had these toxins inside me all along, I'm so very grateful to Dr. Brewer and the other researchers, and I'm confident that over time, I can clear these mold poisons from my sinuses (and my body), and stop this vicious cycle.
As with any serious illness, my doctor said it's essential that I come in every 4-6 weeks in order to turn this around, (and this was confirmed in a discussion I had 2 weeks ago with a former mold patient who has since become a doctor).
I am really excited to finally have a diagnosis that offers real promise, a promise of finally acheiving better health. But I am also more than a little frightened that I may so close to recovery but unable to grasp it for lack of money to pay for the doctor appointments and medications.
I am so very grateful for all the assistance I have received from so many kind and generous friends and relatives over the years of my struggles with this debilitating sickness. Now that I have real hope at last, I sincerely hope I can count on receiving that additional financial support so necessary to restore my health.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the upper right hand side of this page.
**Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
May 23, 2014
Another quick update to let you know I did get the urine mycotoxin test results back, and sure enough, it came back positive for mold poisoning — probably from the exposures I had while working as an apartment manager from 1994-2002. So this is kind of scary, but also in an odd way, "good" news, as it could explain a large part of why I've been so ill for so long and point the way towards recovery.
I will write in more detail within the next few days, but for the last couple of days I've been saving every ounce of "energy" I barely have for a visit with family, especially my nephew and his extended family, some of whom are in town from Peru. Haven't seen them in seven years…
I'll update this as soon as possible. In the meantime, thank you SO MUCH for helping me get this testing. Hopefully it's the 'game-changer' we've been looking for for so long.
May 9th, 2014
Just a quick update to let you know I have an appointment on May 20th with my ME/CFS doctor to go over the results of the urine mycotoxin panel, and also to discuss the muscle twitching and cramping as shown in the video clip in the last update. It's been a little bit better at times during the past few days, but still definitely a problem. Plus, as noted below, I'll be seeing my new medicaid doc this coming Tuesday, and will of course bring it up with him as well.
April 27, 2014
GOOD NEWS…and…not so good news…
Thanks to the generous donations from friends and relatives, I was able to raise enough funds to order the Mycotoxin Test as described in the last post. It took longer than expected to get the test kit delivered, but I was finally able to send it off to the lab a few days ago and should expect results in 7-10 business days. So I'll be setting up an appointment with my doc to go over the results and treatment options as soon as possible.
Again THANK YOU SO MUCH for your help with this!
The Not So Good News…
Around the first week of April, I started developing increasingly worsening fasciculations in my legs and feet. I've had these off and on before, but this time it's been pretty bad, quite scary actually. This video is unfortunately a little out of focus, but shows how bad it was on April 11th:
It's been a little better at times, but still quite bad overall. Not sure what's causing this…vitamin d deficiency and a related calcium deficiency, or possibly a long-standing B12 deficiency…or a long-standing result of poor mitochondrial function, mycotoxin issues? I have an appointment w/my new medicaid doc to check for "d" and "b12" levels on May 13th, the earliest I could get in.
The worst previous bout of this was back in 2002 — it lasted for almost the entire year. I tried calcium/magnesium, and dozens of other adjustments to my diet, but the thing that finally stopped it was methyl-b12 injections, which I took for about six months. I had a difficult time with methyl-b12 in 2011, at least initially, but I was taking it along with quite a few other methylation and cal/mag supplements, plus eating a high-salicylate diet, so perhaps the combination was the problem, and not the b12?
Later in August 2011, I got in touch with the doctor who prescribed the B12 injections back in 2002, and was able to tolerate the shots somewhat better, along with nebulized glutathione.
That was almost three years ago…perhaps I'm way overdue for more? I hope it's as "simple" as that, as this is really torture. Believe me, it's very, very difficult to calm down and relax when one's muscles are twitching constantly, or to sleep when one bolts out of bed with a severe leg cramp.
Thanks so much for taking time out of your day to read this update. I'll update with hopefully some news of improvements as soon as possible…
March 30, 2014
Been feeling quite hopeless lately, but am really buoyed by a new study that was discussed at a major ME/CFS Conference late last week. The more details I hear about it, the more excited I am…it's been a real eye-opener.
About a year ago Dr. Joseph Brewer M.D. published a study that found over 93% of his patients had some sort of mold or fungal-related toxins in their urine. And what was really interesting was that many of these patients hadn't been exposed to mold (in water damaged buildings) in many years, sometimes decades.
So if they hadn't been exposed in years, his new study looked at where the stuff could be hiding — and found it in the patient's sinuses, but not, as noted in the study, 'in nasal washings of a healthy control population'. In a related paper referenced in Brewer's study, use of the antifungal nasal spray amphotericin B resulted in 91% of patients experiencing a "dramatic decrease in their systemic symptoms".
While not everyone is reportedly tolerating the drug protocol, there are others, some described to me by a patient of Brewer just yesterday, who are now 'either completely well or nearly completely well'. This had never happened before, according to the patient, who has known Dr. Brewer for more than 15 years.
There are four reasons this study makes so much sense and gives me so much hope:
1. Hidden amongst my severely disabling symptoms is an unusually tough, stubborn 15-year sinus infection, that antibiotics have never been able to touch. Could this be because it's really a mycotoxin-related infection? And could this infection be behind my sixteen-year long illness?
2. Although my last apartment had been tested for mold and came back clean, I certainly had at least a dozen brief exposures (averaging several days or more) to water-damaged units while working as an apartment manager back in the mid-to late 1990's, which is precisely when I first got sick.
3. Also, as noted in this new study, some of these mycotoxins (called ochratoxins) are found in very specific foods – many of which I'd been eating on a daily basis, especially from about 2009 to mid 2013. Could this explain why my body's been basically rejecting the food I eat, resulting not only in the severe muscle loss, but also the overall worsening I've experienced during this exact same time period?
4. As noted on page 7 of Brewer's original study, mycotoxins cause mitochondrial (cellular energy) dysfunction and damage — something I've been trying to 'fix', with no success.
Could a long-standing nasal mycotoxin infection be the thing that's preventing me from restoring my mitochondrial function and energy?
While I'm 99% sure that this is the case, I think it's prudent that before any money is spent on potentially costly drug treatments, that I first get tested to confirm that I have these mold or fungal mycotoxins.
The cost of the RealTime Lab Total Urine Mycotoxin Panel is $699, plus $130 for the doctor appointment. As this test is not covered by Medicaid (or even Medicare), your help would be sincerely appreciated so that I can be in a position to have this testing done as soon as possible.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the upper right hand side of this page.
**Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
When you click on the PayPal "Donate" button, you'll be transferred to the Daniel J. Becks Special Needs Trust's secure PayPal Page. If you don't have a PayPal account, just click on the "continue" button on the lower left hand side and you'll be able to donate using your credit or debit card.
As always, I am so very, very grateful for your help!
Thank you for taking the time out of your busy day to read this update.
February 8th, 2014
Once again, I can't believe more than a month has gone by since my last update. You know the saying, "Time flies when you're having fun"? Well, I hate to say it, but it flies even faster when you're not.
As always, I'm so very grateful for the donations that came in back in November — they have helped to pay for the expensive digestive supplements (which on average cost about $160/month) along with other supportive supplements — including the prescribed thyroid and thiamine injections. I am also trying some additional support for the Kreb's Cycle, especially a niacin-related co-enzyme called NADH (recommended by Dr. Sarah Myhill, see below), to help improve mitochondrial function.
I need to get back to the doctor, but have to go through the annual 're-certification' process here at the low-income apartment building I live at. That is currently sucking up any 'energy' I may have, and of course can't wait to get it resolved.
Unfortunately, not much has changed since my last update. Still have neuropathy and MS-like muscle twitching in my legs and especially my feet, that comes and goes, but has been pretty constant for the last several months.
There is one issue that I've talked about before, but bears repeating: Patients with ME/CFS tend to have low blood volume and reduced red blood cell (RBC) mass, compared to healthy controls. This is usually addressed by adding extra sodium and other electrolytes to water…but does it help increase 'red blood cell mass'? Does it really address a possible cause of the problem?
I've always felt I'm about a quart low, and lately feel like I'm about a gallon low. For the last 3-4 years my feet have always been very pale, while my hands/fingertips are nice and pink:
Why is this? What could possibly explain this, not to mention possibly explain my muscle loss, my poor digestion, etc?
I've been pondering this off and on for the last six weeks or so, and am wondering if it may be caused by an undiagnosed parasite infection? Yes, I've had multiple stool tests over the years for parasites and ova (which have come back positive on two out of five tests since 2002), but these tests will only find parasites if they're in the gut during a specific period of their life-cycle. Some estimate that parasites are missed 90% of the time. And what about parasites in the liver, or gallbladder, the sinuses…or other areas?
Dr. Simon Yu M.D. has found that a vast majority of his chronically ill patients indeed have an underlying parasite infection, and by using 'aggressive' treatment, their other symptoms and illnesses, start to resolve. Some resolve completely.
When I my parasite tests came back positive, they were treated for a week or less…
So I wonder again…is it possible that they were never sufficiently addressed, and have been literally sucking the life out of me?
I can see the light…can you?
Despite many ups and downs, I'm confident that with your help I can kick this complex, complicated disease to the curb in 2014…perhaps not completely, but we will make some definite progress.
I'm overdue once again in updating the blog…the time seems to fly by extra fast when one is ill, but I wanted to stop by before the year ends to thank everyone for helping to make the last Matching Fund Drive a success, and to wish you all the best possible year in 2014.
During the last month or so I've been dealing with a myriad of frustrating and disturbing symptoms — MS-like muscle twitches and neuropathy that comes and goes, that bizarre left-legged "restless leg" symptom that keeps me awake most of the night that is better, but still pops up at least once a week or so, and the continual digestive problems. Also my sleep overall has been worse during the past six weeks or so.
I've been going over lab tests from this year and prior years where we weren't able to follow up with particular treatments, and after reading and re-reading them — and consulting with others — I think I can see where we may have missed various pieces of the puzzle.
Some of these we've talked about below — mitochondrial support, methylation issues, digestion problems — all very important. But there are other things that have never really been adequately addressed, like chronic bacterial, viral or fungal infections — not to mention long overdue dental work — that are no doubt stressing my immune system and perhaps hindering the three issues mentioned above. In hindsight I should have paid more attention to them, but it all became so overwhelming and I guess got lost in the shuffle. Doesn't make any sense stressing about the past, all I can do is move forward.
With your continued support, I am confident we can address these things, one at a time (or maybe two at a time?) and make some decent headway in the coming year.
I hope to see the doctor again in the near future and will be sure to let you know how things are going.
My Best Wishes to You for a Healthier and Happier New Year!
11/16/2013 Update:
Just in time for my birthday…I'm very pleased and extremely grateful to announce a $400 Matching Fund Drive so we can continue to build on the progress made since July…
Thanks to your generosity, I was able to see my doc for the first time in 2 years, and also return for two follow-ups.
Thanks to your help, I've noticed the following improvements:
There are days when my feet don't have the 'burning pain' as often as they did…so there are times when I can walk a little farther, and stand a little longer. (This did worsen during the past 2 weeks, but just today I realized I haven't been taking the folinic acid as often as I was supposed to, plus I'm out of the methyl-B12, which seemed to be helping, along with the folinic.)
I don't feel as hopeless as I did back in July.
I can turn around in bed without experiencing shortness of breath.
And that very odd tightness and 'restless leg' in my left leg has diminished to the point that I experience it maybe once a week now, compared to 4-5 times a week back in July.
Unfortunately, my appetite and digestion is still poor, and although I've gained a little flub around my middle, I'm still losing muscle, and have a lot of difficulty with increasing fat in my diet…so I'm not getting enough calories, etc.. We're still trying to decipher this issue, and may need to consult a specialist in order to figure it out.
But unless I win the lottery tomorrow, I cannot get back to my doctor, or any specialist without your help. As noted in July, seeing a doctor once or twice a year has not worked…I really need to get in much more often, and also be able to be referred to other docs if necessary.
That's why I'm again so very pleased and extremely grateful to announce…
For the next two weeks, your donation will be matched, dollar for dollar, up to an generous total of $400, by a dear friend (who wishes to remain anonymous).
Therefore, every $1 donated will provide $2 in benefits. Please don't let this incredible opportunity to double your donation get away!
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the main page of this blog.
Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
When you click on the PayPal "Donate" button, you'll be transferred to the Daniel J. Becks Special Needs Trust's secure PayPal Page. If you don't have a PayPal account, just click on the "continue" button on the lower left hand side and you'll be able to donate using your credit or debit card.
Please help so that I can proceed to work on these serious issues by making a donation today! Every $1 donated buys $2 worth of benefits!
I am so very, very grateful for your help!
Thank you for taking the time to read this update.
November 11, 2013
I've mentioned the Krebs' Cycle (or 'energy' cycle) and mitochondrial problems several times in the last few months, even the last few years, but it's only in the last few weeks that I'm understanding how critical their proper function is to recovering from ME/CFS.
The Krebs' cycle takes place in the mitochondria, which through a series of many steps, supplies energy to every cell in the body. My NutrEval test results showed mine was not functioning well at all. I think I finally understand why.
If the mitochondria (and the krebs' cycle) aren't being 'fed' with the essential ingredients they require to function, or if they've been damaged or inhibited by a variety of stressors, then, the end result will be severe energy depletion. This ends up affecting digestion, brain, liver and gut function, the heart, which leads to circulation problems to the muscles, skin, joints…basically everything is affected.
Three years ago, it was thought that these mitochondrial problems were due to a 'partial methylation block', as noted below, but Dr. Ben Lynch (who my doctor is aware of) and others (like Dr. Sarah Myhill of the UK) have suggested that the mitochondria need to be supported first (and oxidative stressors reduced) before dealing with methylation issues.
This makes sense to me, especially as we've tried treating the methylation problems since late 2010, and I just got worse. A lot worse. It also makes sense because we now know that high salicylate foods (see earlier updates) can not only interfere with the krebs' cycle, but can directly damage the mitochondria. A folate deficiency can also damage the mitochondria, and tests showed that due to genetic polymorphisms, I have a difficult time converting folic acid into 'active' folates, so I need to take 2 special forms of these every day (which I've been forgetting to do lately!).
And lastly, I've never really taken all the 'ingredients' necessary to rebuild the mitochondria and fuel the krebs' cycle. I've taken many of them, but not all. I need to get back to the doctor to discuss this with her, or be referred to a specialist if necessary.
Just like a car doesn't run on gasoline alone, one's body needs many different components or 'ingredients' to run efficiently. I hope to see my doctor again before the holidays, but will try to talk with her before that, to discuss how to make sure we're addressing every piece of the puzzle.
Dr. Sarah Myhill, highly regarded as perhaps the best of the ME/CFS specialists in the United Kingdom, has had two papers published in respected journals on this very topic, and she explains it all so much better than I can, at this link:
If you have a moment, I think you'll find it very compelling.
Thanks so much for taking time out of your day to read this update.
October 27, 2013
I'll post a new update within the next few days. Just quickly want to say that while some things are better…overall my mood is a little more stable, and can sometimes walk a little further without pain, and stand for longer periods, my digestion issue is very complicated, and it seems like I still can't tolerate increasing my fat intake without suffering from some very odd and disabling symptoms, mainly in my left leg.
It's possible that, rather than (or perhaps in addition to) mercury interfering with digestion and krebs (energy) cycle issues, it may indeed come back to the salicylate sensitivity or intolerance that I've talked about for several years now. I'll post more details on why we suspect that's the case, within the next few days, if 'energy' permits.
Here's a couple of links on the effects of salicylates, and their potential effects on body systems if they build up:
Thanks so much for stopping by.
October 9, 2013
Hello friends. Thank you for stopping by…a quick update:
The follow-up appointment…
The follow-up appointment went well. The doctor agreed that the thyroid dose should be increased, as my morning temps are better, but still too low, indicating continuing subclinical hypothyroidism, which affects everything.
I've been on the increased dose for about 2-3 weeks, and have a feeling it will need to be increased again, but the doc wants to increase it slowly to prevent any negative reactions, since I've probably been hypo for years, at least according to some expert's definitions.
She also recommended I start a 2-month trial of Siberian Ginseng extract, which is used to help digestion, the immune system, and to help the body cope better with both physical and mental stressors.
Gut and Parasite Test Results…
There was a problem with the CSDA w/Ova & Parasites test in that the lab didn't send enough collection vials for the parasite portion of the test (something I suspected), so that part of the test is being redone at the lab's expense, and I should get the results next week.
But the rest of the test – the part that analyzes the levels and types good and bad bacteria and yeast in the gut – came out better than expected, pardon the pun, with the exception of a very low secretory IgA level. According to the doctor, this could represent both good and/bad news: It suggests that I have no major food allergies or intestinal permeability, but also may be low due to heavy metal (mercury) issues.
The other thing to keep in mind is that I was taking digestive enzymes and supplemental hydrochloric acid during the test, as my digestion is practically non-existent without them (food just stays in my stomach). The doctor added a pancreatin supplement to my protocol, but while it may be too early to notice a difference, digestion is still bad.
The next appointment…DIGESTION.
In fact it's so bad that digestion will be THE focus of the next appointment. I've been taking supplemental hydrochloric acid for 13 years now, and other digestive enzymes off and on for years as well, but they're clearly just 'bandaids', and not addressing what's causing the overall problem. It could be due to low thyroid, or mercury toxicity, or sulfation problems, or…I don't know…but anyway, this serious digestion problem is tops on the agenda.
After all, if I can't digest and absorb what I eat, then how can I expect to get any energy from food? How can I rebuild lost muscle and fat and stop using my own muscles for "fuel"?
The Good News…
Although I had a terrible, terrible 4-5 days about 2 weeks ago, looking at the larger picture, I'm having more 'better' days, and/or sometimes 'hours', I'm sleeping a little better, I have a more positive outlook, and at times am experiencing less pain in my feet.
I'm indebted to you for your support, for your kindness and concern. Thank you!
August 17th, 2013:
Thanks to your donations, I was able to see my ME/CFS doctor last week, so she could get a long overdue update and help assess how to turn this serious situation around.
The appointment went very well considering the multitude of issues to discuss, and relatively so little time to do so, but in less than a week, I'm already noticing some improvements.
The three main questions I had for the doctor were:
1. Is it possible that mercury or other heavy metals are indeed interfering with basic metabolic function, i.e., digestion, my kreb's (energy) cycle, etc?
2. Since my body temperature has been very low for over a decade now, and my TSH level has worsened over time, is it possible that I may be suffering from subclinical hypothyroidism (which also affects everything)?
3. And finally, what's behind my extremely poor digestion, including my almost complete lack of stomach acid, and my inability to increase dietary fats without experiencing circulation-related and other issues?
The doctor reviewed past tests, and agreed that mercury could indeed be causing problems, and suggested resuming chelation, that is after I have my dentist assess the situation. The doc confirmed what I thought I could see – fragments of ancient amalgam fillings along my upper inside gum line that apparently weren't fully drilled out 23 years ago. They would have to be removed and replaced before chelation could continue.
She also suggested a trial of low dose natural desiccated thyroid to address a possible subclinical hypothyroid possibility, which I'll be starting next week. My poor thyroid had slowed down 6 years ago but the TSH level was still within so-called 'normal' range. It's out of range now (higher than 2.5) on the latest lab test from last December. (Unfortunately, the Medicaid lab's 'normal' range is a mysterious .45 – 4.50, so I went untreated, even though the top thyroid specialists treat based on symptoms, especially low morning basal temps). Treat the patient vs. treat the test result…
Re digestion: She ordered a CSDA w/Ova & Parasites (which was just completed and shipped off this afternoon), to check gut bacterial imbalances, and for possible fungal and/or parasite infections.
She recommended that I increase folinic acid and TMG (trimethylglycine) supplementation to levels I was taking back in December (when I was doing better), and also has me taking a supplement called Seriphos, which helps lower high evening cortisol (so one can sleep better). It's also supposed to gradually increase morning cortisol levels…last time mine were tested, they were very low in the AM, when they should be the highest.
Finally, now that the stool test is in the mail, I'll be starting a probiotic that she recommended that has a high level of bifido strains – which are most often found to be very low in ME/CFS patients, and in fact were low in my last test. I'll start those tomorrow morning.
The good news is that within just a few days, I was able to notice an improvement in both my sleep quality and the weird tightness and RLS symptoms in my left leg (which has been terrible lately and preventing me from sleeping). The increased folinic acid also seems to help with sleep and also has helped with anxiety/stress levels during the day.
And the even better news is that thanks to your donations, I'll be able to see the doctor in the next 3 weeks or so to review the test results, my trial of thyroid, etc. – an actual follow up appointment! I don't think I've been able to do this kind of 'normal' follow up in probably 10 years, and could not have even considered it, without your help and the success of the Matching Fund Drive last month.
For that, I am so very, very grateful. You've given me real hope that I can and will get better.
Real hope.
Thank you for taking time out of your day to read this update.
August 6th, 2013
MANY, MANY THANKS to all who so graciously made a donation to the Matching Fund Drive — thanks to your donations it was an overwhelming success!
Thanks to YOU, tomorrow afternoon I'll be going to my first doctor appointment in 2 years. I've got a list of questions and topics to bring up…hopefully we can get to all of them during the hour long appointment. Believe me, I've been counting the minutes these past few days as it's been another one of those bizarre weeks were despite all the good news, there have been several days where I've felt like I'm just not going to make it. But I will…
…and I'll update the blog ASAP to let you know how the appointment went, and also how your donations were used.
Thank you again for your donations and understanding. I'm deeply humbled by your support and excited for the future. I know we can turn this around. It might take (a lot) longer than I would prefer, but I know we can do it.
I'm very pleased and extremely grateful to announce a $750 Matching Fund Drive (see details below)…
But first, a quick update…
As I mentioned last month, test results 3 years ago showed that my Krebs/Citric Acid (energy) cycle was not functioning well at all.
But I was so focused on fixing methylation that this test result got lost in the shuffle. It wasn't until earlier this year that I began to understand how 'broken' it was/is.
If the Krebs/Citric Acid Cycle isn't working properly, then one will have a very difficult time turning proteins, carbohydrates and fats into useable cellular energy.
As you can see below, this cycle involves quite a few different steps, which require different nutrients to run smoothly, and can be inhibited by heavy metals and other toxic compounds. I've marked the 'problem' areas with pink X's, with larger ones representing parts of the cycle that are the most dysfunctional, like for example both succinic and malic acid, which were both undetectable in this test. Not good.
During the last 4-5 months, I've tried to correct these imbalances by providing the required nutrients essential for proper Krebs cycle function, to no avail.
The turquoise X's indicate the places where heavy metals can interfere with energy production. Although I really don't know if they're a factor in my situation, I suspect this may be a strong possibility.
Why? Firstly, because providing the key nutritional factors resulted in no improvements. Secondly, because several tests over the last 5 years showed I had elevated levels of arsenic, and a test done back in July 2009 suggested that mercury may be causing a 'mineral transport' problem. I even started a trial of low-dose chelation for a couple of months starting that September, and as noted in the 11/26/09 update below, I felt better.
In fact in hindsight, that was truly the last time I felt better. So much better that I must've taken my 'health' for granted. I guess I thought was too much of a hassle getting up 2-3 times a night to take the chelation supplements…so I let it slide.
That was a very stressful summer too, yet there were rare days back then when I could walk a mile or two and not suffer too badly the next day. Now I have to use a wheelchair on some days just to get my mail.
But I know I have a bad habit of saying "This is it!" "This is the reason I'm sick", etc. Of course there could be other reasons for my downturn besides heavy metal toxicity – many, many reasons. Like underlying infections, parasites, bacterial dysbiosis, etc.
So I need to get back to the doctor who in hindsight had helped me so much off and on from 2006-2009 (and who helped a friend recover completely) to get her advice and run any tests she thinks may be appropriate.
I also need to get in ASAP to see my dentist, so he can assess the situation, and slowly but surely start dental work that is more than 10 years overdue – haven't been able to afford to have any dental work done since 2003, and that alone could be a huge contributor to the overall decline in my health.
But I cannot do any of this without your help. And I'll need a LOT of help, so that I can see the doctor on a regular basis, order the tests she recommends, go back for follow-ups, and see the dentist as well. Clearly, seeing a doctor once or twice a year has not worked…and I haven't seen an ME/CFS doctor since 2011.
That's why I'm so very pleased and extremely grateful to announce a MATCHING FUND DRIVE!
For the next two weeks, your donation will be matched, dollar for dollar, up to an amazingly generous total of $750, by a dear friend (who wishes to remain anonymous).
Therefore, every $1 donated will provide $2 in benefits. Please don't let this incredible opportunity to double your donation get away!
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account # 35137298) or by clicking on the PayPal "Donate" button on the upper right corner of the blog.
Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
When you click on the PayPal "Donate" button, you'll be transferred to the Daniel J. Becks Special Needs Trust's secure PayPal Page. If you don't have a PayPal account, just click on the "continue" button on the lower left hand side and you'll be able to donate using your credit or debit card.
The Daniel J. Becks Special Needs Trust was set up specifically to raise funds to help pay for appointments, tests, and medical treatments, drugs and prescribed supplements that are not covered by Medicaid, which means about 90% of them. I have no access to these funds, they are paid out by a Trustee specifically and only for medical care and treatment as mentioned above. By law, they cannot be used for any other purpose.
PLEASE HELP so that I can proceed to correct these serious issues by making a donation today! Every $1 donated buys $2 worth of benefits!
Thank you for taking the time out of your day to read this update.
June 8, 2013
If Recovery is Possible..
After three+ years, no doubt some may be asking "If 'Recovery Is Possible', then why have you gotten worse and not better"? Believe me, I've been asking the same question, and have spent the last few months looking for answers.
So besides the toll the move to the new place has taken (see previous update), here are my conclusions:
1. From 2008-2011, I trusted a doctor who came highly recommended, but who's testing methods were questionable, and in hindsight, highly inaccurate. I was desperate, and perhaps gullible. The doctor also claimed to be familiar with methylation protocols, but again, was not. Other patients experienced similar negative reactions.
2. In hindsight, too much emphasis was placed on improving methylation function. While mine needed dealing with, other very important metabolic problems got lost in the shuffle of 16 pages of the NutrEval test results. Very serious issues, several of which may indeed explain my current poor state of health. I'll talk about one of them – the Krebs (energy) cycle – mine is very "broken" – in my next update.
3. Asking for help is always difficult for me, even more so when I'm feeling so bad. But without your help I risk further declines in my health. Not speaking up has resulted in my being unable to raise sufficient funds on a consistent, monthly basis — especially for regular doctor visits and follow-up appts and tests. I realize many folks are dealing with their own health issues and other financial concerns. I also understand perhaps the reluctance some might have regarding making a donation when results so far have been, well, not ideal. All I can say is I've learned a lot from every single experience, both good and bad. Yes, I wish I had learned it earlier, but of course hindsight is always 20/20.
I'm not ready to give up, and I hope you're not either.
June 1, 2013
Again, I'm sorry for not updating this sooner.
The move to the new apartment really wiped me out, much, much more than I ever thought possible. The apartment is really great — so much better than the last place — but the new building is SO huge that it's taking a serious toll on my poor legs and feet. I had slowly increased my ability to walk a little further by the end of 2012, but here, just walking to the front of the building to get my mail wipes me out because the distance is at least four times what it was at the old place. But this downturn makes me even more determined to get better. Sometimes one must really hit bottom in order to see the top.
I'm working on two updates…one to follow in the next couple of days that I hope will help answer the question "If Recovery is Possible…then why have you gotten worse?"…and another which will detail a new plan of action.
Even after all of this, I still believe I and others with ME/CFS can and will recover. I hope you do too.
April 6, 2013 — Brief update
Many apologies for not updating this sooner. I've been completely distracted and somewhat overwhelmed looking for a new place to live, which took about 2 1/2 months, and then finding a place and getting ready to move.
All of this can be overwhelming for a healthy person — trust me when I assure you it's unbelievably overwhelming and extremely disabling for someone disabled with ME/CFS. Having said that, after jumping through a half dozen hoops over an almost four month period, I signed the lease at the new apartment today, and with tons of help from my extended family, ll be moving in a week. Hopefully, after a couple of weeks, if I'm not too battered, I'll be able to give you a more detailed, long overdue update.
Suffice to say it's been a wild ride…and it's more than time for things to calm down so the healing can continue.
I thank you for your patience, and most importantly for stopping by and checking in — it means a great deal to me.
January 15th, 2013
A belated Happy New Year to All!
So much to cover, but will try my best to keep it brief.
As readers of this blog know, 2011 was The Year from Hell, the culmination of a 2-3 year downhill spiral that I was certain I wouldn't survive. 2012, I'm happy to say, was by the end, a better year, with an approximate 20% overall improvement.
I am still basically housebound, but on some days can walk a a little further or stand for 5-10 minutes longer than usual. For someone who a year ago could barely walk to my kitchen, that improvement is encouraging to say the least.
As a result of these improvements, I was able to go up to my sister's in Marysville for Christmas – the first time I've been up there in three years – that felt good.
I did gain about 22lbs at one point, which was really shocking, as I've never gained so much in 6 months in my entire life. It was mostly belly fat, not exactly a good thing, but better than turning completely skeletal. In July 2011 (see below) I was down to 155 – not good at all when one is 6' 2". Now my weight is about 174.
Also, I finally made some considerable progress figuring out a methylation protocol that I can tolerate quite well, based on the Jill James study of children with autism (and methylation problems). I don't have any of the anxiety and irritability issues I had with the supplements prescribed to me in October 2010.
Despite the weight gain, I've continued to lose muscle, mainly in my feet. Knees are still just skin and bones too.
Docs and other patients I've spoken with are perplexed, but it could be due to several possibilities: (low) metabolic function, poor lymphatic function, methylation issues (ongoing, but improving) and also the zinc deficiency (and vitamin D deficiency) that turned up on the SpectraCell test. I've had to increase these very slowly to avoid negative effects, but am now up to 5,000 ius a day with the vitamin D, along with (very recently) increasing the calcium in my diet. Just finally realizing I haven't been getting much zinc.
My Medicaid doc ran an activated "d" test in December, which came back quite high. High activated (1,25-d) levels can be due to serious infections, but also due to low calcium and/or high parathyroid hormone levels, so will have both of those tested within the next month, if not sooner.
My systolic blood pressure has also been creeping up over the last year or two, and was a little too high at the last appt., 155/90 on average, so if that isn't down by the next appt, she wants to find a BP med I can tolerate. High BP is unusual for ME/CFS patients – and mine was low or low-normal for at least 10 years, but it could be high due to many things, so have been looking into those possibilities, and will update next time. Am trying to avoid a BP drug, as folks with ME/CFS in general have very poor drug tolerance due to poor methylation/detoxification issues as mentioned in past posts.
And in the last 3-4 months or so, my long-term low-grade sinus infection has flared up, and became quite bad this past 2 weeks or so, to the point that it's affecting my eyesight as well – eyes get very, very tired, really quickly, especially when I'm on the computer. That could be due to overdoing it, but may also be related to the low zinc (and thus low vitamin a) levels so crucial to good eyesight. They've been overly sensitive to light for years now (common w/CFS) but not this bad.
THE PLAN: A fellow CFS-friend has recommended an osteopath down in the Kent/Maple Valley area, Dr. Richard Koss, D.O. He has worked wonders for her – she was in worse shape than I about a year ago, and is doing approximately 60% better in the last few months. An osteopath can be especially helpful to folks who aren't able to exercise or get around much, as they can help improve lymphatic drainage, improve and strengthen poor posture, and work on improving muscle, tendon, ligament and nerve function by gentle osteopathic manipulation.
His fees seem very reasonable and he's open to adjusting them for those with no income, something that's increasingly hard to find, especially with so many doctors opting out of Medicaid. He doesn't accept Medicaid, but will accept a reduced-cost payment upfront for the first visit, and then even lower, for follow-ups once a month.
I'm confident 2013 will be a year of significant improvement. I think my family would agree that I've learned so much in the last year.
I am so grateful to them, and to the friends who have helped me, sometimes without my even asking for help(!), during this past year — it's really been amazing.
I'm grateful for everyone who has stuck by me, and blessed me with their encouragement, their assistance, their advice and their continuing friendship.
If you'd like to help me continue this improvement — I would be so very, very grateful. Funds raised with help to pay for appointments with Dr. Koss, and also for the supplements, probiotics, etc., that have and will be necessary to build on the recent gains — at least for the near future.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account #: 35137298) , or by clicking on the PayPal "Donate" button on the main page of this blog.
Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
For more info, please click on the "How You Can Help" tab at the top of the page.
THANK YOU SO MUCH, and thank you for taking the time out of your busy day, to read my update.
January 11, 2013
Just a brief update…been fighting a flare of a chronic sinus infection that's affecting my eyesight, not to mention my 'energy', so my apologies for the delay in updating the blog. I will post a comprehensive update as soon as possible.
December 29th, 2012
Time flies waaaaay too fast when one is sick, even when one is healthy. I do have some good news to share, and will post an update by or on January 1st.
In the meantime, thank you so much for stopping by and for your interest and support. I wouldn't be here without your help.
October 6th, 2012 Update:
I apologize in advance for not updating this sooner.
I did in fact do a little better on an experimental protocol from about mid-May to mid-August. I could stand for longer periods, and on a few occasions actually walk a bit further than usual. It felt so great…
Unfortunately, the tendons in my arms and especially my hands became increasingly painful, so I had to stop the protocol, and lost probably 70% of the gains I had made. Depressing yes, but overall, I'm still doing a little better than 2011, (when I basically became housebound) I'm still hanging in there, and I'm still confident I can recover.
I need to raise funds so I can get a followup appointment with April Ward Hauge, a highly regarded and recommended RN who is very knowledgeable about the methylation and genetic issues involved with CFS/ME. I will try to post links and more information by the end of the week.
Thanks so much for taking a moment to read this update. If you can help me out with any donation, please remember no amount is too small, and that every penny goes (by law) to pay solely for medical appts and treatments not covered by Medicaid.
For more info, please check out the "How You Can Help" page, or click on the Paypal button on the right hand side of this page.
Update: June 3, 2012
Dear friends,
It's been a long rough haul, and I hope I'm not pushing my luck, but I think I can actually say that I just may be starting to turn the corner.
As noted below in the January update, I had lost the ability to walk 3 blocks to the grocery store. I couldn't even walk to the end of the block, and worse, there were days when my feet were in so much pain that I felt I could hardly make it from one room to another here in my tiny apartment. I had to move so slowly, and could only stand for 5-10 minutes at best.
It's perhaps a little early to tell, but in the last 2-3 weeks, when friends have picked me up to help with errands, I've been able to walk a little faster, and stand for longer periods – maybe a 15% improvement, which might not sound like much – but I'll take it!
I've think I've also gained a few pounds, and while it's just a little flub around my middle and not muscle, I'll take anything after losing so much during 2011.
I'm indebted to dear friends and family who helped me out while I was almost completely housebound. Believe me, there is nothing more depressing or frankly frightening as knowing you're alone and must depend on others so you'll have enough food to eat.
I am so grateful I can count on them to help me get through the next few months. I'm not sure when or if I'll be able to walk to the store again before the end of this year. I hope so, but need to make sure I pace myself extremely carefully so that I don't fall back into a worsening situation ever again.
If you live in the greater Seattle area and would like to help, please let me know.
I'm also grateful to the a new methylation specialist and two other practitioners – all of whom offered initial consultations for no charge – who assessed my case and have offered their suggestions and reinterpretations of how to improve my situation and get my body to work the way it's supposed to. I'm confident these changes have helped me help myself make the minor, but VERY welcome improvements noted above.
These practitioners can't continue to help me for free, so any donation you can make would be greatly appreciated. Fortunately their fees are very reasonable, and best of all, I don't need to take the dozens of supplements I was drowning in, for the last several years.
In fact, the only supplement I'll need soon is another bottle of Digest Gold.
Anyway, I think – I hope – things are finally looking up. Thank you again for your help and concern, and for taking time out of your day to read this update.
p.s. I did get the Spectracell test done and the results back, and will talk about that in the next update.
Update: February 12, 2012
Thanks to your help, I'm still alive and…well, not exactly kicking, but very grateful to be alive, and looking forward to improving this year.
Because my weight is still way down, and I'm unable to walk much at all due to the resulting muscle loss and extreme weakness, I'm reminded of the comment posted by Julia Rachel on the "Lab Tests" page back in Sept 2010. Her son Blake lost over 50lbs (down to 130lbs at 6'2"!) and was about to enter hospice care.
She commented: "I agree emphatically with your verbiage on diet, metabolic issues, gut issues and the extreme importance of the nutritional assay testing. We used Spectracell Nutritional Assay testing and if it were not for the plethora of vitamins and minerals and essential nutrients in Blake's nutritional regime that (were) prescribed and compounded precisely/specifically to what he is lacking/deficiencies, he would not be recovering as well as he is."
The last I heard he had gained 35 of the 50lbs back, and along with other therapies is continuing to improve, slowly but surely.
So — the goal this month is to raise funds to pay for the SpectraCell Micronutrient Assay. This test isn't at all like standard blood tests; rather than measure nutrients in plasma (which can fluctuate wildly), it measures how micronutrients are actually functioning within one's white blood cells.
Also, this test helps assess one's immune function by measuring T-cell lymphocyte proliferation. And since micronutrient balance is one of the keys to a balanced immune system, these results together will tell me my true functional nutrient deficiencies, which will not only help me rebuild my weakened body, but will also help improve my immune function – a great 2-for-1!
And speaking of 2 for 1, THE ANONYMOUS DONOR IS BACK!
So that means if you can help w/any donation, IT WILL BE MATCHED — BASICALLY DOUBLING YOUR DONATION — but only until the end of the month.
I NEED YOUR HELP, the Trust account is down to only $71.
If we can raise $250, the Anonymous Donor will match that with another $250, giving us a grand total of $500. This will help cover the cost of the SpectraCell test ($380), plus pay for some of the monthly basics, like the Betaine HCL ($49) and the SAM-e ($32), and others listed in previous updates.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America (please bring the account #: 35137298) , or by clicking on the PayPal "Donate" button on the main page of this blog.
Please note that if you choose to donate through PayPal, you don't need a PayPal account — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
For more details, please click on the "How You Can Help" tab at the top of the page.
It's been another rocky 2 months or so. I seemed to stabilize a little by mid-December, but then in the past month have had increasing difficulty walking, especially when I tried to add more fat (and some natural sugar) to my bland diet. I currently can no longer walk to the grocery store (3 blocks) without coming home in way too much pain and exhaustion, probably due to a lack of glycogen stores, as a result of the continuing adrenal/cortisol problems, terrible digestion, and the long-term high stress levels mentioned in the last update.
So I am now basically housebound and have to cut way back on physical activity while at the same time trying to maintain what little muscle I have until I can turn this around. I'm indebted to friends and family for helping me get groceries and do other assorted errands during the past six weeks or so. If you can help, please let me know.
I've received conflicting dietary advice on what I should be eating when it comes to helping my adrenal glands calm down and restore proper function. I was initially counseled to substantially increase fat intake while minimizing carbohydrates, due to my diagnosed 'fast oxidation' rate, but have since read otherwise, that one needs to increase carbohydrates in order to prevent further muscle catabolism due to a lack of liver glycogen. I have felt a little more stabile when I increased the complex carb ratio. I'm trying to get a 2nd opinion on this issue, as I certainly can't afford to lose more muscle and become even weaker.
Despite this continuing downturn, I hang on to the small improvements I've made in other areas; I'm not quite as 'wired' (anxious) at times so I can usually sleep better and take much needed naps without my mind racing on and on.
I was able to do this thanks to your donations. Here are just a few of the things that made a positive difference during the past 2 months:
Seriphos: Helps to lower high cortisol
Lysine and Arginine: Also helps lower cortisol.
Glycine: An amino acid that helps detoxify salicylates and also increases glycogen levels.
No-Fenol: A digestive enzyme that also helps to reduce reactions from foods high in salicylates/phenolic compounds.
Glucosamine/Chondroitin Sulfate and Hyaluronic Acid: Helps provide sulfates which are used up processing salicylates/phenols. See link for info:
Betaine HCL: Helps provide hydrochloric acid so I can digest protein. My hypochlorydia should improve as my zinc status does.
SAM-e: Helps with methylation problems, and also overall liver function, joint function and occasional depressive moods.
Unfortunately, none of the above are covered by Medicaid.
The Silver Lining?
I feel that if I can improve in small ways like better sleep, even for small periods of time, then I can improve in other areas as well. Thus I'm still confident that with the right guidance and assistance, I can turn this around, and that with your continued help, 2012 can finally — indeed will be a BETTER year.
But I can't do this alone — I need YOUR HELP TODAY.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account #: 35137298) , or by clicking on the PayPal "Donate" button on the main page of this blog.
Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
For more info, please click on the "How You Can Help" tab at the top of the page.
I need your help.
PLEASE JOIN THE CELEBRATION OF MY BIRTHDAY on November 29. Each $10 contribution to the Daniel J. Becks Special Needs Trust donated during the next month will light a virtual candle on my (virtual) birthday cake! The light from these candles will shine on my spirit and give me renewed hope — after a very challenging year.
In addition, the first 7 contributors of $100 or more will receive a 2008 Bald Eagle Young Collectors set (featuring an uncirculated Mint condition Bald Eagle Half Dollar coin in the original US Mint sealed wrap) as a token of appreciation for your help. They make EXCELLENT Holiday gifts!
(These Collector Sets have been graciously donated by the anonymous donor who helped so much with the July fundraiser.)
Your donations will help pay for continuing tests and treatments not covered by Medicaid — which currently include the following:
Prescription Nebulized Glutathione $108.84 (includes overnight s/h)
Enzymedica Digest Gold $79.98 (potent digestive enzymes help digest carbs, fats, proteins and fiber)
Betaine Hydrochloride $52.60 (for hypochlorydia – very low stomach acid)
Pancreatin $14.68 (to support pancreatic function)
These are just a few of the items not covered by medicaid. Also needed are specific mineral combinations prescribed to help rebalance/treat copper overload/zinc deficiency (which I have been told will take at least a year), along with hyaluronic acid w/chondroitin for joint, tendon and ligament support — all of which are under severe catabolic stress due to excess cortisol/adrenal problems (see below for more details).
I also may need to get the Spectracell MicroNutrient test (highly recommended in the comments section by Julia Rachel on the Lab Tests page) which measures how micronutrients are actually functioning within the patient's white blood cells, and are considered a much more accurate assessment than standard RBC tests. This test currently costs $380.
If you can help out with any amount, please click on the "How You Can Help" tab at the top of the page, or check out the info and click on the Paypal button on the upper right-hand side of this page.
(You don't need a Paypal account in order to make a donation through PayPal, just a credit card.)
Any donation you can give will be GREATLY appreciated. The goal is to raise $700 – $850 which should last until late January, early February.
Wishing Everyone the Best for this Holiday Season and the New Year to come!
11/21/11 Update:
Wow. I can't believe two months have gone by since my last update. Just been very weak, extremely stressed, especially before and after the colonoscopy.
Test results:
I got the results back from the Methylation Nutrigenomics panel, (which is very complex and thus difficult to explain, but turns out I do have some genetic polymorphisms commonly seen in CFS/ME and other chronic conditions), the CDSA+Ova & Parasite test — which came back w/no parasites, good levels of most healthy bacteria, and also a tissue (hair) mineral analysis, which was recommended to assess a possible copper toxicity/sulfate deficiency issue — another kind of complex topic to describe, but that confirmed that my poor adrenal glands are severely exhausted.
On Friday the 11th, I went in for the long-dreaded colonoscopy/endoscopy. Actually wasn't dreading the procedure itself, it was the prep, which was kind of tough (with my electrolyte imbalances), but the actual exam was like some bizarre, too-comfortable dream. And the doc said everything looked good. And it did — I looked so squeaky clean inside. She took a couple samples to make sure, and should get those results in a week or so. 11/25: Got the results back: "The biopsies from your stomach and small intestine did not show any signs of active inflammation, infection or precancerous changes or cancer."
So then why am I so incredibly sick and disabled?
I had a good talk with a dear friend the day before my colonoscopy.
She wondered aloud if all these tests/treatments I've had are so legit, then why have I gotten so much worse during the last year and a half?
And why can't I just take drugs prescribed by an M.D.?
Excellent questions. I'll try to explain, the best I can, and hopefully the two questions will help answer why I'm so sick.
CFS is a very difficult illness for most people to understand. It's also incredibly underfunded when it comes to research, so most doctors don't understand it as well. And because there are so many variations of CFS, so many different potential causes and other factors involved – it's not surprising that treatments can be hit or miss.
I'm the first one to admit that I've experienced a decent amount of 'misses' during the past year or so, which of course I wish had not occurred. I'm hanging on by a thread, something I never imagined would happen a few years back.
In hindsight the doctor I was working with from 2008 to late 2010 perhaps wasn't knowledgeable enough about the methylation problems. Perhaps I put too much trust in this doctor, as she had come highly recommended from a patient who has recovered. But in my ex-doctor's defense, the discovery of these problems in CFS patients is relatively new (2006), so there is still a lot of learning going on, even amongst experts. Also, the methylation test showed I was using my own muscle for fuel, at least 2 months before the treatments the doc prescribed were even started.
Why can't most people with CFS tolerate drugs?
The liver helps remove toxic and metabolic waste products from the body by converting them to a form which is soluble in water, so that they are easily eliminated in the urine formed by the kidneys.
The use of pharmaceutical drugs is based on their being eliminated at certain rates by the body's detoxification system, found primarily in the liver, kidneys and intestines. In most people, this detoxification works smoothly, automatically.
However, many CFS patients have polymorphisms in their detox enzymes, including CYP450 enzymes and Phase II detox enzymes.
Because of these polymorphisms, many CFS patients are genetically unable to detox pharmaceuticals at normal rates, and cannot tolerate them. In addition to this, all patients who have the glutathione depletion and a methylation cycle block suffer from biochemical inhibition of their detox systems, whether they have the genetic polymorphisms or not. (Some of these polymorphisms are also found in Parkinson's disease, which my mother suffered from.)
Most people with ME/CFS have a partial block at methionine synthase, which is in the methylation cycle, and that is near the beginning of the sulfur metabolism. This partial block causes dysfunction of the entire sulfur metabolism, which includes methionine, SAMe, homocysteine, cysteine, glutathione, taurine, sulfate, and many other important sulfur-containing substances, all very critical in detoxification, metabolism of foods (like salicylates and phenols), and also immune function.
I do take clonazepam, and seem to tolerate it, but it's a drug that creates dependance and tolerance (and also depletes b12, folate, biotin, can cause anemia, low white blood cell count…not good for any chronic illness), but without it for now, I'd probably be dead. I hope to get off of it eventually, and hopefully that will be possible as my methylation, sulfation, detoxification and DIGESTION become functional.
In the meantime, I'll ask my medicaid doc if she thinks IV nutrition would help me keep from losing any more muscle and if medicaid will pay for it. I've probably lost another 5lbs since July…maybe more.
I'm also trying to stay in contact with the copper overload specialist who is certain that is underlying all these other problems. I've been running this by my old M.D. (who now lives in South Dakota).
I need to find a doctor here in the Seattle area who is VERY familiar with methylation/sulfation issues — and successful in treating them. If anyone reading this knows of such a doctor, please contact me, or leave a comment below.
In the meantime, your donations are urgently needed and will be GREATLY appreciated — I won't survive without your help. I don't know how else to stress that any further. The Trust is down to about $65-75 dollars. Many thanks for taking time out of your day to stop by — I really, really appreciate it.
9/14/11 Update: Good News & Bad News
First the good news:
Again, thanks to the generous donations from caring and compassionate folks who participated in the Matching Funds Donation drive in July, I was able to get the following much needed tests:
The Nutrigenomics Methylation Panel $495
The CDSA + Ova & Parasites Test $295
Plasma Cysteine $85
…and also was very grateful to have enough to get a refill on the methyl-b12 shots and the nebulized glutathione.
Thank you all again SO MUCH for your help! Thanks to you, we raised more in one month, than we've raised in six months, or even longer.
Now, the bad news.
I continue to be very, very fragile and extremely weak, and paradoxically also very anxious and agitated at times. I can barely get out of bed in the morning, yet I can hardly sleep when I need to. My muscles twitch, my feet tingle like I have multiple sclerosis, even though that was ruled out on more than one occasion years ago. Plus, I'm not able to gain any weight as there are so few foods that I can tolerate due in part to the salicylate/phenol intolerance. It's gotten really bad though…I've even lost muscle in my feet and toes. That should eventually improve, but right now it's not. Could also be due to the methylation/sulfation problems, or to intestinal parasites or other gut pathogens — will get those results next week at the docs.
But here's the "new" bad news: It may also be due to elevated copper levels. Copper toxicity or what some call "copper overload" can be very difficult to diagnose, but I've spoken with a couple of specialists, and also several patients over the past 2 months or so, and at this point, it's looking like I may indeed be copper toxic.
In the CFS/ME community, there's a common expression…"Wired but Tired". Well, if one has high levels of copper, then one can become extremely wired, and incredibly, excruciatingly tired and weak.
How does one become copper toxic? Well, in addition to being prescribed a copper supplement (and/or a zinc/copper supps) several times over the past 12 years (by doctors who came highly recommended), this also ties in with other heavy metal buildups like the mercury, due to the methylation problems that I've had possibly since birth. (The genetic methylation panel results take 8-12 weeks to get back, so will have more info by October on that matter.)
It also can have a lot to do with diet, as discussed in the article below.
Suffice to say that beginning around 1999-2000, I started having increasing difficulty tolerating fatty foods, especially fried eggs or potatoes. They just made me feel incredibly uncomfortable and weak. So I avoided those, and other fatty foods for the most part, and over a period of time, and very gradually ended up tolerating fats (and high meat meals) less and less, with the exception of perhaps nuts. According to the experts I spoke with, this kind of semi-vegetarian diet tends to be very high in naturally occurring copper, and very low in zinc.
Zinc is essential for proper protein, fat, and carbohydrate metabolism, but high copper can prevent zinc from being utilized. I did a "Zinc Tally" test about a month ago, and found out my zinc levels were pretty much zilch. (My sister took the same test, and passed with flying colors.)
So anyway, that may also explain why I'm unable to gain any weight, and in fact may still be losing it, because not only is my methylation messed up, but my zinc levels are very low. The problem is, this can't just be fixed by taking more zinc…it's unfortunately very, very complex and complicated.
Copper buildup also affects the adrenal glands and vice versa. If adrenal function is weak, then copper will build up — and my adrenal function has been weak since at least 2000, when it was first tested. 11 years ago. As one of the experts stated a few weeks back, "it's amazing you're still alive".
Elevated levels of copper have also been connected to Parkinson's disease, which my mother suffered and died from.
Anyway, it's very complicated, and the depressing part is that it apparently takes about 2 years to resolve. I have to be able to gain some weight, or at least stop the weight loss within the next few months, or I won't be able to walk (it's getting incredibly difficult to get to the grocery store twice a week, let alone stand in the kitchen, cooking or cleaning up after myself). So I have calls in to my old doctor (who's now in Indiana), and will be talking to my new doc about this new issue next week.
If any of my friends in the Seattle area know anyone who could help me out with chores or errands, please let me know by leaving a comment at the bottom of this or any of the pages on my blog. I could really, really use the help.
Another piece of bad news: The Trust account is down to approximately $141 dollars. The appointment next week costs $180.
If you can help out with any amount, please click on the "How You Can Help" tab at the top for more info, or click on the Paypal button on the right-hand side of this page. (You don't need a Paypal account in order to make a donation through PayPal.) Any amount would be GREATLY appreciated.
Thanks to the generosity and compassion of those who made a donation last month, we met the Matching Funds Challenge, and raised $1,170 — $670 + $500 in Matching Funds — and for that I am SO VERY, VERY GRATEFUL
Thanks to your donations, I was able to order the Comprehensive Digestive Stool Analysis so we can check for bacterial, fungal, protozoal and parasite infections that may be contributing to my weight loss — and can pay for the doctor visit to go over those results.
In addition, I will be able to order the NutriGenomics Metabolic Pathway & Methylation Analysis, so we can finally find out which specific genetic methylation issues are preventing me from detoxifying properly and most importantly, from those results, we will finally learn how to bypass these genetic 'blocks', and begin to restore proper liver detoxification, and immune function. (If the methylation cycle doesn't work, the immune system malfunctions, the detoxification and antioxidant systems malfunction, and thus one's ability to heal and repair damaged cells is dramatically reduced. In other words, we stay sick for years, sometimes for decades, if methylation isn't working properly.)
The genetics testing is $495, the CDSA is $295, and the doctor's visit/consult will be $180 — a grand total of $970 — so you can see how I COULD NOT HAVE DONE THIS WITHOUT YOUR HELP and that of the anonymous donor who so generously offered to match donations up to $500 during the month of July.
I received donations and messages of concern and support from old friends and family here in the Seattle area, to people I have never met, from California, Illinois, New Jersey, North Carolina, Ontario, Canada — even as far away as the Netherlands. I cannot express how much this has meant to me, except to say that you have given me hope…something that was quickly slipping away just a few weeks ago.
I am so very humbled by the generosity and kindness shown to me during the past 3 weeks and will forever be grateful.
MATCHING FUND DRIVE — Today until July 31st
As you can see by the pictures below, my health has deteriorated substantially since last August. Even though I feel at times like I just cannot go on one more day — I do not want to die, and I'm still confident I can recover.
And right now, for just the next 2 weeks, any donation you can make will be matched, dollar for dollar (up to a generous total of $500) by a donor (who wishes to remain anonymous).
This is an amazing opportunity — it means we would finally be able to pay for the following three critical tests:
1. Nutrigenomic test with Methylation Pathways Analysis $495
2. Kryptopyrrole (Pyroluria) Test $89
3. CDSA (Comprehensive Digestion and Stool Analysis) + Ova & Parasites $290
These tests will help decipher the incredibly complicated methylation issues (leading to very specific recommendations for treatment based on genetic polymorphisms), help determine if I have kryptopyrole/pyroluria (which causes zinc & b-6 depletion, and possibly high copper levels), and determine if I have any infections or parasites in my gut.
Donations to the "Daniel J. Becks Special Needs Trust" can be made at any Bank of America branch (please bring the account #: 35137298) , or by clicking on the PayPal "Donate" button on the main page of this blog.
Please note that you don't need a PayPal account to make a donation — they now safely and securely accept Visa, Mastercard, American Express, etc., without any need to sign up or register.
When you click on the PayPal "Donate" button, you'll be transferred to the Daniel J. Becks Special Needs Trust's secure PayPal Page. If you don't have a PayPal account, just click on the "continue" button on the lower left hand side and you'll be able to donate using your credit or debit card.
For more info, please click on the "How You Can Help" tab at the top.
THANK YOU SO MUCH. And a Special Thank You to the Donor who has made this all possible!
p.s. Please note that I am unable to update this very often, but will do my best to post updates with donation totals during this Matching Fund Drive. The current balance is $174.19.
7/25/2011: UPDATE: The trustee told me that we've received 2 more donations since yesterday, adding an additional $100 to the amount above. That will be matched dollar for dollar, for a total of $340!
MY DEEPEST THANKS TO ALL! I'm so very grateful for your help.
Don't let the smiles fool you…
These two photos show the muscle I've lost in the last 10 months…13 lbs so far. And these weights includes clothes, shoes. The actual results are probably 5lbs less. Not good at all for someone 6 feet 2 inches tall.
No doubt some may be asking, "If recovery is possible, then why is this happening, why have you gotten worse?"
Certainly a good question. No doubt there are several reasons, including overwhelming stresses during the past 3+ years, but the main one has most certainly been my inability to afford consistent, ongoing medical care and specific tests needed to figure out precisely what's wrong in my particular case.
It's been very difficult to raise funds, but that may change soon, as an anonymous donor has come forward and offered to match any donation made (up to $500 total) during the month of July.
I'll post more about that in my next post, hopefully tomorrow night. Thank you so much for reading and for caring.
6/17/2011 Update:
Can things get any worse? I suppose so, but hope not. Right now I'm clinging by a thread…feeling all alone, and really worried I won't make it, unless I can get some help really soon.
I've had a few moments where I felt microscopically better and had more hope during the past month, but have also hit rock bottom — at least I hope that's what it was! — about 10 days ago. Thought I was going to die, seriously, after a severe reaction to a high-salicylate snack. Within an hour of eating it, severe anxiety and weakness, and a sense of almost complete hopelessness came over me. And the effects have lasted for days.
Salicylates occur naturally in almost fruits and vegetables as a preservative, to prevent rotting and as a defense mechanism against pests, harmful bacteria and fungi, so it's pretty hard to avoid them. The reaction to a natural salicylate can be as severe as that to a synthetic additive if the person is highly sensitive.
In some people (estimated at 15-20%) too many salicylates and/or phenols can impair methylation, specifically the PST enzyme needed to process them — which then causes these severe reactions.
Here's a link with some stories on people with "chronic fatigue" who got better after eliminating certain foods and artificial colors (high phenols) from their diets. This one kind of rings a bell:
"My weight plummeted from an athletic 58kg to a frightening 32kg in the space of about 9 months. It seemed the more food I ate the more weight I lost. Taking a gamble, my doctor sent me off to the food allergy clinic at RPA in Sydney, and we found what was to be the turning point in my battle with CFS. I was extremely sensitive to chemicals both natural and artificial in foods and perfumed products."
And of course there's a lot more info on the methylation problem in my earlier updates since last August when this problem was first discovered.
On a better note, I was able to consult with the M.D. I mentioned last month, who prescribed nebulized b12 and glutathione. I did this for about a week, and think it might have helped a bit — I did have an hour or so on a few afternoons where I felt surprisingly a little more "energy" and a better outlook — but this all came crashing down during the salicylate crisis above, and I've not been able to get in touch with the doctor since then. (I did hear back from him via email Sunday…we're trying to set up a phone consult…I will update when I can.)
I will try nebulizing again after consulting with the doc, and see if I can figure out if it's overall beneficial, or if perhaps the process may be causing me to release too many stored toxins too quickly. I know that this sounds hysterical and melodramatic, but I sincerely feel like my life is slipping away from me, and just don't know what will happen. I certainly don't want to die.
There are several tests that could help figure this out: The CDSA w/Ova and Parasites, mentioned in last month's update, a Pyroluria test, also mentioned earlier, the advanced genetic testing to find out which methylation polymorphisms I may have — and if I keep losing weight, I may need IV amino acids or some other type of IV therapy.
The CDSA Test is approximately $290, the Pyroluria test is $95, and the comprehensive Nutrigenomic test with Methylation Pathways Analysis is $495. B12 shots, syringes, if prescribed, along with other possibilities would require additional funds which I do not have.
Can things get any better? I hope they can, but I can't get any of the testing I so desperately need to find the answers to this complicated puzzle, without your help.
Please help me save my life, and make your donation today.
5/24/2011 Update:
This was another tough, rollercoaster month, but pieces of the puzzle may finally be coming together. Yes, I've said that before. This time however, despite the fact that my health has continued to go downhill quite dramatically, there may be a silver lining in this downturn.
While I wasn't able to raise the funds to pay for the genetic tests (below), that may have been a good thing, as from the reading I was able to do, it's quite likely that I probably don't have the problematic CBS upregulation gene due to the fact that my homocysteine levels were/are on the high side.
I mentioned in the last update that I guessed I had lost about 8-10 lbs. I was weighed during my appt with my Medicaid doc on 5/11, and sure enough, I've lost 10 lbs in the last six months since I'd seen her. Not good of course (I'll finally post some pics below), but this certainly got her attention. She's referred me to the gastro dept a Pac-Med to get a colonoscopy, something we'd put off a couple years back because my PSA level was so low, but probably a good idea to take care of, to rule things out.
It would also be a good idea to do the CDSA with ova & parasites test – something we had to put off for now due to lack of funds. (The last test in 3/2010 showed an unidentifiable parasite, along with elevated levels of prevotella, Streptomyces, and mycoplasma bacterial species. No antibiotics were prescribed at that time; instead high-dose, multiple strain prescription-strength probiotics were tried.)
On the flip side, in just the last 2 weeks I've slowly been able to start taking the methylation supplements — the two forms of b12 (methylb12 and adenob12), along with tiny amounts of methylfolate (the active form my body is unable to produce from folic acid), without the extreme reactions I experienced earlier in the year, or as extreme…at least not so far. That is an encouraging sign after so many months of intolerance to these critical bioactive supplements. These should help lift the partial methylation cycle block that has prevented my body from detoxifying toxins, heavy metals and other ubiquitous environmental chemicals as discussed in previous updates since last October. They should also help lower my elevated homocysteine levels.
But with all this emphasis on these methylation issues, in my severely brain-fogged state, I completely overlooked the main reason why methylation is so important with regards to CFS/ME.
As described below by Dr. Sarah Myhill, if methylation is not working properly, then glutathione levels drop, creating oxidative stress, removing protection from b12, allowing toxins to accumulate, and causing the immune system to become dysfunctional.
GLUTATHIONE. The body's "Master Antioxidant".
@font-face { font-family: "Verdana"; }@font-face { font-family: "Verdana"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: "Times New Roman"; }.MsoChpDefault { font-size: 10pt; }div.WordSection1 { page: WordSection1; }
Glutathione plays a major role in detoxification pathways. This deficiency impairs the body's ability to get rid of toxins, whether environmental or by-products of cellular metabolism.
CFS patients may slowly become toxic, storing away poisons in fatty tissue, muscles, organs and the brain. This cellular detoxification failure can make some CFS patients "canaries to their environment". Detoxification programs that have been successful in other conditions can actually put some CFS patients in the hospital if their glutathione deficiency is not first addressed."
A study published in the Journal Lancet showed that plasma glutathione was highest in young healthy adults, and lower in elderly outpatients and lowest of all in elderly inpatients. In other words, the sickest had the lowest levels of glutathione. (The Lancet Volume 351, Number 9103 28 February 1998.)
Looking back at my methylation panel test results, my oxidized glutathione level was 0.46, or (very close to the high range cutoff of 0.50), while the 'reduced' glutathione level was low at 3.9, right next to the bottom edge of the 'normal' reference range of 3.8 – 5.5.
And that was nine months ago. Who knows where it's at now.
But could one of the reasons I had such a difficult time starting the methylation protocol be because my reduced glutathione was so low in the first place? Van Konynenburg has suggested that supplementing with glutathione "might help with the excitoxicity that many people experience on this type of treatment (anxiety, insomnia, a "wired" feeling, hypersensitivity of the senses)" because starting the methylation protocol may temporarily lower glutathione even further.
Quoting Dr. Van Konynenburg: "Further glutathione depletion would increase the state of oxidative stress in the mitochondria of the neurons. This would intensify the partial blocks in the Krebs cycle and the respiratory chain, and that would further lower the rate of production of ATP. ATP is needed to power the membrane ion pumps in the neurons, and they normally maintain the electrical potential across the cell membranes. This potential in turn determines the firing threshold for action potentials (nerve impulses). When the potential is lowered, the neurons become more sensitive and fire more readily. Thus, this results in increased excitotoxicity.
"If this is actually what is going on, there may be some benefit to supporting the glutathione during treatment to lift the methylation cycle block, at least early on."
So why am I so (cautiously) excited? Last week while looking through some old file folders from 2002, I came across receipts I had from a compounding pharmacy for both methyl-b12 shots and also nebulized glutathione that had been prescribed by a doctor I was consulting with at the time who subsequently moved out of state. I remember giving myself b12 shots – didn't know they were methyl-b12 – but had completely forgotten about the nebulized glutathione (the joys of brain-fog!). I found receipts starting in December 2002 and lasting until May 2003.
And what's really interesting is that prior to that period, I had almost the exact identical irritating and disabling multitude of symptoms that I've experienced during the last year or so, except not nearly as bad. (I'm a lot older now of course and had been getting worse since early 2008).
But even more interesting, and inspiring, is that during 2003-2004 I experienced a definite improvement in those symptoms. The b12 and glutathione may have built up in my system, and lasted for a couple of years before starting to decline.
Could this improvement happen again? Of course I don't know — that was 8 years ago, and I'm a lot sicker now, but am very anxious to find out, and will be consulting in the near future with the same M.D. who prescribed the above so many years ago, and will update the blog as soon as possible.
Also, it should be noted that muscle weakness, anemia, twitching, tingling, neuropathy and muscle wasting (muscle loss), are all symptoms of folate and B12 deficiencies — two nutrients I have not been able to take, let alone metabolize properly for almost 8 months now — and was low in when I was tested last August. The weight loss can also be a sign of other b vitamin deficiencies as well, but I haven't been able to tolerate the b complex, yet. Of course it could be due to infections or possibly cancer, but we won't know until the colonoscopy can be done. (I do have all the symptoms of niacin and other 'b' deficiencies as well.)
Wasting Away…
Here are a few pics that show the muscle loss in my hands alone, along with a couple pictures of my emaciated, bloodless feet:
First, my right hand back in October 2010 — already some muscle loss (note the sagging skin and lack of webbing between the thumb and index finger)…
Next, a photo taken 3 weeks ago on May 9th:
And finally, this morning, looking about 90 years old (at least in person), the knuckle bone protruding and even more muscle loss at the wrist:
Next, my bloodless, dehydrated feet, taken several months ago (low blood volume is common in CFS/ME, but this is "lower" blood volume!):
Please help me turn this around by making a donation today so I can continue with proper testing and treatments. I'll update the Trust total graphic very soon.
Thank you so much for taking the time to read this update.
A quick update: Had a good appointment yesterday. Doc is very concerned about my weight loss/muscle loss, and offered several suggestions, including switching to a high-dose pancreatin supplement to try to help metabolize fats, carbs, and proteins while we continue to unravel the methylation and other detoxification blocks that are creating those problems and are probably the root cause of my CFS/ME. (as noted below.)
Regarding methylation, I'll repeat part of what I had posted back in September (and had forgotten about until yesterday!), where Dr. Sarah Myhill, one of the very few M.D.'s in the UK with any success treating CFS/ME, talks about methylation issues, and this time will highlight in bold type the issue which may be a huge key to unraveling this frustrating and complex problem, and also explain why I've had such a difficult time with it so far:
"The following is Dr. Sarah Myhill's summaryof the Glutathione Depletion-Methylation Cycle Block Hypothesis for CFS:
1. The person inherits a genetic predisposition (polymorphisms in several of certain genes) toward developing CFS. (This genetic factor is more important for the sporadic cases than for the cluster cases of CFS.)
2. The person then experiences some combination of a variety of possible stressors (physical, chemical, biological, psychological/emotional) that place demands on glutathione, the body's 'master' antioxidant.
3. Glutathione levels drop, producing oxidative stress, removing protection from B12, allowing toxins to accumulate, and causing the immune system to become dysfunctional (Th2 dominated).
4. Toxins react with B12, lowering the rate of formation of methylcobalamin. Lack of sufficient methylcobalamin inhibits methionine synthase, placing a partial block in the methylation cycle.
5. Sulfur metabolites drain through the transsulfuration pathway excessively, pass through sulfoxidation, and are excreted.
6. A vicious circle is established between the methylation cycle block and glutathione depletion, and the disorder becomes chronic.
(then…also from September 2010):
"If I find that I just cannot tolerate this protocol, then that would suggest that I may have some sort of genetic polymorphism which would require a different test."
This test is called the Nutrigenomic Comprehensive Methylation Panel with Methylation Pathway Analysis.
It is very different from the standard Methylation Panel done late last summer because it tells the patient precisely which specific genetic polymorphisms are causing the problems, and thus can give even more detailed guidance on not only what specific forms of supplementation and diet will be helpful to bypass these defects, but also those which may be worsening the problem.
With your help, I hope to be able to raise the funds for this test, which is currently priced at $495. It takes 10 weeks for the results to come back. If you can make a donation of any amount, I would be most sincerely grateful.
This has been a LONG, LONG road, with lots of complications, and a lot of downturns recently, but someplace deep down inside, I'm still confident, that with enough information, guidance, and help, I can recover from CFS.
Thank you so much for taking time out of your busy day, to read this update. I really appreciate it.
p.s. I'll try to post some scary, depressing pics of the muscle loss in my arms and hands within the next week. Not a pretty picture at all, in so many ways. The doctor was really shocked yesterday (I hadn't seen this particular doctor in 2 years). I'm guessing I've lost about 8-10 lbs, and I was already very thin in the first place.
It's been about six months since I've seen a doctor, so I need to get in and get some new lab work done (another CDSA test to check on bacterial imbalances and potential gut-related pathogens — see the "Tests" page for more info).
I'll be returning to the highly regarded specialist I've been fortunate to see a few times — in 2007, and again in 2009 — to get a second opinion on how to proceed from here on out with the methylation issues (described below and on the "Mercury" page) and how to work on improving my digestion and malabsorption issues. As noted below, I've lost a lot of muscle during the past six months, most notable in my arms, hands and feet. Hands look especially skeletal. Not good.
The Trust balance is currently at $238.95 — enough to see the doctor, but not enough to pay for the CDSA or other possible lab tests she might request.
Please visit the "How You Can Help" page so you can see how your donation can help in so many different ways, plus how you can be eligible to receive a Special Thank You gift!
Remember, no donation is too small. You REALLY CAN Make A Difference!
Thank you!
Thank you so much for taking time out of your day to check out my blog updates. Because of my recent adventures with heavy metals, especially mercury, I've decided to add a separate page on Mercury Toxicity.
The first post is my attempt to explain why some people become ill from mercury and other heavy metals, while others do not. I hope you'll check it out.
I'll be updating that as often as I can, and also doing the same on this page. It's been a rough rollercoaster with changing symptoms — very, very unsettling and uncomfortable most of the day — hence my inability to update this more often. I will make an effort to detail those odd symptoms very soon, with the hope it may help others.
Despite the rocky past 4-5 months, I'm still confident that with your kindness and help, I can and will improve, and eventually recover.
Please consider making your donation today by checking out the How You Can Help Page.
Many apologies for the long delay. It's continued to be a very rough rollercoaster during the past 2 months, but I think I can finally say that things have stabilized a bit, and treatment going forward will concentrate on slowly chelating (removing) the mercury, arsenic, cadmium and other heavy metals that have built up in my body over many years, causing so many problems (see below).
A long overdue update with more details will be posted in the next couple weeks.
12/12/2010 Update
Just have time/"energy" for a quick update now, but wanted to let people know that things are 'microscopically' better the past 2-3 days. Still having a lot of incredibly uncomfortable neurological problems, especially in my legs, but the severe cramping and extreme anxiety is not quite as debilitating.
After consulting with my doctor and also methylation expert Rich Van Konynenburg PhD., the consensus seems to be that indeed unblocking the partial methylation cycle block (see below) released long-stored toxic metals (mercury and arsenic) too quickly, almost certainly causing the severe reactions described in the last post below.
In other words, the partial methylation cycle block problems prevented my liver from properly detoxifying the heavy metals and other toxins I've been exposed for most of my life. Starting the several types of folate and 2 types of b12 all at once released the built-up toxins too quickly, so I stopped them 2-3 weeks ago, and have increased other nutrients and antioxidants (like taurine, selenium, zinc and vitamin e) that help 'pacify' the mercury, and calm things down.
Everyone has different reactions, so it was impossible for anyone to know exactly what type of reaction I would have, so I don't blame anyone in any way.
The silver lining in this very dark cloud is that the severe reactions helps confirm the heavy metal problem (diagnosed through hair and blood testing both in 2009 and 2010) and also the methylation problem (diagnosed 3 months ago). In hindsight, I slowly started having increasing problems about a 3 weeks after I started the methylation protocol (see below).
Of course I would've preferred not to have gone through such an incredibly uncomfortable month or so, but we may have never uncovered the true seriousness or the extent of the heavy metal problem, nor would I have taken it seriously (as I should have in August of 2009 when I first got preliminary results back) had I not tested for and been diagnosed with the methylation defect back in October.
So nevertheless, as incredibly uncomfortable as I still am, I'm confident that this hellish experience has proven that this may be a definitive key to resolving my CFS — at least a huge part of it. I just need to go a lot slower.
Speaking with others in similar situations, I've learned that it can take a year or possibly longer to safely chelate mercury, etc., but if that means I'll finally get back to feeling even 70% of how I felt say 10-12-14 years ago…I'm very happy with that.
As always, we still need your help to continue with treatments and appointments. I haven't had the energy to re-do the Trust graphic, but the balance now is approximately $147. Any donation you can make will be greatly, greatly appreciated. As always, please see the "How You Can Help" page.
Thanks for taking time out of your day to read this update.
Just a brief update, will try to write more when I can, and hopefully when I'm feeling a lot better.
Have had a terrible month, unfortunately. Not sure why exactly…could be a strong reaction to the methylation supplements (doc said I'm 'dumping heavy metals', which can cause some of the symptoms listed below), but that's why some people have to start very, very slowly with the protocol, as mentioned below.
It could be due to other reasons too — I'm so sick of taking pills and supplements, and so I've no doubt skipped many doses of things like coenzyme q10, and also l-carnitine, both of which have been very helpful in the past. They help both with mitochondrial function and l-carnitine helps one utilize fat for energy and also lower elevated ammonia levels — mine were very high on the NutrEval test. These have also helped many with CFS improve their quality of life…so will try to be more diligent about taking what's prescribed, although have stopped the methylation supps for now, to see if things will calm down. It's very frustrating to say the least, because I NEED b12 and folates, but if they're causing an increase in symptoms, then I need to back off and go slower. And even more frustrating is that they might not be causing the troubles…CFS is just so complicated, and dealing with it on one's own makes it that much harder.
But this month has been a rollercoaster from hell. I wish I could say otherwise, but can't. Severe mood swings, cramping, extreme muscle twitching, fat intolerance, extreme fatigue in my lower legs and feet, icy cold feet, joint problems, etc.. On some rare days I'd be "okay", only to crash the next day big time…some days I felt I would just completely lose it…but I'm still here I guess.
The wintery weather didn't help at all — temps in the teens with blizzard conditions a week ago left me housebound for five days. Not that I could've gotten out sooner, but who knows. I did finally take a cab to the grocery store 2 days ago, and did 'okay' for the 1/2 hour I was on my feet, but I guess two days of 'activity' were too much, as I went out yesterday for a long overdue haircut, and another stop at the grocery store, and was up for 3 hours last night, unable to sleep despite medication, because I developed incredibly uncomfortable twitching and RLS-symptoms in my legs.
What's even more frustrating is the fact that I had many if not all of these symptoms when I was at my worst TEN years ago. Many of these went away for years, so I'm of course hoping they will again, and am working as hard as I can to figure out what was helping back then, and what wasn't…but to go through all of this again, when I'm so much weaker, is so disheartening, so depressing, and so extremely stressful…I'm just (barely) taking it a day at a time.
Sorry to vent. If you can help, I would be very, very grateful. I'm especially grateful to everyone who has helped me during this rough time.
The Turning Point?
Thanks to the contributions of three amazing donors late last month, I was able to get in to see the CFS specialist on October 12th, and it was a very productive appointment. The doc is fantastic – extremely knowledgeable and compassionate. The appointment went almost an hour over the scheduled time, but there was no added charge at the end, something almost unheard of these days.
The Test Results The Methylation Pathways Panel (which evaluates the status of the methylation cycle, the folate metabolism, and glutathione) showed that I do indeed have a 'partial methylation cycle block' mentioned in the last couple of updates, something that Dr. Richard Van Konynenburg PhD told me they're finding in 'almost all' CFS patients tested so far.
So what is methylation?
Methylation is a biochemical process that takes place in every cell of the body. It is essential to life. Methylation is involved in hundreds of chemical reactions that regulate cellular energy, healing, immunity and genetic expression of DNA and RNA.
What happens when the methylation cycle is partially blocked?
Two of the most significant effects of a methylation cycle block are that neither the immune system nor the detoxification system can operate properly.
If the methylation cycle remains blocked for an extended period of time, infections and toxins can be expected to build up in the body. Glutathione (the master antioxidant) levels become depleted, and the patient becomes unable to utilize the biochemically active forms of critical nutrients (mainly folate and b12) that help everyone transform food into ENERGY.
My test results for "Folic Acid Derivatives" showed that while my folic acid level was in the mid-range of normal, the five different biochemically active forms of folate were all either depleted below the normal ranges or were right near the bottom of the normal reference ranges.
In other words, despite the fact that I had been taking a folic acid/b12 supplement for years, the vast majority of the folic acid was not being converted to active, usable forms of folate. Folate and vitamin b12 are critically essential to human health. If one cannot utilize these basic nutrients, then, well…health ceases to exist.
Folate deficiency can result in these symptoms, most of which I have:
WEAKNESS (Hello!)
ANXIETY and/or DEPRESSION
and SUPPRESSION OF THE IMMUNE SYSTEM
Researchers from Switzerland published a study in the Annals of Nutrition and Metabolism 2007 entitled "Contribution of Selected Vitamins and Trace Elements to Immune Function", which concluded that "micronutrient deficiency (including folate and b12) suppresses immune functions by affecting the innate T-cell-mediated immune response and adaptive antibody response, and leads to dysregulation of the balanced host response. This increases the susceptibility to infections, with increased morbidity and mortality."
You can check out the abstract here.
Together with the Methylation Panel, the NutrEval Test (more on that below) showed that I have a 'functional deficiency of vitamin B12, and that "not enough is being converted to either adenosylcobalamin or to methylcobalamin", two very important forms of b12.
B12 Deficiency symptoms include: fatigue, weakness, constipation, loss of appetite, difficulty maintaining balance, depression, confusion, dementia, poor memory, and soreness of the mouth or tongue, and weight loss. Neurological changes, such as numbness and tingling in the hands and feet, can also occur. The neurological symptoms of vitamin B12 deficiency can occur without anemia. I have almost every one of these symptoms.
The following is Dr. Sarah Myhill's summaryof the Glutathione Depletion-Methylation Cycle Block Hypothesis for CFS:
1. The person inherits a genetic predisposition (polymorphisms in several of certain genes) toward developing CFS. (This genetic factor is more important for the sporadic cases than for the cluster cases of CFS.)
2. The person then experiences some combination of a variety of possible stressors (physical, chemical, biological, psychological/emotional) that place demands on glutathione, the body's 'master' antioxidant.
3. Glutathione levels drop, producing oxidative stress, removing protection from B12, allowing toxins to accumulate, and causing the immune system to become dysfunctional (Th2 dominated).
4. Toxins react with B12, lowering the rate of formation of methylcobalamin. Lack of sufficient methylcobalamin inhibits methionine synthase, placing a partial block in the methylation cycle.
5. Sulfur metabolites drain through the transsulfuration pathway excessively, pass through sulfoxidation, and are excreted.
6. A vicious circle is established between the methylation cycle block and glutathione depletion, and the disorder becomes chronic. More detailed information is available here.
THE GOOD NEWS is that this methylation cycle block can be lifted by using precise amounts of the various biochemically active forms of folate and vitamin b12 (along with other nutrient co-factors).
So my doc prescribed three different bioactive forms of folate, along with 2 different forms of vitamin b12, to help bypass and eventually 'lift' this partial methylation cycle block.
She emphasized that it's very important to start slowly, with small amounts of some of these supplements: For example, I'm to start out with only ¼ of one tablet of one of the folate supplements "Actifolate", to help minimize or prevent any sort of exacerbation of symptoms caused by an activation of the immune system or a release of stored toxins from the liver as a result of the methylation cycle being restarted. So it could take months before I start feeling better.
If I find that I just cannot tolerate this protocol, then that would suggest that I may have some sort of genetic polymorphism which would require a different test. But so far, after about 10 days, I'm not noticing any dramatic worsening. Been sick for so long, and had so many 'up' and definitely 'down' days, it's difficult to tell.
The NutrEval test not only confirmed the methylation problems, but also showed that I have continuing problems with 'bacterial dysbiosis and malabsorption'. The analysis of the results is very technical (and over 11 pages long), but I'll copy and paste just a couple of paragraphs of the analysis that might be easiest for all to understand:
"While the level of alpha ketoglutaric acid is normal, it is notable that succinic acid is low, and malic acid is below the detection limit. This suggests that branched-chain amino acids are not being fed into the Krebs cycle at normal rates. This is consistent with their high levels in the urine. With the low levels of the early metabolites in the Krebs (energy) cycle as well, which indicate that carbohydrates and fats are not being burned for fuel at normal rates, it appears that all three of the main fuels for the Krebs cycle are being burned at low rates.
I think it's clear from the above that your mitochondria are not functioning well, so that your body is not able to use the biochemical energy from your foods to produce ATP (cellular energy) and operate its biochemical reactions as effectively as normal. The treatment to lift the methylation cycle block and to raise glutathione should improve the function of the mitochondria."
The doc noticed (as I have) how I had lost muscle, even in my hands and feet, so again, hopefully this methylation protocol will eventually correct this inability to metabolize and utilize carbs and fats for fuel, instead of using my own muscles.
Anyway, while I'm still doing very poorly, I'm encouraged by these new test results – as they clearly show problems that have never been found or addressed before, and this protocol has helped many others improve their health. It certainly may not be THE answer to my CFS, but it most probably is a key component — after all, as mentioned above, folate and B12 are essential to health, but because of the 'block', I'm currently unable to metabolize sufficient amounts of either nutrient. If I can change that, common sense would suggest I will do better.
And I am very, very grateful again to the amazing people who made this possible. There is even enough in the Trust fund so that I'll be able to see her for a follow-up on November 9th – something so very critical to recovering.
The Trust balance will again be near zero after the 9th, so any help, any donations of any size, are always deeply appreciated.
For more information, please see the "How You Can Help" page.
(It seems like I'm only able to update this every 5-6 weeks or so…but hopefully that will improve as I improve. Please leave a comment if you have any questions or concerns. Thanks for your time.)
9/16/2010 Quick Update:
The Good and the Bad…
The good news: The Methylation Panel and NutrEval (20 pages) test results are back, and currently being interpreted/analyzed by one of the leading researchers in the country, which he will then send on to my doctor. I am so very grateful for his help with this. I hope to be able to post an update in the next week or two regarding the results, although I may have to wait until I can get an appointment w/my doctor to get the full interpretation. I saw the NutrEval results, and they were way over my head…almost impossible (especially with my brain fog) to decipher.
Then, the bad: In the meantime, the Trust account balance has fallen to only $72.41, so I've run out of the prescription strength high-dose VSL3 probiotics, am almost out of the digestive enzymes, the immune-modulating beta-glucan, and other nutritional supplements* prescribed by my CFS specialist, and as a result, I am paying the price again with worsening health — increased neuropathy, pain and stiffness, extreme weakness, neurological problems, muscle spasms in my lower back and legs, and problems digesting, metabolizing and tolerating many foods, resulting in once again, weight (muscle) loss, bone loss in my neck, and even skin cell breakdown. (My skin just peels off in the shower.) I'm basically disintegrating because I cannot digest and process the food I eat. Feels like I'm dying…
To get a better understanding of how important gut function, digestion and nutrition is to a patient with CFS, I'll quote Julia Rachel's comment that she posted at the bottom of the "Critical Tests" page. Her son lost over 50lbs at one point during his battle w/this illness (down to 130 lbs at 6′ 2″), and according to information on her blog, was about to enter hospice care.
Here's part of her comment: "I agree emphatically with your vebiage on diet, metabolic issues, gut issues and the extreme importance of the nutrional assay testing. We use Spectracell Nutritional Assay testing and if it were not for the plethora of vitamins and minerals and essential nutrients in Blake's nutritional regime that are prescribed and compounded precisely/specifically to what he is lacking/deficiencies, he would not be recovering as well as he is. Still, his weight loss is astounding and the weight gain is not bouncing back when he is mobile. Just walking daily causes him to lose weight, whereas when he is prone, he will gain more weight."
In addition to the nutritional supplements, he and his mother are also on antivirals for HHV-6 and EBV infections, and as she writes on her blog: "He has regained the ability to attend college successfully part-time and manages small daily chores. Twenty months ago, Blake was completely bedridden. He has gained 20+ lbs, yet has another 25 lbs to gain. Cognitively, vast improvements have been made and he no longer experiences the Orthostatic Intolerance 90% of the time and his heart condition is improving."
A tragic, but truly inspiring story. I'm so grateful to Julia for her comments and for sharing their heroic stories on her blog: http://vlgonvalcyte.wordpress.com/
You can help me turn this around — help save my life — by making a donation to the Daniel J. Becks Special Needs Trust at any Bank of America Branch (account # 35137298*), or by clicking on the Paypal "Donate" button.
*If making a donation at a Bank of America branch, please bring the account number with you. For some bizarre reason, Trust accounts are not searchable in the same fashion as regular bank accounts (at least at BofA), and we've had 2 or 3 reports of people trying to make a donation, only to be told that no account exists. Of course it does, but because the name of the account is so long, apparently this is causing problems. So bringing the account number (35137298) with you will eliminate any problems.
*These four supplements alone cost approximately $220/month. For more details, check out the "How you can help" page. THANK YOU! 8/3/2010 Update
I'm a fortunate man. A dear, sweet, friend saw that I was having trouble raising funds, and generously offered to pay for both the NutrEval and Methylation Pathways Panel tests — two critically important diagnostic tests that will help identify the metabolic problems that leading experts consider are essential to addressing the root issues of CFS/ME (and other confounding and complicated chronic illnesses like autism, MCS, etc.). More info on these important tests can be found below, on my previous post, and on the Critical Tests page.
Anyway, I'm so very, very grateful for this extremely generous donation. I stayed off all probiotics, supplements, and digestive enzymes for six days, (with a couple exceptions during the first few days) and then fasted for the big blood draw yesterday morning. I say 'big', because it totaled eight vials. I suppose that's not really that much for most people, but a majority of CFS/ME patients have low blood volume to start with (we typically have about a liter less blood than the average Joe)…plus, with my borderline anemia (that started last year) I often feel like I don't have any blood to give.
The blood draw went smoother than expected (especially after hearing horror stories online and calling five labs before I could find one that assured me they were familiar with the tests). It's a very complicated blood draw, that requires each tube be handled a different way, and has to be completed in 30 minutes before being frozen for at least 2 hours before shipping via Fedex. I'm paying the price today with increased migratory pain, incredibly icy cold feet (I told you I was bloodless!) and even worse coma-like "fatigue". It may possibly last for the next week or even a month or so, but it's a price that will be well worth it in the long run. I'm confident these tests will give me a lot of much needed answers and help finally point me onto the road of consistent and eventually lasting recovery. As I said on the main page, I know at least a half dozen people who have recovered, I've read of at least a half dozen more, and that tells me that it is possible.
I also want to thank my family for taking turns to come down to help me with errands, with the cleaning that I haven't been able to do much of, and just being able to visit with them a little more often. I really appreciate all their help lately…parts of my apartment are so clean they're almost unrecognizable. 🙂
Yes, indeed…I'm a fortunate man.
7/12/2010 Update Thanks to two donations, the Trust was able to purchase a new month's supply of probiotics, digestive enzymes, and other prescribed supplements that I had either run out of or was taking far less than the prescribed dosages in order to get by. I am extremely grateful for the two donations — the Trust balance is now at $194.17. (See the 4.14.2010 update below for some examples of what these prescriptions/supplements have been prescribed for and how much they cost.)
The Current Goal is to raise funds to help pay for the comprehensive NutrEval Panel (which consists of over 200 tests) and also the Methylation Panel listed on the Critical Tests page. The NutrEval Panel is the biggie — the most comprehensive evaluation available to help overcome chronic disease and promote optimal health. The profile consists of Metabolic Analysis, Amino Acid, Essential and Metabolic Fatty Acids, Oxidative Stress, Nutrient & Toxic Elements and FACTest™. More detailed information about this important test panel is available on the "Critical Tests" page. It is also the most expensive ($1,060), but fortunately is so all-encompassing and comprehensive that it negates the need for several of the other tests previously listed on the blog.
The Methylation Pathways Panel reveals the status of the methylation cycle, as well as the condition of the folate metabolism and the status of glutathione. Problems in all three are linked together in CFS, and the panel detects these problems so that appropriate treatment can be given to restore proper methylation function. This test costs $330. Along with these tests, I'll naturally need to consult and evaluate them with the help of my doctor, and hope to raise enough funds to pay for the appt with her, as early as August 25th. Her fee is $180 per hour, as described below. I know I can recover — I know it — as I know others who have, even after being sick for 16-17 years. I just need your help… I thank you for taking the time out of your day to read these updates and for listening to my story. 6/10/2010 Update
Your Help Is Urgently Needed: After purchasing the prescribed high-dose probiotics, anti-microbials, immune modulators and nutritional supplements, the current balance in the Trust Account is down to only $17.89.
Just as with any serious disease, treatment and medicines are often expensive, and many of the items prescribed by my doctor are no exception. Unfortunately they are not covered by my insurance, so your help is most urgently needed.
Donations to the Daniel J. Becks Special Needs Trust (account # 35137298) can be made at any Bank of America branch, or by clicking on the PayPal "Donate" button on the left-hand side of this blog. I personally have no access to these funds — they are paid out by a trustee solely for medical costs not covered by insurance. They cannot be used for any other purpose. For more information please check out the "How You Can Help" page. Thank you.
After a couple of 'better' days this week, I'm struggling to hold onto the hope and positive outlook that has kept me from doing something stupid.
The pressure and stress of not being able to afford ongoing proper treatment, along with the isolation this #*@!! disabling illness creates is overwhelming, to say the least. I did hear back from the doc earlier this week with clarification on dosages regarding the prescribed antimicrobials and other supportive supplements (see the 4/14 update below for a list of some of them).
In just three weeks, I'm almost out of the Beta-glucan (immune system modulator) that she prescribed a little more than three weeks ago, and that's even with skipping evening doses on quite a few days. I hate to sound like a broken record, but I can't do this by myself. I need your help, and your friend's help, and anyone you can think of who might be able to make a donation, no matter the size. Please click on the How You Can Help link for more information. Thank you.
*Dr. Nancy Klimas M.D., who has treated more than 2000 patients, said there is evidence that patients with CFS experience a level of disability that is equal to patients with late-stage AIDS, patients undergoing chemotherapy and patients with multiple sclerosis. Update 5/9/2010
Very quick update for now: Had a very productive docs appt last week — the Metametrix GI Profile came back positive for a parasite, plus mycoplasma and streptomyces infections. These three infections are, according to the test results 'associated with increased caloric extraction from food'. In other words, they're interfering with proper digestion and absorption of nutrients, which may very well help explain my inability to gain weight, the borderline anemia, the muscle loss, joint problems…and especially my inability to extract any ENERGY from the food I eat.
The mycoplasma infection is especially difficult to treat (and has also been associated with Gulf War Syndrome), but still possible. I'm fading fast now, so will try to add more info as soon as I'm able to. I'm also waiting for an email followup from the doctor. Thanks so much to all who have helped me.
Update 4/14/2010
YOUR HELP IS URGENTLY NEEDED. After my recent doctor visit and tests that were ordered, the balance in the Daniel J. Becks Special Needs Trust is running very low and very soon I'll be unable to continue treatments, afford prescriptions or other prescribed supplements, and won't be able to see the doctor for the critical followup appointment scheduled for early May, as none of these are covered by my insurance.
While some days I can walk to the grocery store, there have recently been some days when I can barely make it to the kitchen…my hips, knees and legs are so weak from muscle loss. The stress level is incredible…a vicious cycle.
You can make the difference! Your continued support insures that proper treatment and care will continue, and that previous donations won't have been wasted because due to a lack of proper followup care.
Here are some examples of how your donation can help:
$22.15 buys one bottle of Thorne Betaine HCL (improves protein digestion)
$35.50 buys one container of BioChem Undernatured Whey Protein (helps raise glutathione levels)
$47.95 will pay for VSL#3 High Potency Probiotics (helps improve intestinal dysbiosis)
$60 pays for the Kryptopyrrole Pyroluria Urine Test $62.95 + tax will buy enough Beta Glucan for one month — an immune system modulator prescribed for the mycoplasma and streptomyces infections.
$90 pays for 1/2 hour with the CFS Specialist $330 will pay for the Methylation Panel (see Critical Tests page for more info), or $33 will pay for 1/10th of the cost.
These are of course just suggestions — ANY AMOUNT is welcomed and greatly appreciated. Please consider making any donation you feel comfortable with.
Special Thank You Gifts are also available. For more information, please see the "How You Can Help" page.
And a special request from friends in the area: I could really use help doing errands or getting to doctor's appointments. I need to stay off my feet and rest as much as possible, as I've been doing exactly the opposite lately, and paying the price.
With your help, I'm confident I can recover, as others have, and help inspire others to know that Recovery IS Possible. Thank you for your time and consideration. Update 3/14/2010
Parasites + Pyrolurria = Possible Progress?
The appointment with the CFS specialist on 2/23 was productive, and I am so grateful for the experience, knowledge and compassion of the doctor. She went almost an hour over my allotted time, but billed for only the first hour. Unheard of these days.
She also recommended two tests that may help explain a great deal of my worsening condition, my past and recent symptoms, the results of which will help direct us towards which established, proven treatments we should utilize that will finally begin to help turn this 12 year nightmare around.
Although I was completely wiped out for the following 2 days, the appt went very well. Based on my patient history and preliminary clinical testing, doc concurred that a chronic, unresolved parasite infection(s) may be playing a large part in my CFS, and especially the severe 'crash' of the last 3 months (see details in the last update). She recommended ordering the Metametrix GI Effects Profile (instead of the CDSA w/Ova & Parasites), because it uses new DNA analysis, which is far more sensitive and accurate than standard testing. DNA analysis can identify microbiota with 100% accuracy — including anaerobes, a previously immeasurable area of the gut environment. In addition to much more comprehensive bacteriology, mycology, and parasitology, the test also shows drug resistance genes, antibiotic and botanical sensitivities, gliadin-specific sIgA, Elastase1, plus other inflammation, digestion, and absorption markers.
So this test should be very helpful in not only finding parasites and other pathogens, but also showing what's right and wrong with my overall intestinal function, and could very well explain why I'm not digesting and absorbing nutrients well at all, and haven't been for the last 12 years. Who knows…I just may actually start gaining weight…muscle…and actually keep it on, even at my age! (Unfortunately, the test didn't reveal the TYPE of parasites that were found…very disappointing in hindsight.)
She also ordered the KPU/Pyrroluria test, which Dr. Dietrich Klinghardt M.D. has found very helpful for many of his patients with chronic illness.
Pyrroluria is a genetic chemical imbalance involving an abnormality in hemoglobin synthesis. Hemoglobin is the protein that holds iron in the red blood cell. Individuals with this disorder produce too much of a byproduct of hemoglobin synthesis called "kryptopyrrole" (KP) or "hemepyrrole." Kryptopyrrole has no known function in the body and is excreted in urine. This excess kryptopyrrole then binds to vitamin B6 and zinc and makes them unavailable for their important roles as co-factors in enzymes and metabolism. These essential nutrients when bound to kryptopyrrole are removed from the bloodstream and excreted into the urine as pyrroles.
Zinc and B6 are nutrients critical for the functioning of the entire body and mind — including digestion, blood formation, a healthy immune system, and cognitive functioning. They are also important cofactors for over 300 enzymes in the methylation cycle and related pathways, so that if they become depleted, even though a person treats with B12 and folate to lift the methylation cycle block, the methylation cycle can still remain blocked. (The Methylation Panel is another test we hope to run in the next few months.)
The unique and often unusual symptoms of pyrroluria include many I can certainly relate to: low white blood cell count, poor dream recall, poor breakfast appetite, long term anxiety with an emphasis on 'inner tension', sensitivity to sound and light, pessimism (despite my cheery demeanor!), cold feet, joint pains, and hypchlorhydia (low stomach acid, a condition I've had for at least 15 years, also common in other patients with CFS).
So, both these tests could be very, very helpful in explaining many of my symptoms, both past and present, and thus could lead to improvement and possibly even resolution of these symptoms. Doc also recommended high-dose (extremely high-dose) probiotics — along with various nutritional and digestive supplements to help repair and support my poor digestive function, plus also prescribed an antiparasitical drug to be taken after the parasite/GI Panel is run. (Never did run the pyroluria test however, as we ran out of funds…) 2 Days later…my FIRST DENTAL VISIT in FIVE YEARS
I was also very fortunate to be able to see a dentist for the first time in five years, about 2 weeks ago. Not just any dentist, but an old friend from my old neighborhood, who I've known since I was probably 8 years old. He graciously offered a free dental exam complete with digital x-rays, along with his suggestions for treatment. My gums and the pockets around my teeth were in better shape than both he or I thought they would be, but my poor teeth need will a LOT of work. For now, I'll be going in for a long, long overdue cleaning this coming Tuesday. I dread it only because my body heals so poorly, especially lately, but in the long run it can only help, and is another step in the right direction. I'm deeply grateful to my dentist friend for helping me get this work started. 2/19/2010
I can't believe it's been over a month since my last 'update'. I'm not ashamed to admit it's been a very scary 2 1/2 months or so. There have been many days where I thought for sure I wouldn't make it to the next day…very scary and frustrating, especially when one is all alone. My eyes have been microscopically stronger the past 3 days, but prior to that I was virtually unable to be online for longer than 20-30 minutes per day without my eyes just giving out*. They were/are not only incredibly weak, but also extremely sensitive to light, much more so than usual.
On top of that my brain fog was so severe (and still is) that I could hardly concentrate long enough to write out a coherent update. Many other symptoms continue to worsen (I could list them if you like)…but suffice to say I just cannot get better without your help. I had planned on updating this so many times, only to be wiped out after simply replying to an email or two…my 30 minutes would be up. As stated in the last update…it has been the worst 'crash' ever…like walking death. *2/19/10: It took me five days (with long breaks in between) to write this…the eye 'improvement' noted above didn't last.
I have an appointment scheduled for Tuesday, February 23, with a highly regarded local CFS and chronic disease specialist to assess this urgent situation and help prioritize the lab tests listed on the "Critical Tests" page. We hope to be able to do the CDSA + Ova & Parasite test as soon as possible, as that could very well help explain the severe 'crash' I've experienced over the past 2 ½ months, not to mention the gradual worsening over the last year or so. I've tested positive for parasites twice in the past, so I could've picked up a new infection (very possible considering the immune dysfunction of CFS/ME) and/or never completely rid myself of the insidious buggers, since they have many life cycles (eggs, larvae, etc?) and can be difficult to detect without very thorough and repeated testing. I was last checked in 2007.
Please note that the Fundraising Total has been updated to deduct funds used during the 2009 calendar year; $440 (including 1 doctor visit, the heavy metal consult, 3 physical therapy sessions), $96 for the heavy metal analysis test, and $418.01 for 12 months of supplements, high-dose probiotics, and digestive enzymes. The Fundraising Total Goal has also been adjusted to reflect these expenditures.
As always, I am so very grateful for your generous contributions. The balance in the Trust Account as of February 14, 2010 is currently $371.25. This will help pay for the doctor visit on the 23rd, and the CDSA +Ova and Parasites test, but after that there will be little leftover to cover the tests and treatment protocols the doctor feels are necessary going forward.
So once again, I'm asking for your help. I cannot do this without you. Your ongoing support will help ensure not only that the proper tests are run, but also that follow-up doctor visits will be possible so that your donations are not wasted on the tests. For example, in 2007, before this Trust was set up, I was able to get the CDSA test. A fungal infection and pseudomonas infection was found, but I could only treat it for a month (with prescribed high-dose human strain probiotics) because I couldn't afford them any longer, nor could I return to the doctor to see if the infections had cleared. It would be a shame and a waste of your donations, if this were to happen again.
Donations to the Daniel J. Becks Special Needs Trust* can be made at any Bank of America Branch, or by clicking on the PayPal "Donate" button on the right hand side of this blog. For more information please click on the "How You Can Help" link at the top of the page.
My deepest thanks in advance. *Please note: Bank of America must have the exact name of the Trust in order to locate the account number and accept your donation. My eyes are totally shot for now. Back to bed… 1/18/10. My apologies…
I have wanted to give you all an update for weeks, but am still having difficulty staying online for more than 15-30 minutes or so, and it usually takes me an hour or more to post an update. But I am doing microscopically better in just the past four or five days, so am hoping that 'uptrend' will continue, and I will be able to post an update within the next week or so. If anyone has any questions, please leave a comment at the bottom of any page and I will try to get back to you as soon as possible.
12/29/09. WORST. CRASH. EVER. For the last 2-3 weeks I've felt like I'm dying.
Like others with CFS, I've felt that way many times before, but never to such an extreme, and never for so long. The "push-crash" cycle is very common with this illness. If we push ourselves just a little too much past our 'energy' envelope, we tend to pay for it big time, by "crashing" with extreme fatigue, in some cases ending up in bed for days, weeks, even years. I've been fortunate in that in the past, my crashes generally have tended to last a day or two, then I have been able to regain a microscopic amount of "energy", maybe a total of 2-3 hours, enough to make it through the next day. But not this time. And I'm not sure why…
Good friends took me out for lunch on November 29th (my birthday) and then the next day, I joined my family at my sister Laurie's, for a birthday dinner. As always, it was great to see everyone, and so nice of them to help me celebrate my birthday, but as in the past, at any get together, I was struggling to keep myself propped up and trying to be as positive as possible.
I came home from the dinner extremely exhausted, but in hindsight, no more than usual. At least not to my recollection. But then about 2 days later, I could hardly keep my eyes open. They became so dry, and so weak, I could not look at the computer for more than 5-10 minutes at the most. I could barely read, let alone comprehend what I was reading. But it wasn't just dry, tired eyes. My sinuses dried out, my 'brain fog' (concentration) got worse and worse, I became light-headed at times, and could not talk for more than a few minutes on the phone… And I still have no clear idea why this crash has been so severe and that's very scary.
My eyes have been slightly better the for a day or so, then worse, then a little better, so naturally I'm hoping the improvement will continue. But the extreme fatigue, the memory problems and overall weakness are still just as bad, and in the hour it's taken me to write this, I'm fading very fast.
I need your help. You have the power. If you can give $5, $10, $20 a month – no amount is too small – your donation, along with others, will help pay for these specialized tests, and most importantly, get the follow-up care needed to stay with a treatment protocol that will lead to improvement, and eventually recovery.
Donations to the Daniel J. Becks Special Needs Trust can be made at any Bank of America branch, or by clicking on the PayPal "Donate Now" button. For more information on the tests, please click here. For more info on how you can help, please click here. THANK YOU.
Update 11/26/09 On this Thanksgiving Day…
I'm overdue in expressing my deepest thanks and appreciation to all who have taken the time to read my blog, and to those who have helped with their friendship, love, support and generous contributions to the Special Needs Trust over the past seven months. I am truly fortunate and so very grateful. Thanks to your donations, I was able to get tested for heavy metal toxicity (after elevated levels of arsenic were found in an initial blood test) and begin a chelation protocol under the guidance of a specialist that helps to slowly remove the arsenic and mercury as safely as possible. I feel a a little better after each 3-day round of chelation, but have many more rounds to go. It's been about 2 weeks since my last round so I need to get back to it ASAP. Anyway, I never would've been able to consult with the specialist without your help.
I was also able to get some much needed physical therapy that has helped strengthen my lower back, hips and knees, weakened by the muscle I've lost as a result of both intestinal malabsorption issues and the disease itself. The catch-22 is finding the 'energy' to do these physical therapy on a consistent basis, as most often what little energy I have is rapidly used up by going to the grocery store, or even more mundane tasks like cooking a meal and cleaning up afterwards.
I'm so very grateful to my sister Laurie for helping me do my laundry every couple of weeks. Yo LAURIE!
Your support also helped purchase pharmaceutical-grade probiotics, digestive enzymes, and also vitamin, mineral and protein supplements recommended by my doctor, but not covered by insurance. As a result, I've gained 9 much needed pounds over the past 7 months…after being stuck at 153-155 for almost 8 years. I hope to be able to update the blog more frequently.
This summer I found out I'd have to move by August, so I became very preoccupied and overwhelmed not only with trying to find a new place, but also preparing for a move, a process made more frustrating when I got notice that the low-income Section 8 program was cancelled on August 7th, just days before I was scheduled to be approved. (My lease has kindly been extended until January 31st, and possibly longer, but will probably have to move by March 1st, 2010.) Also, my "brain fog" has been worse at times…a common but extremely disturbing Alzheimer's-like symptom very evident to family and friends during the last year.
Some of the supplements like acetyl l-carnitine and special forms of b-12 have started to help, and it's heartening to know that even though it can sometimes last for months or years, it typically resolves as one recovers. Nevertheless, I'll try to post more often in the future. In the meantime, if anyone has any questions, please post them in the comment link at the bottom of any page, and I'll do my best to reply to you as soon as possible. I hope you all had a wonderful, relaxing Thanksgiving holiday! Update 10/30/09
The XMRV retrovirus studies have been all over the news. Here's a balanced article on the findings, and what it has meant to patients, from ABC News. Also, the 2-day CFS Advisory Committee (CFSAC) Meetings at the Centers for Disease Control are just concluding today. I haven't been able to watch much of it at all, but have seen clips on Youtube, with some heartbreaking testimony from patients ill for decades, and some inspiring speeches from doctors like Dr. Daniel Peterson M.D., who's dedicated the last 25+ years of his life to working with CFS patients. He was also one of the co-authors of the initial groundbreaking XMRV study published just three weeks ago. A search on Youtube using the terms "CFSAC" and possibly "Oct 29-30" should turn up lots of videos for those interested. Thanks for reading this update. Video Interview with Dr. Nancy Klimas M.D.
Dr. Klimas, one of the hardest working, most dedicated doctors and researchers in the CFS community, gives her opinions and advice regarding the recent announcement of a possible retroviral link to CFS. http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv
Update 10/10/09 MAJOR NEWS: RETROVIRUS LINKED TO CHRONIC FATIGUE SYNDROME Some of you may have read or heard the news reports about a study published in the Journal Science that found a retrovirus in 67% of CFS patients and only 4% of healthy controls. As a patient, for me the news was both exciting and scary, and brought up many, many questions. The retrovirus has also been found in approximately 27% of patients with an aggressive form of prostate cancer.
Here's a link to one of the most accurate reports on the study's findings: http://www.bioedonline.org/news/news.cfm?art=5704
What was really eye-opening was the announcement that when the lead research team later analyzed blood cells in about 330 CFS patients, they found that more than 95% expressed antibodies to the retrovirus, compared to about 4% of healthy controls. This is very interesting because finding "antibodies" to the virus is different from finding active infections from the virus. It suggests the body was exposed to the pathogen at one point, but the infection was perhaps brought under control by the immune system and is no longer currently active. It may however have done it's damage, but that doesn't mean the damage cannot be fixed. Other retroviruses, such as HIV and HTLV-1, are known to cause cancer and immune deficiencies in humans. This study showed XMRV can be found in human blood cells and is infectious. Researchers have confirmed that this retrovirus is transmitted through body fluids and is not airborne.
Naturally, with this kind of major news announcement, there has been a lot of controversy and arguments about whether it's the SOLE cause for a syndrome with so many different symptoms. It certainly could be a 'significant contributing factor' as described by lead researcher Judy Mikovits.
BUT IS IT THE ONLY CAUSE, OR THE ONLY FACTOR? Dr. Daniel Peterson M.D., one of the country's leading CFS specialists has been quoted saying: "I think it's required probably to be a genetic predisposition like there are for most diseases. And then there has to be the infectious agent and then a combination of host factors, probably immune factors, et cetera, that propagate the disease."
And what are things we can do now? Dr. Paul Cheney, considered by many to be the leading CFS specialist made these recommendations, suggesting that other factors are involved: "Factors that are highly oxidizing (which help the retrovirus and other infections spread) include diets high in meats, sugars, fructose, processed foods, allergic foods, fish oil in the special case of CFS, environmental exposures and especially mercury or dirty amalgam extractions or cracked amalgams and immune activators such as vaccinations and echinacea, mold, stress or chaos in your life, heavy exercise, excessive heat or cold and EMF (electromagnetic fields from cell phones, etc.).
Factors that are reducing and therefore protective include fresh vegetables (not overcooked and preferably raw) and especially freshly juiced green drinks, olive oil, low stress, clean environments, low EMF exposure (aka avoiding cell phones and unshielded house currents), and avoiding drugs that induce P450. Probably the worst thing is severe stress or life chaos combined with a bad diet and mercury exposure."
It's also been suggested that correcting this potential methylation problem (see "Critical Tests" page) may help improve patients ability to deal with the XMRV retrovirus. Finally, I think it's important to note again, that I personally know people who have recovered from severe CFS/ME, including one who was bedridden for 2 years, housebound for 7 years, but is finally well and back at school, getting top grades and with energy to spare. Even though I lose hope at times, I keep telling myself, because I've met and known people who are now well, that with your help, RECOVERY IS STILL POSSIBLE. Update 10/06/09:
MY HERO Laurel is an online friend I met on Cort Johnson's highly regarded CFS/ME blog and forums. I read her posts which always feature a smiling picture of her in the upper corner…her 'signature' photograph. But it wasn't until I saw the video she posted on Youtube, that I realized how severely ill she is, and at the same time, how incredibly courageous she is, and what deep inner strength she must have. She is my hero, and I am humbled to know her, even if it's only online. I feel so foolish complaining about losing my hair (below), and realize how fortunate I am in that I can still leave my house at least 3 or 4 times a week, and I can stand up, get out of bed, albeit very slowly and great weakness, but without assistance. Yes, some days are extremely difficult, and I just want to give up…but then I remember Laurel, and tell myself, if she can face another day, then I certainly can too. She is an inspiration. Please take 5 minutes to hear her story.
Thank you. Update 9/01/09:
Or seriously, not so fun. Yes, a touch of male pattern baldness runs in the family, but these pictures show how the arsenic poisoning and possibly the borderline anemia/low iron has contributed to the sudden, dramatic increase in hair loss I experienced both last fall, for 2 months, and then again the past four months. I include low iron here not just because of the association proven in clinical studies, but because my hair loss lessened as my blood tests (for hemoglobin and hematocrit improved last January), but then increased dramatically again when levels fell in May, which was when the arsenic levels rose. Also, other heavy metals such as mercury (see below) can interfere with iron metabolism. Anyway, here's a pic taken just one year ago: And two taken just last week… Hopefully chelation will help turn this around, If not, then the next time you see me I'll probably be wearing a cap. Overall however, this is pretty trivial. What's important of course will be if the oral chelation helps improve my CFS…only time will tell. In the meantime, more tests are needed, especially the hypercoagulation profile and the food allergy panel. Please click on the "Critical Tests" and "How You Can Help" links at the top of the page, for more information. Thank you for taking time out of your day to read this update! Update 8/21/09 I apologize for taking so long to update the blog — I can't believe more than a month has flown by.
There have been many times when I have wanted to write but have been plagued with an extra dose of 'brain fog', a sort of 'temporary alzheimer's' that is one of the main symptoms of CFS. Fortunately this resolves as one's overall health improves…but it's still incredibly frustrating and disabling. Right now I'm struggling for the right words, but I'll get through this…I can always correct my typos at a later date if necessary. 🙂
I also will have to move by September 30th, so I've been spending periods when I have more "energy" working on throwing out old files, getting rid of that ubiquitous "junk" we all accumulate, shredding paperwork, etc.. It's taking so long because I get so tired so quickly — have to really pace myself and that means usually a half hour in the afternoon and another half hour in the evening. Plus I haven't found a new place to live yet, so am still working on that…a very difficult task especially after I received notice on August 7th that the Section 8 (low income housing) Voucher program has been postponed for a year due to the poor economy.
It's been a rocky six weeks, but there are the beginnings of some improvements to report as well, and once again I am so grateful to all who have helped out by making a donation to the Daniel J. Becks Special Needs Trust. I would not have been able to see the specialists I have seen without the concern and compassion you have shown with your help.
The last half of July was quite the trial for almost everyone here in the Pacific Northwest, but especially so for those of us with serious health issues. We set an all time record for the both the longest heat-wave stretch and the hottest day ever — 103 degrees on July 29th, even hotter in some outlying areas, and even hotter in my apartment! I truly thought I would melt to death…and probably lost a few pounds during that 7-10 day period…pounds that I didn't need to lose. But I survived as did most…it just was really tough, and took a toll on my 'energy' for the next week or so.
Thanks to your donations, I had a two-hour appt with a CFS/heavy metals specialist on August 6th to review my test results regarding the arsenic and possible mercury toxicities. She also reviewed my other past and recent test results and took a thorough health history.
She confirmed that arsenic was definitely too high, and said that the test results showed that I had a greater than 90% possibility of a 'hidden' mercury problem, mainly because of fact that so many of my other minerals were so out of whack on the hair elements test (below).
According to researcher Andrew Culter PhD, a man who recovered from CFS by chelating mercury from his body, says that "a hair element analysis will show signs of long ago mercury exposure in that the essential elements (like calcium, potassium, etc.) will be wildly abnormal if the (person) is toxic. Mercury itself may not be elevated."
So, I'll be starting a trial of alpha lipoic acid, taken every three hours for 3 days and 2 nights, then stop for a week, and repeat the 3 day chelation cycle again, possibly for several weeks to several months, to see if this is beneficial in my case.
As noted below, many, if perhaps most people can detoxify mercury and other heavy metals and chemicals from their bodies with no problem…others, especially the chronically ill, for various reasons can not, so chelation is often prescribed. The Cutler method is regarded by many as the safest method of chelation.
Research by Ludwig, Voll, Omura and Klinghardt, showed that microorganisms tend to set up their housekeeping in those body compartments that have the highest pollution with toxic metals. The body's own immune cells are incapacitated in those areas whereas the microorganisms multiply and thrive in an undisturbed way.
The specialist also suggested I get the following blood tests: hormone levels (DHEA-S, testosterone, free testosterone, estradiol — because of the pituitary adenoma I had in 2005), uric acid, ferritin, 25-oh-d (vitamin d), homocysteine, quantitative IGE, plus thyroid tests (free t3, free t4, TSH), a CMP (Comprehensive Metabolic Profile), and a Food Allergy IGG Panel. Some of these are covered by my insurance, but some are not.
My regular doctor approved a blood draw which I did yesterday to check the homocysteine, ferritin and vitamin d levels, but will have to schedule a regular appt with her to discuss the other tests in more depth. I don't believe the CMP or Food Allergy Panels are covered, but will look into them as soon as I can.
My deepest thanks to all for reading this update, for your kindness, and for your donations that have made this all possible. I'll try to update this page a lot sooner next time.
Update: 7/11/09
An Essential Elements Hair Mineral Analysis was ordered by my doctor after earlier blood test results (see below) showed an elevated level of arsenic. While this test is not considered diagnostic in and of itself, clinical research indicates that hair levels of potentially toxic elements such as cadmium, mercury, lead and arsenic are highly correlated with pathological disorders in some patients.
As mentioned below many people are able to process and detoxify these heavy metals, but a minority cannot, in part due to possible methylation problems . It's kind of like how some people can drink coffee all day and sleep like a baby while one cup at noon will keep others awake until 3 in the morning.
Anyway, the test confirmed elevated tissue levels of arsenic, plus also showed that my essential mineral profile is extremely skewed, with copper and iron very low, among others, while rubidium (?) is high and potassium is off the chart. This 'scattered' pattern is suggestive of not only arsenic toxicity, but perhaps hidden mercury toxicity (according to Andrew Cutler PhD), and also may reflect adrenal insufficiency (very common with CFS). The adrenal glands are the "stress" glands, and help to regulate electrolytes like calcium, magnesium, sodium and potassium (which as you can see on the test, are all out of whack).
Current acute symptoms are about the same, although the neuropathy and muscle twitching subsides a little bit at times, and seems to move around (Note 2/2011: This is a clear sign of mercury problems that I just didn't understand at the time, darn it).
Hair is falling out at twice my usual rate — not fun — but if both are related to the arsenic issue, then treating that should help the symptoms subside. (The excessive hair loss could also be related to low iron.)
I've lost more weight again, which is very frustrating, as I had finally gained about 8-10 pounds last year, for the first time in years. I'm back down to about 152-154…not good for someone 6'2″. But weight loss is another symptom of heavy metal toxicity.
My doctor is suggesting a trial of an oral chelating agent called alpha lipoic acid, which is taken every 3 hours for 3 days on, three days off — it helps the body to 'pull' heavy metals from the body tissues and excrete them. She also would like to run the 24 hour Salivary Adrenal Hormone Profile (see the "Tests" page) to assess the status of my adrenal function, plus have my blood ceruloplasmin and homocysteine levels checked.
(Update: I'll be seeing a heavy metals specialist on Thursday August 6, to discuss my test results and possible chelation with ALA.)
Your donations are so vital to getting these tests and follow-up treatment — I couldn't do it without you and am so grateful for your help. Some new donations have come in recently so I will update the fundraising meter as soon as 'energy' permits.
Thank you again your support! And to others struggling with CFS; Please, please don't give up hope…Recovery Is Possible. Dan
Hello friends, I will try to update this as often as possible…certainly when there is news to report…good or bad. Unfortunately this first post isn't so good. BORDERLINE ANEMIA IS BACK…
One of the most frustrating aspects of CFS is how one day you can feel "better", or even for a few weeks you might feel like you're on an upswing, and then suddenly the next day you're worse — sometimes much, much worse — again. A year ago it was discovered that I was borderline anemic. My hemoglobin and hematocrit levels were about one point lower than the cutoff for anemia, and several points from the mid-range of 'normal'.
I was encouraged in January when bloodwork showed that both had increased slightly into the 'normal' range, albeit very close to the bottom. My chronically low white blood cell count had also increased by 30% — the first time that had happened in many years. Things were looking up, a very pleasant surprise.
I had a CBC last week (5/24/09) and my levels have dropped again, and the hematocrit is back in the 'anemic' range for males. Very frustrating and depressing. Hair is falling out at higher rates again like it did last summer, one of the many symptoms of anemia, but most importantly, it has made my fatigue a lot more severe.
More bad news: NEUROPATHY RETURNS (Tingling, numbness, twitching in my feet and lower legs)
Imagine the feeling of bugs crawling on your feet, and the strange feeling as if each toe was wearing it's own sock! Although I've had the muscle twitching off and on for years, the disturbing numbness came on last year, and lasted about 8-9 months. Although it came on a few months before the anemia results, we still aren't sure precisely what caused it, but with B12 injections, more iron-rich foods and vitamin D supplementation, it gradually resolved after about six months. (MS has been ruled out multiple times…starting many years ago).
Then suddenly, I woke up on May 17th with the numbness and tingling back in full force, almost overnight. This time, in addition to a CBC, the doctor ordered a blood test for heavy metals which showed no mercury or lead in the blood, but did turn up arsenic at a level of "6". While different labs use different norms, the most frequently cited norms are anything less than a "7", so I was one point away from "not normal".
Further testing will help to show potential stored tissue levels — very important, and if or how they may be affecting my health. Most people can process/detoxify these heavy metals, but a minority cannot, in part due to possible methylation problems (see "Critical Tests").
There are many many stories of recoveries from misdiagnosed multiple sclerosis, CFS, fibromyalgia, due to heavy metal poisoning. One woman in our support group found she had higher levels of arsenic in her system, and treating it was one of the keys to her recovery.
I can't stress how desperately your help is needed so I can get the tests, and also the consistent follow-up checkups, to help figure out what is causing these set-backs and how to properly treat them.
They could be from heavy metals, methylation problems, chronic infections, mitochondrial problems, but we will only know the answers from the appropriate tests.
ANY DONATION IS SO VERY MUCH NEEDED and APPRECIATED! THANKS FOR READING THIS UPDATE! Please feel free to leave any comments below!