text:
Exploring chronic disease
18 Jul
In 1997, this engineer from the Detroit area was diagnosed with sarcoidosis and began Autoimmunity Research Foundation's Marshall Protocol in order to kill the chronic bacteria causing the disease. But suddenly things took a turn for the worse. A rapidly growing tumor was detected in his bladder and a cancer diagnosis was made. Armed with the knowledge that his bladder cancer was an inflammatory disease likely also caused by chronic bacteria, he decided to use the Marshall Protocol to treat his cancer as well. This allowed him to avoid several standard cancer therapies that may actually harm the immune response. Today his sarcoidosis has largely resolved and he's been cancer free for over a year. Meet Gene Johnson.
In 1997 I was working as an engineering manager for an automotive equipment supplier in the Detroit area. At 56, I was in the best shape of my life and was age group competing in distance running (ran two marathons), biathlon/duathlons (run-bike-run), and state sponsored track and field events. What I was soon to realize was that you can be in excellent physical shape and still not be healthy.
I hadn't suffered from a cold or flu for years. However, that changed in October when everyone in the office, including myself, became ill with what seemed to be a bad chest cold. It ran its course after about two weeks for everyone except me. I continued to suffer from a bad cough and fatigue. Finally, I went to see a doctor. A chest x-ray showed that I had non-caseating granulomas in the lymph nodes. The presence of the granulomas was later confirmed via mediastinoscopy biopsy and I was officially diagnosed with sarcoidosis. It was a good news/bad news situation. The good news was: "You don't have cancer"; the bad news was: "You have an idiopathic disease that has no known cause and thus no treatment or cure." In retrospect, I realize the office flu was just a precipitating event that weakened my immune system to the point where my sarcoidosis finally became apparent.
The standard medical position for treating sarcoidosis was/is to simply wait for two years in order to see if the disease might go into remission – something I now know simply doesn't happen. After my two years of discomfort, during which I experienced a wide array of symptoms in various body parts, my doctor decided that I should take the corticosteroid medication prednisone to palliate my symptoms. Within a week my symptoms improved.
Looking back, I realize that the relief I obtained from prednisone was only a short-term consequence of the fact that the steroidal drug slows the activity of the innate immune system. This leads to a decrease in the painful inflammation generated as chronic bacteria are killed. But since the immune response is weakened, the pathogens that cause any number of inflammatory diseases (in my case sarcoidosis) are able to spread with relative ease.
During my time on prednisone my sarcoidosis actually worsened. I was treated with prednisone on and off for five years before fully understanding that it was a bad idea with serious side effects. Thankfully, I stopped the drug in April 2005.
In the meantime, I had taken early retirement for health reasons and had decided to spend as much time as possible researching sarcoidosis on my own. Thanks to the Internet, I found the Marshall Protocol (MP) study site and began reading the extensive information it offered. The idea that sarcoidosis and, in fact, all chronic inflammatory diseases are caused by chronic intracellular and biofilm-like bacteria just flat made sense!
The more I read on the MP study site, the more interested I became. It was obvious that the MP was counterintuitive to mainstream dogma in many ways. The fact that acceptance of the MP requires one to embrace numerous alternate hypotheses means that the treatment has yet to be fully discovered or accepted by many mainstream researchers and doctors. But in my eyes, one of the most compelling aspects of the MP is that it works to re-establish the immune system itself as the agent for eradicating the pathogens that cause chronic disease. What can be bad about a healthy immune system??!!
I found a doctor who was willing to prescribe the necessary MP medications and had my vitamin D-metabolites tested. My 25-D was 41 ng/ml, which, as expected, confirmed that I had recently, and unfortunately, been supplementing with vitamin D. My 1,25-D was 50 pg/ml. When I posted the levels on the study site, the nurse moderators quickly explained that my 1,25-D level was 2.2 sigma high and that 98.6% of the population would be expected to have lower levels of the hormone/secosteroid.
Encouraged by the fact that my D tests were indicative of inflammatory disease, I became even more convinced that the MP would effectively treat my sarcoidosis. I started the Protocol on December 1st, 2005.
Another point that speaks well of the MP is that it is predictable. The science behind the Protocol dictated that I would experience immunopathology or a "herx" reaction as my immune system started to recover and regain the ability to destroy infected cells. The release of toxins into the blood as the infected cells are destroyed exacerbates the disease symptoms. In the first week, on Benicar alone, I recognized this effect in my hands as the arthritic joint pain intensified and then completely resolved in less than two weeks. Recognizing this first herx gave me additional confidence in the MP.
Another disease symptom that developed after I started the MP was low blood pressure, so I had to be careful not to get up too quickly. I was about five months into the MP when I first noticed this. One day, forgetting to be cautious, I quickly got out of bed and after a couple steps fainted for a few seconds. I fell and landed on my left hip. The fall jarred my whole body and naturally I was quite sore for a couple days. Soon after the fall, I started to pass blood for the next couple of voids. But because the bleeding quickly cleared up, I didn't make an effort to determine its cause. But later on, when I finally did see a doctor and completed a cystoscopy, it was determined that the blood noticed after the fall was caused by a bladder tumor.
No. The type and size of the tumor strongly suggested that it was already in place when I started the MP.
I tried to ignore the first sign of blood hoping it would just go away, but you know how that usually goes. Toward the end of November 2006, I started to see blood again so I couldn't ignore it any longer.
A CT scan was unremarkable for kidney stones or other possible causes of the bleeding. So my doctors proceeded to perform a cystoscopy of the bladder – a procedure that involves inserting a scope into the bladder via the urethra….ugggg!
Thanks to the video images generated by the scope, I was able to see the inside of my bladder landscape on the monitor, along with the technician. There it was! A tumor about 3 cm (a little over an inch) attached to the bladder wall. When the technician irrigated it, it produced blood.
We had found the source of the bleeding. The tumor was pale pink in color and looked very much like coral. It moved easily when the irrigation caused it to flow back and forth. The vision of the small, pale tumor wavering on a screen will stay with me forever. A later assay of the bladder wash confirmed abnormal cells and malignancy (indicating cancer) was expected.
After seeing the tumor, I immediately assumed I was facing the worst case scenario – a cystectomy, which is a surgical procedure that removes the urinary bladder. Fortunately this worst case concern didn't end up becoming necessary. But until I got more information about my situation from my doctor, my imagination cost me a couple nights sleep.
Seems like nothing is ever simple! I have also had benign prostatic hyperplasia (BPH) for several years. This caused a prostate bulge into the bladder and it turned out that to do the transurethral resection (TUR) of the tumor, a significant amount of the obstructing prostate would need to be removed.
My TUR was scheduled and the necessary surgery was done to trim away the prostate and then remove the tumor. It was not easy as my doc said there was a significant amount of blood from the prostate surgery that made it difficult to see the tumor plus the high loss of blood was a concern.
Standard procedure following a TUR for tumor resection is to wash the bladder with a chemotherapy medication such as Mitomycin C in order to destroy any cancer cells that may have dislodged from the tumor and remain in the bladder. However, in my case, this wasn't possible because of the open wound from the prostate surgery.
Before the surgery, I had many helpful discussions with the MP nurse moderators in regard to special measures that must be taken when one has surgery while taking the MP medications. I decided to keep taking the MP meds during my surgery, which naturally resulted in discussions with both my anesthesiologist and my surgeon. Antibiotics were selected to be compatible with those used by the MP so that I was successfully able to stay on the MP during and after the surgery.
Biopsy of the tumor gave definition to the problem. It was described as "High Grade Noninvasive Papillary Transitional Cell Carcinoma." In other words, using the WHO ranking system of bladder wall penetration and cell progression, my tumor was rated as "Ta" for cell wall invasion and as a "grade 3" for progression. The fact that my tumor was "Ta" suggested that it had been confined to the inner lining of my bladder. This was seen as a good thing. But "grade 3″ indicated that the cells of the tumor had been proliferating and dividing rapidly, suggesting that the tumor had a high rate of progression. This was seen as a bad thing.
Based on my own research, I learned that the higher the grade of the diagnosis, the higher the incidence of death from the disease within two years. It was a sobering thought! Approximately 67,000 bladder cancer diagnoses are made each year. The degree of severity and ultimate outcome varies depending on the ranking of the cancer. For example, a Ta grade 1 being the best prognosis and a Tcis grade 3, not so good.
There are two intravesical drug therapy treatments commonly used after a malignant bladder TUR, either BCG or chemotherapy such as Mitomycin C.
Intravesical therapy consists of drugs placed into the bladder in an attempt to prevent tumor reoccurrence. Bacille Calmette-Guerin (BCG) is an immunotherapeutic agent derived from live tuberculosis bacteria. Mitomycin C is one of several chemotherapy medications used for the same purpose. My doctor wanted to prescribe BCG because of the aggressive grade 3 nature of the tumor. It would have required a weekly two hour intravesical treatment for duration of 6 to 8 weeks.
After the proposed BCG treatment, he also prescribed follow up cystoscopy inspections of the bladder every three months for the next two years.
Did you follow his treatment regime or did you decide to deviate from it?
I explained to my doctor that I was following the MP to treat my sarcoidosis. I also explained that sarcoidosis and other inflammatory diseases are the result of chronic bacterial infection. Since I was trying to kill a high load of chronic pathogens with the MP, and BCG is made from live tuberculosis bacteria, it just didn't make sense to add more bacteria to the mix I was trying to eliminate.
This was especially true considering the fact that, like other inflammatory diseases, bladder cancer might also have a bacterial pathogenesis. Several cancers, including gastric cancer, have already been tied to bacteria and that list is growing. Also, since BCG is immunomodulatory, it was counterintuitive to take the medication when I was working to strengthen my immune function with the MP.
Patients on the Marshall Protocol take the medication Benicar 3-4 times a day. Benicar activates the Vitamin D Receptor – a fundamental receptor of the body that not only controls the innate immune system response but also the transcription of hundreds of genes. So besides working to strengthen my immune system, Benicar also allows my body to more effectively transcribe important genes, several of which are involved in cancer. For example, a functioning VDR is needed to transcribe the "Metastasis Suppressing Protein" MTSS1 – a protein that prevents cancerous cells from dividing.
By this time, I had used the internet to a great extent in order to research bladder cancer, my specific cancer diagnosis, and the possible treatments after a TUR. My best source of information was the MP web site and Dr Marshall's (and the nurse moderators') direct feedback concerning my situation.
I wrote a post on the Board asking whether BCG could prove helpful in fighting my cancer. I got an immediate response from Dr. Marshall that went something like this: "HELL NO!!!" After he calmed down a bit, he started to explain that there is documented evidence that BCG has been implicated in actually causing sarcoidosis and that neither BCG nor chemotherapy treatments are perceived as means to bring about true recovery. Rather, they are only measures designed to prolong life. While my doctor argued that the BCG would be contained inside my bladder and thus wouldn't negatively affect my other organs, Dr. Marshall wasn't convinced.
Dr. Marshall believes that BCG probably 'works' by diverting the innate immune response away from targeting the Th1 pathogens. The innate immune system is forced to mount a response to any pathogen that enters the body. So when BCG is introduced, a patient's immune system may very well stop targeting the Th1 pathogens that cause sarcoidosis, cancer, and other chronic inflammatory diseases and instead focus on dealing with the large amounts of live bacteria introduced by the drug.
Of course, it is when the Th1 pathogens die that the immune system mounts an inflammatory reaction to their death. So if BCG does divert the immune system from killing the Th1 pathogens, a patient will experience a temporary drop in inflammation. And since high levels of inflammation put the body under increased stress, the drug may indeed tack a few extra years onto the lifespan. But diversion of the immune system is not a curative therapy and quality of life can be expected to drop as the years wear on. Furthermore, since fewer of the Th1 pathogens are likely killed while a patient is administered BCG, they are actually able to spread with greater ease, causing much more trouble in the long-term. So while taking BCG might have added a few years to my life, had I actually taken the medication, my sarcoidosis, cancer, and possibly other related inflammatory diseases would have likely progressed, and returned in greater force later down the road.
The fact that BCG might be capable of diverting the immune system from killing the Th1 pathogens is also a red flag that bladder cancer has a bacterial pathogenesis. Whenever diverting the immune system (as BCG probably does in the bladder) results in decreased inflammation, one can hypothesize that the drop simply reflects a decrease in Th1 bacterial death.
Statistics on the effectiveness of BCG or chemotherapy support Dr. Marshall's views on BCG. When I looked for statistics on the effectiveness of BCG on the Internet, it was my impression that, even without taking into consideration the negative long-term consequences of treatment side effects, it was hard to find convincing statistical evidence that patients who were administered BCG or chemo treatments achieved a significantly long-term better prognosis than doing nothing. Appreciating the bleak reality of such statistics marked a turning point in my approach to recovery from cancer.
I realized that if chronic bacterial infection very likely drives the inflammatory pathogenesis of cancer, then the best way to defeat the disease was not to divert my immune system from killing the pathogens making me ill, but to keep it focused on killing them. The Marshall Protocol was allowing me to do just that. While I realized that activating my innate immune response with the treatment would temporarily increase bacterial death and subsequently inflammation, ultimately, when the pathogens were eliminated, I would end up actually cured from both my sarcoidosis and cancer. I would not just achieve remission or a slightly longer life before the diseases reoccurred.
So while deciding whether or not to treat my cancer conventionally, I began to get the feeling of deja vu. Just as prednisone is an immmunosuppressant used to treat sarcoidosis, BCG is an immunomodulatory agent used to treat cancer. While it had taken me a while to understand that taking prednisone was a mistake, I was quickly able to realize that BCG was a mistake as well. I have become my own health advocate and, if it doesn't make sense, I don't do it.
For example, a quick look at some of the side effects for BCG made me cringe. To name a few: bladder infection, bladder irritation, burning, frequent need to void, pain while voiding, bladder scarring, general infection… There was also this grisly recommendation: "Pour bleach into the toilet after urinating to kill any leftover bacteria."
Why is the possibility of infection so prevalent among those taking BCG? Probably because the drug diverts the immune system from effectively killing pathogens other than those introduced by the treatment.
Intravesical chemotherapy treatment, other than the bladder wash conducted at the end of the surgery, was simply never a viable option. Even my doctor indicated that the documented improvements in response to such therapy were not impressive. Again, documented improvements were measured on the treatment achieving a longer survival time and not a cure.
I give my doctor credit. He was interested in the MP and asked if he could speak with Dr. Marshall, which he did. He called me after their conversation and one of the points I remember him making was that he realized I was dealing with two illnesses – cancer and sarcoidosis. Dr. Marshall confirmed having a lengthy conversation with my doctor and I believe he came away convinced of my doctor's sincere concern for my health.
After that, my doctor was willing to let me continue the MP while not using BCG or chemotherapy. He continued to require cystoscopy inspections every three months in order to monitor the state of my cancer. He kept asking how long it would take the MP to cure my sarcoidosis so that he could start BCG treatment for my cancer. It hadn't yet occurred to him that the MP was very likely eliminating bacteria involved in both diseases.
Then I hit a bump in the road. My first follow-up cystoscopy showed two additional tumors similar to the first one, but of course much smaller. Surgery again was required to remove them but this time doc was able to use Mitomycin C as a chemotherapy wash of the bladder to be sure to kill any tumor debris that might have escaped the resection. The prostate wound from the previous surgery had healed nicely.
It was a big disappointment to discover the new tumors! But by that time I had been on the MP for 17 months and I continued to experience immunopathology for my sarciodosis symptoms. I was progressing as fast as possible through the various MP antibiotics, yet still maintaining tolerable levels of symptoms. I knew I was reactivating my innate immune response via the VDR and providing the gene transcriptions necessary to allow my body to naturally combat my cancer and prevent metastasis.
The logic was there to stay the course. Plus, I really didn't have any other reasonable options, at least in my opinion. I also had the support of my family and doctor which helped a lot, despite the fact that I could see his skepticism building. At that point I think doc was just waiting for the next surgery. Well, it didn't happen. Three months later my next cystoscopy was negative for tumors and the bladder wash did not indicate any abnormal cells.
It is too early to say my cancer is a thing of the past. I have only been cancer free for the past year. My doctor insists that we continue the bladder scopes every three months over the next 2 years and then every 6 months during the three years that follow. My grade 3 progression rating is a big concern for him, and of course for me.
In December 2007 my doctor prescribed a FISH assay of the bladder wash (FISH is an acronym for "florescence in situ hybridization," a method that allows for the detection of cancerous cells by chromosomal study). I tested negative which is very encouraging. The negative test result also indicates that other components of my urinary system such as the prostate, kidneys and the plumbing are probably also cancer free.
My bladder wash was again negative for cancer cells tested after my May 2008 bladder scope. That marks a full year without any sign on the cancer returning. I am very encouraged but again, time will tell.
At the time of my May 2008 cystoscopy, I had been on the MP for two and a half years and many of my sarciodosis symptoms had either resolved or improved. I really didn't have to make any changes to the MP in order to use it as a means to fight my cancer. I didn't experience any noticeable immunopathology associated with the bladder. My main objective was simply to get my innate immune system back to a place where it was working as effectively as possible so that it could combat the intracellular and biofilm bacteria driving my sarcoidosis and probably my cancer as well. I suspect my five years of prednisone had compromised my immune system enough to allow my bacteria to spread to a fairly large degree.
By the time one is diagnosed with cancer, the immune system has probably already been greatly compromised by the chronic bacteria that almost certainly drive at least part of the disease pathogenesis. For all we know, tumors may just be clumps of severely infected cells.
It takes time for the Marshall Protocol to kill chronic bacteria and full restoration of the innate immune response with Benicar takes months and, in most cases, years. So starting the MP after a cancer diagnosis is not the ideal scenario. Under such circumstances, tumors are already formed and the disease process is largely in place. The MP can only do so much to help patients dig themselves out of a hole and gradually turn things around.
Granted, I had started the MP slightly before my tumor was detected, but because I had not been on the treatment for a long period of time, I still developed two subsequent tumors down the road. It's only after being on the MP for a good two years that I believe I have been able to lower my bacterial load and restore my immune function to the point where now I seem to be keeping my cancer at bay. Unfortunately, though, some people with cancer don't have two years.
So the bleak reality that most of us are destined to get cancer, or some other inflammatory disease connected to the presence of chronic bacterial infection, means that the MP can be used as a very effective preventative measure against getting cancer in the first place. If I had started the MP several years earlier, before the onset of my inflammatory symptoms, it's quite likely that the treatment could have heightened my innate immune response to the point where the bacteria that likely cause cancer and sarcoidosis might not have spread in the first place.
Such thinking is backed up by statistics from the MP study site which show that among a high risk population (hundreds of generally elderly people at a high-risk for cancer) there are no instances of active metastasis (spread of infected cancerous cells). Clearly, the MP is working to prevent the progression of cancer in the first place. As Dr. Marshall has stated, "Benicar reactivates the VDR. One of the genes transcribed by the VDR is MTSS1, the Metastasis Suppressor number one. Old tumors might hang around, but I have seen no evidence of cancers spreading while folk are on the MP. Metastasis is apparently suppressed. Funny about that… Remember that you read it here first."
However, in my opinion, even those patients not using the MP as a preventative therapy should start it ASAP after a cancer diagnosis. They certainly have more hope of truly recovering from their disease if they use a treatment that improves immune function and gene transcription, than using treatments like BCG that might actually interfere with the immune response. I had not been on the MP very long before my cancer diagnosis and I am confident that the reason I am cancer free today is because I used the treatment to gradually endow my immune system with the power to fight my disease. From now on, I am convinced that my immune response will only get stronger, making my prognosis a positive one.
2 Jul
Several years ago, this grandmother from Oklahoma was forced to quit her job due to debilitating symptoms including chronic pain, fatigue, and extreme dryness in her eyes and mouth. But today, after 2 1/2 years on Autoimmunity Research Foundation's Marshall Protocol, she feels like a completely normal person again and is spending much more time with family and friends. Meet Bonnie B.
I first started to feel symptoms of illness when I was in high school. I suffered from fatigue, weakness and joint pain. Yet, the symptoms were rather vague and only flared periodically.
In fact, they stabilized for the most part until I had my first child when I was 23. At that point, the same symptoms returned, but this time they were stronger. They were also accompanied by new central nervous symptoms such as blurry vision and dull headaches. An EEG test showed that my brainwave function was off balance.
But in a few months, the symptoms started to wane again in an on/off fashion. They would either flare or not be much of a problem. During the times when my symptoms weren't flaring, I would try to push the idea of disease from my mind and considered myself healthy. Yet by the time I reached my late 30s, the pain and symptoms started to become more prominent and started to become constant. The fatigue and weakness were severe.
At that point I had just stopped attending nursing school. During one of my nursing clinicals, I had treated a woman with lupus. As her caretaker, I was required to do a case study about the disease. As I researched lupus, I was struck by how many of my own symptoms resembled those of my patient. I was also flabbergasted by the fact that her disease history was very similar to mine.
I had started seeing several doctors in an effort to understand why I was feeling so ill. I mentioned the fact that I might have lupus to my doctor and it turned out that he had also been considering that possibility. He ran an ANA (anti-nuclear antibody) test. Positive results to the test strongly suggest a patient is suffering from lupus. My test results were positive, and since I also displayed essentially all the symptoms of the disease, I was officially diagnosed with lupus.
Around the same time, I saw an eye doctor. I had gone to see him partly because my eyes and mouth were incredibly dry. It turns out that dry mouth and dry eyes are classic symptoms of Primary Sjogren's Syndrome. Thus, I was also diagnosed with Sjogren's.
My doctors insisted that corticosteroid medications could help my conditions. I started a month of heavy high-dose IVs containing the steroid medication medrol. At the same time, I was also put on another steroid medication called methodextrate. After a month of intensive IV therapy with medrol I began to take it orally, and did so, along with methodextrate, for the next 12 years. I now understand that while these steroids may have temporarily lowered the inflammation generated by the bacteria causing my symptoms, the fact that they slowed by immune system allowed the same pathogens to spread with much greater ease, making me much sicker over the long-term.
So as time wore on I got worse, and in the process, became increasingly cognitively impaired. I suffered from a high level of brain fog. I started to have trouble coming up with the correct word when writing or speaking, and also had problems reading because words didn't seem to register anymore. This meant I could no longer enjoy reading, which was difficult. I also suffered from short-term memory loss.
Despite extreme difficulty, I continued to work as a teacher. But during the early 90s I started teaching under very stressful conditions. I began to suffer from extra fatigue and joint pain. I also started to have TIAs or "mini" strokes that can sometimes be followed by an actual stroke. Finally, all my symptoms flared so badly that I had to quit my job and go on disability. The symptoms hit me all at once and harder than ever. I felt really terrible.
At the time I was seeing a doctor in Texas who was really knowledgeable about cutting-edge medical treatments for lupus. For a while he had me on an antibiotic therapy called the RoadBack Protocol. Like the MP, the treatment uses pulsed, low-dose minocycline. But without the help of Benicar and the other bacteriostatic antibiotics used by the MP, I was unable to fully target my bacterial load.
Then, one day, my physician informed me that he had learned about the Marshall Protocol. He was really excited about it and had come across the treatment in an effort to treat scleroderma – a skin condition that he suffered from. He planned to start the Marshall Protocol himself and also prescribed me the medications necessary to begin. I started the MP about 2 1/2 years ago.
After some time, I was forced to switch physicians, in part because I wanted to see a doctor who practiced closer to Oklahoma, where my husband and I currently live. I found another MP doctor in Oklahoma through the MP study site and he has proven to be extremely helpful and knowledgeable.
Since I had been taking corticosteroid medications for 12 years, and the medications were slowing the activity of my immune system, I needed to stop them before starting the MP. I was surprised that a few ups and downs aside, I was able to wean off them without too much anguish. I definitely felt an increase in my disease symptoms as I weaned off the steroids, but it was livable and I was able to "hang in there." I have a strong feeling that the reason I was able to wean off the steroids with such success was that I took Benicar as per the MP guidelines during the weaning process. The anti-inflammatory effects of the medication surely made it easier for me to tolerate the heightened level of symptoms that resulted when my immune system started to "wake up" again and begin to combat the bacteria making me ill. After the weaning process was complete, I spent several months stabilizing on Benicar alone before starting the MP antibiotics.
Within six months of starting the antibiotics, I felt a bit better in the sense that my fatigue and weakness were not as bad as before. My sense of overall wellness also improved at that point. My immunopathology (bacterial die-off reactions) fluctuated as expected, depending on my antibiotic dose and the combination of antibiotics I was taking at any given period of time.
I'm on Phase 3 of the MP and almost feel like a completely normal person again. I have resiliency and energy for the first time in years.
For as long as I can remember, I've had a housekeeper come to my house to do the cleaning for me. Now, I have started to do all the cleaning on my own again. I do all my own shopping again too. There are many other little things I'm able to do now that I haven't been able to do for a very long time. I'm able to travel much more easily. I go on more vacations and have been able to visit my children frequently.
The results of my ANA tests have been negative the last few times when it was checked, strongly suggesting I no longer have lupus. Of course, before I started the MP the test results were positive. My eyes and mouth feel more moist and I doubt that I'd qualify for a Sjogren's diagnosis anymore either.
I also feel much more alert and I certainly don't have the degree of brain fog that I had when I started the MP. Any central nervous system symptoms are minimal if present at all. I can finally enjoy reading again and can spend more time on the computer.
I was already light-sensitive for years before starting the MP. When I started the MP, I continued to stay out of sunlight and bright lights. It's hard to judge how much my light sensitivity has improved because I'm still cautious about not getting too much light, but it doesn't seem that light bothers me as much anymore. There have been several times when I've been exposed to sunlight, yet failed to react with the increase in symptoms that I would have expected before the MP. We just got a new puppy. I've been taking him on more walks outside during the day and have not been bothered by the light at all.
Two appointments ago he told me that all my lab work indicates that I'm recovering. He said that the MP is clearly helping me.
The MP seems daunting at first, especially because of the dietary and sunlight restrictions. But it's so worth hanging in there! Right now I can function better than I have in years, better than I could when I was younger! Oh, it's so worth it! I know the hard part is behind me and I'm enjoying life again.
I see no limits to my ability to recover and hope to become increasingly active. I also hope to share the story of my success on the MP with as many people as possible since I firmly believe the Marshall Protocol is the answer for illnesses such as lupus, Sjogren's and other inflammatory diseases.
19 Jun
Sick ever since childhood, this resident of New Jersey finally hit rock bottom after developing diabetes and becoming blind in one eye. Not to mention the fact that by the mid 80s his bowels were seriously affected and sarcoidosis had spread throughout much of his body. Yet, after several years on Autoimmunity Research Foundation's Marshall Protocol, this grandfather has largely recovered from each of his diseases, to the point where he is barely conscious of symptoms and has extra time for work and play. Meet Chris Eastlund.
Things first started to go wrong when I was around 8-10 years old. I spent an entire summer just sleeping on my grandmother's couch. I'm told I was only awake for about four hours a day. I now realize that such fatigue is one of the symptoms of pediatric Lyme, but when I was taken to the Mayo Clinic I was told nothing was wrong with me.
I pushed on, but could never play endurance sports. I could never run for even 1/4 of a mile before having to stop. At first I thought I could join the cross country team and train my body to handle more exercise. While running I would feel better, but then a few hours later, I would suffer from feelings of fatigue and soreness – what is often referred to as post-exertional malaise.
The first severe incident I experienced, which made it clear that something was drastically wrong with me, occurred during the summer of '83. I was driving home when my neck completely locked up. I couldn't turn my head at all to look at the traffic coming at me from other directions. However, the issue resolved somewhat over the weekend so I decided to dismiss it as a summer flu.
But a month or two later, I was forced to go to the doctor because I was running a 103 degree fever. The doctor did a few tests and said, "I'll meet you across the street at the hospital." When I got there, the fever had risen to 105 degrees. I was in isolation for about a week, until they figured it wasn't contagious because I hadn't died yet.
During that week, and over the next couple of weeks, the fever often bounced back up close to 105, with the peaks slowly decreasing. To control the fever, the nurses gave me large quantities of aspirin. The aspirin decreased the fever, but only after generating an hour or two of cold sweats, which left me drenched. When the aspirin wore off a few hours later, the fever would soar again. I would begin to shudder uncontrollably from the chills for another hour or so. I was miserable and the experience was extremely exhausting, since I was continually alternating between chills and bed-soaking cold sweats.
After about three weeks in the hospital, the fever seemed to be tapering a bit, and the doctors didn't know what to do with me, so I was sent home. Nevertheless, I didn't experience a fever-free day for the next six months. Even after that point, the fever would come back about monthly, although not as intensely. In retrospect, it seemed very similar to a tick-bourne relapsing fever. I was living in Minnesota before the fever incident, and doing a bit of canoeing in the boundary waters. So I could have definitely acquired a wide variety of bug bites during that time.
I went again to the Mayo Clinic, where the doctors again could find nothing wrong with me. All I could do was try to push on. Soon, my family moved to New Jersey where I began a new job. One day I ate a very nice, fatty, Reuben sandwich and realized that the meal caused my fever to return. After that, I continually noted that my symptoms would flare after eating fatty foods. Any fatty food would trigger both fever and bowel troubles.
Soon, I developed a serious case of irritable bowel syndrome and was officially diagnosed with the disease. It got worse and worse, to the point where there was bleeding in my stools, and daily painful cramping. The fevers kept returning, and the hospital trips got more frequent. I got used to things like celebrating my birthday in the hospital.
Then, during Thanksgiving dinner of 1988 (or thereabouts), I tried to stand and realized I couldn't get up. When I stretched my leg out, I realized I had a large lump on my calf that was about the size of a robin's egg. My doctors thought it might be cancer so they cut it out. It turned out to be a huge granuloma. My doctors had never seen anything like it and I was later informed that my case was the featured discussion in the Monday physicians' meeting.
A sarcoidosis "expert" weighed in on the issue and said the granuloma was too "strange" to be caused by sarcoidosis," and a negative Kveim test (a skin test used to diagnose sarcoidosis) seemed to support his view. So I was left without an explanation. During the years that followed, I was paranoid that a similar granuloma could grow on my heart and simply kill me. That's why I sometimes have to calm myself down when I talk to people with inflammatory disease. My own experiences have made it clear that these diseases can be deadly.
The fevers began to occur again and I desperately wanted to get admitted to the hospital in order to get more testing done. But my fevers only last about 4 days. Since it took several days to consult a doctor in order to get admitted, I could never maintain the fever long enough to get in. So I scratched my head and thought, "I'll make myself so sick that they will be sure to find something wrong and admit me to the hospital." I proceeded to drink and eat as much fat as possible. I downed whole milk and every fatty food in site. It worked. I was royally sick. At that point I didn't even care about making myself feel bad. I was so used to pain and symptoms that extra symptoms almost didn't even matter anymore. When they finally got around to doing a bone marrow biopsy, I'm not even sure they needed anesthetic. It was painful but I didn't care.
The biopsy revealed more granulomas and this time my doctors enthusiastically told me that I did indeed have sarcoidosis. It felt good to have a diagnosis because for the previous 7-8 years I had just been drastically ill and scared out of my wits with no explanation. In 1991, I was put on the corticosteroid medication prednisone.
The short-term palliation made me feel a little better, so in '96 I decided to try going on a church ski group outing with my son. I was careful not to overdo the physical activity. After skiing I walked away tired and not hurting. But then two days later, I started to feel much worse. I got so ill that I could barely walk and could only manage a slow trudge. I tried controlling my symptoms with Motrin, but when I stopped the medication, I realized that my body was in severe pain. My legs were also covered in thumb-print sized red spots.
My wife had to borrow a wheelchair to take me to the hospital. Another biopsy was performed. This time it revealed sarcoidosis in the blood vessels of my leg. At that point I realized that once a person is infected with the Th1 pathogens, any repair attempt by the immune system simply introduces more of the bacteria.
I depended on the palliative effects of prednisone to function. Often I had to raise my dose all the way up to 60 mg. I knew the drug was compromising my immune system and had a plethora of side effects but I needed some sort of a life. I stayed on the prednisone and decided to plan a trip where my son, my cousin, and I could simply float down a Wisconsin river on a raft. We specifically chose a quiet river, so that the trip downstream would require little exertion. Nevertheless, a day and a half into the trip, I became symptomatic once again. The malaise was intolerable and I suffered from aches and pains in my muscles. I had no energy whatsoever – certainly not enough to cope with any mistakes on the water. I also couldn't think straight, and thus became a liability to the group. We had to bug out and thumb a ride back to the cars.
After returning home and doing nothing but resting, I felt somewhat better. The next time I tried to do any form of physical activity was in 2003. After my brother's funeral, some of us went out in 30 below weather to shoot clay pigeons. My symptoms immediately flared again.
It was then that I realized exactly how little it took to put me over the edge. I was so ill that even the most mild forms of exertion could make my symptoms intolerable. Anything I did seemed to put me in danger. Around that time, I was also diagnosed with diabetes. I felt dizzy and extra fatigued. A lot of things seem to be failing. I developed retinopathy, a condition in which the eye leaks fluid, and will cause blindness if uncontrolled. My eyes were so affected that I started going blind in one eye. My cholesterol and triglycerides levels had also soared and my PSA, which measures prostate function, was out of range.
At that point, I took inventory and realized just how ill I was. A year or so before, I had come across the website Sarcinfo.com, the precursor website to what is now the Marshall Protocol study site. The science on the site had caught my attention. But at the time, one of our sons was still living with us and I thought I should wait to start the treatment until he had finished his final year at school. But once the blindness and the retionopathy began, I realized that I was not looking at very much fun for the rest of my life, or necessarily a very long one. I took the plunge and started the Marshall Protocol. My family and friends teased me but I stuck with it. My kids were sure I'd gone off the deep end and had joined a cult.
It took me six months to get through phase 1. I was basically miserable the whole time but tried to work for the first three or four months. That didn't go so well, so I combined vacation and holidays and took the last two months of 2004 off. I spent nearly the whole time on the couch. When I first ramped my minocycline up to 50 mg, I spent a couple hours every other day shaking as a result of the bacterial die-off reaction. But I pushed ahead because I had the feeling that if I could get through phase one, the other phases would be easier to manage.
This proved to be partly true. I did feel better during phase II, but I still had to take days off work, and wasn't that productive. I finally managed to talk my company into giving me a few months of disability which allowed me to rest more and better manage my immunopathology. One of the phase three antibiotics threw me for a loop for a period of time, particularly by inducing bacterial die-off in the brain. But I was always aware of the fact that I was killing the pathogens making me ill, and with each year on the treatment, particularly after year three, the die-off became easier and easier to tolerate.
One of the phase three antibiotics also temporarily brought back symptoms of depression. I had seen a doctor for depression during the time when I was suffering from my severe fevers, but thought that my depression was just a result of coping with extreme illness. But I now realize that at least part of my depression related to the presence of bacteria, as symptoms of depression did return with my immunopathology. Once on the MP, I went through a long period where I had great problems making decisions. Sometimes I would wake up feeling paranoid. Now those symptoms are gone. So I don't have to take Valium anymore (I used to take it in order to manage the mental symptoms). The fact that my performance reports from work are coming back with higher scores definitely shows I'm making better decisions.
I have completely recovered from diabetes. I used to have a meter that allowed me to measure blood sugar and I gave it away to my brother. I also have no more retinopathy, though some permanent damage remains. My blood sugar is normal and I have no problems when consuming carbohydrates. No more fuzziness or dizziness. In fact, I have almost lost my taste for sugar. If I eat too much sugar it actually seems overly sweet.
I never have a fever anymore. My irritable bowel syndrome has resolved to the point where I feel only occasional mild exacerbation of symptoms if I take one of the phase three antibiotic combinations. I haven't had a test to confirm that I no longer have sarcoidosis, but my inflammatory markers have come back into the normal range. My SED rate has dropped and my IGG levels have started to come back up.
My fatigue has vastly improved and my energy level is up. Pre-MP I started to get poor ratings on progress reports from my boss. Now, the ratings have gone up due to the fact that I once again have energy to dedicate to my job. Before the MP I would be exhausted at work before 5:00 pm and have to rest on my desk just to have the energy to make it home. Now, on many nights, I have the energy to work late in order to complete extra projects.
Before starting the Masrhall Protocol I was constantly plagued by my symptoms and always fighting through them. Now, unless I get too much sun, I barely think about them. If I do feel a little tired, an extra Benicar allows me to bounce back.
Several years ago I was forced to miss my son's graduation because I was so sick, but now I can look ahead at upcoming events and have no doubt that I will be able to attend them. I was just at a wedding that I thoroughly enjoyed. When I get back from work these days I still have some energy, and I can play outside with our grandchild as long as I wear a hat, zinc-oxide sunscreen, and gloves. My endurance isn't up to wilderness travel yet, but I'm pretty sure I'll work up to it.
I forgot to mention before that in my 20s, during college, I started to have back problems. My back would go out and I would feel like an old man. I tried to get into bowling (a relatively mild sport), but couldn't stick with it because my back or arm would go out, leaving me suffering for at least three weeks. Although I still haven't gotten back to bowling regularly, now when I bowl, I walk away without pain. I should mention that both shoulders froze up at different times during the MP. However, the physical therapist was surprised at how quickly and completely the problem resolved.
When it comes to exercise, I feel much more resilient but I don't push myself. Since I never really was able to exercise before in my life, I don't have any form of exercise to return to, but hope to do more camping and outdoor activities in the future.
I'm essentially reversing 50 years of illness, so I occasionally kill new colonies of bacteria that appear when my strengthened immune system wears away at fibrotic tissue. For example, a week ago I was going up the stairs when I had to stop because my ankle felt funny. For two nights it felt as if it had been twisted. I was probably killing pathogens that had been embedded in the fibrotic tissue of the ankle. So although all my symptoms have largely resolved, I still have bacteria left to kill.
Before starting the MP, I was already very sensitive to light. In 1987, I took a trip to the Virginia coast with some friends. I already knew I was sensitive to the sun so I brought a beach tent. I didn't get sunburned, but nevertheless, that night I developed the chills, shakes, and a mild fever. I proceeded to shake for the entire day that followed. It was the first time I realized that sun exposure can really flare the symptoms of Th1 disease.
Once I started the MP, I still had to be careful about avoiding sunlight and also wore sunglasses indoors when the lighting was bright or when I was on the computer. After witnessing the fact that I would start to physically shake after meetings in a sun-filled room, my boss was nice enough to move our group meetings into a room with no windows. My management was also OK with the fact that I wore sunglasses at work.
Today my light sensitivity has improved tremendously. I no longer wear sunglasses around the house or when on the computer. I used to wear a desert hat that wrapped around my face in order to avoid sun. On my last trip, I didn't take it with me and held up just fine. If I drive off without the 2% NoIR glasses, I can get by with the 10%, though I haven't done that enough to not be anxious about possible light flares.
It was extremely difficult to gather the will to ask a doctor to put me on the Marshall Protocol at a time when I was so beaten down by both my symptoms and the medical community. I had to go against everyone's advice and say, "I don't care what you think, this is what I know I have to do!" After all, once into the MP, I had periods of very difficult immunopathology, but I could tell the treatment was working. So it was that time – when I was at such a low point in life, yet had to step up to the plate and get a doctor to prescribe the MP medications – that was the hardest.
The second hardest part about the treatment was experiencing periods where my bacterial die-off reaction was constant. When I went through such periods, it was sometimes hard not to panic, and those around me would also start to panic just from watching me. Convincing them, and myself, that I was still doing the right thing would have been impossible without the help of the board moderators on the Marshall Protocol study site.
Do the treatment the way it is spelled out. Any time I tried to do anything that varied from the treatment guidelines I got burned. Also, don't push yourself too hard, there is no need to experience intolerable immunopathology. I also encourage people to start the Marshall Protocol as soon as possible, at the very first sign of disease symptoms. I wish I had done the treatment earlier. It's important for people to realize that the sooner one starts the MP, the easier it is to do and the shorter the recovery period becomes.
It's frustrating, because I've tried to talk my kids into doing the Marshall Protocol but they seem to be waiting until they hit rock bottom to start it. Happily, my wife has started the treatment. She was recently diagnosed with Lyme and arthritis, and her vitamin D ratio is worse than mine was. She's 18 months into the MP and seeing decent progress. But one of my sons has Lyme disease and has decided not to do the MP. I am disappointed in his choice.
Sometimes people want to know why the MP takes so long. I ask them, "How long does it take to treat tuberculosis?" It can take decades to treat TB, so treating disease symptoms that have plagued me during my entire life is not going to happen quickly.
Well, my wife and I finally have the energy to get our kitchen redone – a project which will require quite a lot of lifting and moving boxes of stuff. It feels good to be investing in our future, something I barely thought about before the MP. I have more gumption and I am enjoying just living as a healthy person. I plan to try adding more activity to my life. We have our second grandchild on the way, and I look forward to spending time with the new child.
3 Jun
In 2005, this father of seven could hardly breathe and suffered from intense joint pain. Exhausted and sore, he found it extremely difficult to walk up the stairs. Now, after about 2 1/2 years on Autoimmunity Research Foundation's Marshall Protocol he's essentially pain and symptom free and is back to digging trenches in his garden. Roy P. will now take your questions.
Everything started around Christmas of 2000. I was at work when my legs started to swell down in the area by my ankles. I was also in pain, couldn't walk, and had a very difficult time breathing. A co-worker called my wife who took me home. We saw a doctor and I was diagnosed with rheumatoid arthritis. However the doctor still wasn't able to explain why my legs were swollen, or why I was suffering from other severe symptoms. Personally, I thought I was having a heart attack. At that point I asked, "Do you think any of this is related to the lumps I have under the bicep of my right arm?" He paused, and said, "What lumps? Show me." After examining my arm he said "Wait a minute, I know what else you might have….sarcoidosis!" I proceeded to have a series of lung X-rays done which confirmed that I did indeed have the disease.
My doctor told me that one of two things would happen to me. Either the disease would fizzle out on its own (something I now realize does not happen) or I would die. His only solution at that point was to put me on prednisone, a corticosteroid medication that works by slowing the activity of the immune system. While this causes short-term palliation by slowing the number of toxins released by the bacteria that cause sarcoidosis, I now realize that the drug actually allowed the bacteria at the heart of the disease to spread.
Because of its immunosuppressive effects, when I first started prednisone, I felt like a million bucks. But then, not surprisingly, I started to gradually feel worse again. More symptoms appeared and I started to suffer from severe fatigue. I had such a hard time breathing that I literally couldn't do anything – any form of mild exertion caused my breathing to go totally out of control. My energy level was at a minimum.
At that point I started to use the Internet in order to research sarcoidosis on my own. I found sarcinfo.com- the precursor website to the Marshall Protocol study site. I learned that Marshall's molecular modeling research had allowed him to create a new pathogenesis for chronic disease which implicated bacteria as the cause of the illness. The moderators on the site also explained how prednisone was negatively affecting my immune function and based on their advice, and my doctor's subsequent permission, I stopped taking the medication.
Three months later, I saw a pulmonologist who tried to convince me that there was no connection between vitamin D and sarcoidosis, and that sarcoidosis has no known cause. He was functioning from the older body of medical knowledge and refused to even review Dr. Marshall's new discoveries. But at least he didn't force me to go back on prednisone.
Over the next few months I continued to feel worse. New body aches appeared and I started to develop headaches after exposure to bright light. I also started to suffer from increasing amounts of brain fog and short-term memory loss.
It was so bad that at this point I can't remember very much to tell you about my symptoms at that time….or what my brain fog was like! All I know is that it was bad and I started to have an ever increasingly hard time at work.
Well, due to a takeover of my company, I stopped working and decided to go back to school instead. I managed OK because the department chair and secretary knew about my illness and were very accommodating. Some days though, it was extremely hard to get out of bed and go to class. Luckily, I only had classes 2-3 days a week. I did well in spite of my symptoms, but today I have to admit that I don't remember a single thing I was taught.
After I graduated from school, I went back and took another look at sarcinfo.com. This time, the moderators on the site sent me over tomarshallprotocol.com which had evolved into the main study site. After reading even more about the treatment I decided to finally give it a try. I started in September 14th of 2005 when I received my NOIR's (sunglasses that block UV rays).
It was tough because around the same time I started the MP I had to go back to work. I worked contract jobs. I had to take a few days off because my immunopathology (bacterial-die off reaction) was very strong, but I managed. One time I accidentally took too high a dose of one of my antibiotics and felt terrible. After that experience, I was extremely careful to make sure I took my antibiotics correctly.
In fact, my advice to anyone who has to work while on the MP is to very careful and deliberate about taking your antibiotics and Benicar. Write everything down, such as when you need to take a dose of medication and keep track of your antibiotic levels on paper. I keep a weekly pillbox loaded with all the Benicar and antibiotics that I will need and put the drugs into the pillbox during a time when I can work slowly in order to make sure the pills are correct.
I have a Palm Pilot alarm that alerts me when I need to take a new dose of Benicar. It also alerts me as to where I am in my antibiotic cycle so that I am always on schedule and never forget to take the meds. I've found that if my immunopathological reaction is too strong, I can use extra Benicar to tone it down, so I keep extra Benicar handy. I also carry around a big bottle of ibuprofen (which is not an MP medication) because I find that it can help control my swelling (inflammation) in an emergency.
One of the hardest parts about working while on the MP was the fact that I needed to block light while my co-workers did not. Everybody else wanted the bright lights on, and it was hard to come off as a weird batman type that would prefer them off. But I made sure to communicate my need for light restriction to my boss who did allow me to switch off the lights over the row where I sit. So that's been a help.
I was so sensitive that even when I was indoors wearing sunglasses and all the lights were off except one tiny light, I felt as if I could see everything perfectly. At night when driving, I could wear sunglasses and see every detail on the road. It was almost as if I had developed night vision. Today my light sensitivity has improved tremendously to the point where I can't see anything in the dark if I'm wearing sunglasses. I only need to wear sunglasses when I'm outside in the bright sunshine. Sometimes I garden all day while wearing only long sleeves, a special cap, and gloves and get no sun-related symptoms.
I'm feeling so much better. I've been able to ramp my way up through the highest level of each antibiotic combination on the MP and still manage the immunopathology. Even while on high doses of the antibiotics, I find that my breathing is dramatically better.
I need to walk up fifteen stairs to reach my bedroom. Before the MP, I couldn't walk up all the stairs. I would have to stop halfway up, rest, and then continue. Now I go up and down the stairs many times a day without even thinking about it. Sometimes my breathing still gets a little heavy, but it's nothing like it was before.
My fatigue is largely gone; literally it is nothing like it was pre-MP. Occasionally I feel mild fatigue but it is always correlated to a difficult time in my cycle of antibiotics. Now, I am always busy. I'm always working and doing something, whether it's working in the office or working out in the yard. Before the MP I couldn't garden at all. Now I can dig trenches and put in sprinkler lines.
My arthritis/joint pain is much, much better. I guess I still might feel it now and then but I'm hardly conscious of it. My brain fog and memory has improved tremendously, although one of the MP antibiotics is still able to elicit occasional moments where I experience episodes of blurry vision. But I know the symptoms are just a result of my body killing bacteria and I'm confident the blurry vision will go away completely in the coming years.
Overall my quality of life is just so much better. My whole attitude is better. I am more emotionally stable and I can handle much more stress. Things don't bother me the way they used to – overall, I'm a much calmer person.
Unless I have a bad day of immunopathology, I am almost pain and ache free. If I do have pain, it's generally fleeting. Before the MP all I could think about was my pain. That, and what to do about my life and how to support my family. Now I hardly ever think about my symptoms at all.
I have seven kids, and I'm once again able to be a very active parent.
My children have actually been a source of help during my time on the treatment. In the beginning it took them a while to get used to the fact that I was very sensitive to light. They would accidentally flick on a bright light and then say, "Oh whoops! Sorry Dad!" But then I actually enlisted their help. The little ones would go around turning lights off. We changed the bulbs in the house to 40-watt bulbs to cut down on brightness.
Oh yes, my wife and I sat them down and explained what the treatment entailed. We explained that I would feel worse before I would feel better, and that I would need to avoid bright lights. They were very understanding and accepting of my circumstances.
Oh yes. I love to read. Mostly non-fiction; math, science, religion, the founding fathers are some of my favorite topics.
I look forward to getting back to the outdoors and going camping, fishing and hunting again. Those were all activities that fell by the wayside when I got sick but I think I can start to enjoy them again now.
23 May
Four years ago this Australian native's joint and muscle pain was so bad that he was barely able to walk, and his cognitive function had diminished to the point where he could hardly think straight. Plagued by intense chemical sensitivities, his days were spent indoors wearing a carbon respirator. Today, after about three years on Autoimmunity Research Foundation's Marshall Protocol, he could talk for hours about how much better he feels and his wide array of symptoms are essentially gone. Meet Peter de Jager.
It's difficult to tell when I first started to feel sick, since it developed so slowly. Even as a teenager I wondered how people could run long distances, breathing through their nose! – I couldn't, I was already a mouth-breather.
In my early twenties I had a bout of glandular fever (Epstein-Barr virus) from which I took a long time to recover. In the late 1970s I constantly had small scabby sores in my nose.
I first began to think that I might be chronically ill about 25 years ago and my symptoms kept on increasing gradually.
In the early 80s, when I was around 35 years old, I started to suffer from very severe sore throats and an array of flu-like symptoms including a high level of fatigue. I became very sensitive to light. My eyes had a hard time adjusting to sunlight, so I was forced to squint and wear dark sunglasses whenever I was outside during the day.
I also started to suffer from rhinitis – a disease that involves irritation and inflammation of internal areas of the nose. My nose was running all the time. Some doctors called it allergies or hay fever. The name didn't really matter. One allergist tried to treat the symptoms with a technique called desensitization, which involved injections of dilute solutions of the things I was supposed to be sensitive to.
I began to get progressively sicker, both physically and cognitively. I couldn't think! Before becoming ill, I had easily acquired two degrees with double majors: one major was in Pure Mathematics. But by the early 90s, I could no longer add up a column of five figures. I would literally have to count on my fingers. Eventually, the only way I could add numbers was to put them into a spreadsheet. The "flu" and fatigue was now constant. I coped by resting or sleeping as much as possible – to the extent of falling asleep when I was supposed to pick my daughter up from a school dance.
My general practitioner got to the stage where he finally said, "I just don't know what's wrong with you – I think you'd better see a psychiatrist." So I was neatly blamed for his inability to diagnose or treat me.
At that point (early 90s), I went to work in a new building, and began to suspect that the air quality in the building was affecting me. I persuaded management to test the formaldehyde concentrations, which were found to be high. The amount of natural ventilation was increased, until the building's managers realized that this was driving up the cooling/heating costs….
I went to see a few "alternative" doctors and other health practitioners, such as naturopaths. Depending on their areas of interest, they diagnosed me with different things.
I went to one doctor who specialized in environmental medicine. He finally diagnosed me with Chronic Fatigue Syndrome. Later, the Australian Medical Association suspended him from practicing, simply because he was trying to figure out what might be wrong with his CFS patients and referring them for non-standard tests by pathology laboratories. The Association saw this as a doctor conducting research on patients, which is prohibited.
Another doctor diagnosed me with reactive hypoglycemia, a condition in which blood sugar goes up and down like a yo-yo, causing dizziness, irritability and even fainting.
I saw about four doctors who claimed to specialize in CFS, who ordered more allergy and pathology tests and prescribed a variety of supplements.
A naturopath came closest to the truth, diagnosing a chronic low-grade bacterial infection using some device (I don't remember the name).
Elimination diets, homoeopathy, Chinese medicine and herbs, acupuncture, more allergy tests (one of which showed that I was allergic to some obscure Kenyan grass I could not possibly ever have been in contact with: it just showed that my immune system had no idea what it was supposed to be attacking) – I tried them all. I won't bore you with a list of supplements that I tried – it might be better to give you a short list of what I didn't try. Everything helped to some extent, for a while, but I was still on a downward path.
The environmental doctor referred me to a gastroenterologist colleague. That physician's patients had reported that their fatigue had decreased after a particular procedure I underwent what is referred to as a bowel flora transplant. Strong antibiotics are used to kill existing bacteria in the bowel, then new flora (bacteria isolated from a healthy donor's feces) are introduced (don't ask how!). The procedure bought me about 3-4 years of feeling somewhat less symptomatic – possibly the high-dose antibiotics strongly suppressed my immune function, to the point where I temporarily experienced less of a bacterial die-off reaction.
Nevertheless I was still pretty crook (Australian for feeling bad). When I went to see my naturopath, I had to walk about 200 meters from the train to her office and then 200 meters back to the train after the appointment. After even that minimal amount of exertion I would have to rest for at least three hours.
All I could do was try to cope. I went to work, and when there, could barely perform. As soon as I left work, I went home and slept. On the weekends, all I did was rest and sleep. I consistently took all the sick days and leave that I could. I had severe muscle pain and severe joint pain – I could hardly lift my right arm. I would drive to and from work in a complete fog: I still don't know how I didn't have a serious accident.
A few years later (mid 90s – I was now pushing 50) I was unfortunately assigned to a job that forced me to work in another building. This one had been built during the Energy Crisis, and was even tighter than the previous one. It was also being refurbished. It was filled with formaldehyde, printing ink, outgassing from plastics, furniture and carpets and fumes from paint. The resulting chemical load in the building made me extremely ill. I suffered from a continual headache. I couldn't think straight.
It was then that I realized just how sensitive I was to volatile organic compounds. If I had to fill the car with fuel the scent of the petrol (gasoline) knocked me out for a day. Oh, and printing ink would just send me off the deep end! If I got a flyer in my mailbox that had been freshly printed I couldn't go near it.
Some physical signs were now becoming visible to my colleagues. They remarked that, as soon as I walked in the building my neck and ears would turn red, and they could see me becoming more and more fatigued over the day.
I tried to get medical retirement. But it wasn't until a conference in 1997 that I was finally taken seriously. At the conference, I had to give a presentation in front of a group of people including my boss. I had rested all weekend in preparation for the event but nevertheless, when I got on stage, my boss could see me going gray. Because my cognitive problems had become so severe, the wrong words came out of my mouth. At that point my boss said, "Go home and don't come back!" I went on medical leave, worked a little from home and went to see more doctors. I was finally given a diagnosis of Multiple Chemical Sensitivity which was sufficient to allow me, a year later, to retire on medical grounds.
During the next two years I sat at home wearing an activated carbon respirator. I rarely went out. I was put on a few courses of tetracyclines for months at a time. I started to feel a little better. I started working from home, where I began a career in technical writing. However, trying to work was very stressful. I began to work part-time in a storeroom where I could still wear an activated carbon mask.
I was diagnosed with various inflammatory diseases. I had severe cases of irritable bowel syndrome (bloating, flatulence, diarrhea) helped somewhat by diet and supplements. I also suffered from plantar fasciitis, which caused tremendous sharp pains in my feet (advice: wear absorbent innersoles, rest feet). My back would also go out. It would knot up hard and all of a sudden, bam!, I would be unable to straighten my back (it would take 3-4 days of massages to bring it back into shape). I was also diagnosed with benign prostatitis (the urologist's only advice on how to treat the condition was to avoid coffee and other "irritants").
I also suffered from depression. I went through a stage where the thought of killing myself didn't seem like such a bad option. But when I entertained such thoughts I would also think, "This isn't me. This is my illness."
Before getting sick, I had felt extremely competent. But after the onset of my CFS, I felt completely incompetent and hardly had the motivation to do anything. I would continually start jobs and then not finish them. The situation drove my wife crazy.
Around the time I was given medical leave, I came across the Marshall Protocol while doing an Internet search. But my level of cognitive dysfunction was so high that I simply couldn't comprehend the basics of the treatment.
After the courses of tetracyclines offered me a bit of palliative relief, I looked at the Marshall Protocol again. When I read the information for the second time, I finally had enough sense to realize that it was going to work.
At that time I was also desperate. I didn't care if I had to endure difficult immunopathology (bacterial die-off) reactions on the MP. So I plunged full force into the MP. Benicar alone made me feel worse, probably because it activated my immune system so well that my body didn't even need antibiotics in order to begin to killing the bacteria at the heart of my illnesses.
When I started the MP antibiotics, I was like a bull at a gate. I ramped up their levels extremely quickly because I was so eager to get well. The MP study site moderators warned me against ramping my antibiotics in this fashion and they were right. I ended up dealing with a few periods where my immunopathology became very strong and difficult to tolerate because I was trying to take too many antibiotics too quickly.
Because I was so cognitively impaired, I also had trouble following the moderators' advice about how to reduce my level of immunopathology. Looking back, everything they said made so much sense, but at the time, I was confused. But I basically took everything that the nurse moderators said on faith and their guidance was correct. I wasn't long before I reached a point where I started to feel better.
I could talk for hours about how much better I feel. It's a truly remarkable feeling to be this healthy again.
I barely think about my symptoms despite the fact that I am taking the highest doses of the MP antibiotics. The constant, unrelenting "flu", fatigue, aches and pains and inflammatory problems are largely gone. I breathe through my nose!
My chemical sensitivities went away during my first months on the MP.
I also have my brain back. I've been able to take my technical writing job to a new level. Right now I have 200 different documents to write and have already completed 160 of them with ease. I can once again remember and understand relationships – how things hang together and exactly why things are placed in certain locations.
My mathematical abilities have returned as well. Just the other day, I helped one of the MP board moderators with a statistics problem.
My physical improvements are also tremendous. During the 1990s my doctor was able to gauge my metabolism by looking at my blood fatty acid content and the levels of some of my urinary metabolites. I was essentially told that my body was catabolic, that I was literally eating my own muscles. Now, I realize that the bacteria making me ill were taking all the good stuff and leaving me with nothing.
I was so weak that my strength and endurance was comparable to that of an 80-year-old. If I had to stand up, I was forced to push myself up with two hands. It was simply impossible to get up on my own.
But during my time on the MP, my muscle tone has returned. I can now see muscle definition in my arms and legs, despite the fact that I don't do much exercise (for so many years, exercise made me feel so much worse).
These days, I can walk as far as I want to. I just went on a road trip to visit several of my children. My wife and I drove 450 km up the Australian coast, then 330 km inland, then 850 km over to Hervey Bay.
There's a pier at Hervey Bay that's 900 meters long. We decided to walk to the end of the pier and I didn't even think about symptoms or fatigue. Then, just as we reached the end of the pier, it started to rain. So we power-walked rapidly all the way back. When I got back to the hotel I felt just fine. My first thought was, "All right, what do we want to do next?"
Before the MP when I went to the supermarket, it took a huge effort to drag myself from one end of the store to the other. Now, I walk with a spring in my step and am actually two inches taller because my renewed energy keeps me from slouching.
Two and one-half years ago, if I dropped a dollar coin, it was too much trouble to bend over and pick it up because my body would creak and groan under the effort. But just the other day I dropped a five-cent coin and simply bent down and picked it up. I didn't feel any symptoms at all.
I should also add that during the 1980s, I suffered from constant earaches. If I had to fly on an airplane, when landing the pressure change in the cabin would just about kill me. Now the earaches are a thing of the past. I can fly anywhere and my ears don't even pop!
My feet don't hurt. My back doesn't go out of whack. I no longer have benign prostatitis and the swelling there has gone down. I could almost feel the healing taking place in my prostate as I progressed through the MP. After taking my antibiotics, I would often feel a warm itchy sensation in the area – that type of itch that can't be scratched. I would feel occasional pains in the area depending on where I was in my antibiotics cycle. Then, gradually these reactions faded and the problem resolved.
Before the MP I seemed to have everything in the world wrong with me. It makes sense that the bacteria that cause inflammatory disease will lodge just about anywhere they can. Now, nearly all my old health problems, both minor and major have resolved.
I still find that on certain days of my antibiotics cycle I feel a little bit of pain in the glands in my neck (those glands are still visibly swollen). Sometimes I feel flickers of joint or muscle pain but it's nothing like it was before.
The antibiotics affect my vision as well. Depending on where I am in my antibiotics cycle, the focal length of my eye changes. I think that on some days there is more bacterial die-off and the resulting inflammation causes pressure on the eyeball, which affects its focal length. So I actually have two pairs of contacts with different strengths that I wear depending on my level of immunopathology. I'm sure that this fluctuation in my eyes will eventually stop as all the bacteria in the area are killed, and at that point my vision might actually improve, the way it has for others on the MP.
My symptoms of depression have improved tremendously. Today I feel competent, ambitious, and I complete my projects without a problem.
However during the early months on the MP, particularly when I was taking one of the phase 3 antibiotics, my depression was high as a result of immunopathology. At those points I would sometimes think, "I shouldn't be here, why am I doing this?" But later I would realize it was the medication talking, not me.
To some extent, symptoms of depression still come and go with my immunopathology, although they are much milder than before.
At around five months into the MP, I started to recognize that on average, I was feeling better than before I started the treatment. Before that point, I felt worse. But because I knew that feeling worse was a sign of bacterial die-off, I welcomed the exacerbation in symptoms. In fact, I actually rejoiced about the fact that my die-off symptoms were strong, which explains why I ramped my antibiotics so quickly.
Once I started feeling better at about the five-month mark, I was able to think more sanely about the way I was dosing my antibiotics and was able to proceed with the treatment at a more reasonable pace.
Yes. I wore a cap and sunglasses inside my office building so light was not a big issue. It didn't take long before I started to feel better on the Marshall Protocol. So the thought of how much worse I had felt before the MP caused me to feel grateful about the fact that I was improving and helped me get through difficult days.
I'm still working, mainly from home, but not concerned when I have to go to the office for meetings.
When I first started the MP, I became extremely sensitive to light. I started out wearing very dark 2% Noir sunglasses when I began taking Benicar and I went outside. During the first few days wearing the glasses felt like being in a solar eclipse.
But a week later I was wearing 10% Noirs inside (and 40% Noirs if the blinds and curtains were drawn, or it was dark) and I was avoiding going out during the day. I realized that if I took the glasses off, I had a strong rise in symptoms.
Today I don't even wear the 2% Noir glasses anymore. I wear my 10% Noirs (which have a lighter lens), and only when driving. Indoor lighting or light from the computer no longer bothers me.
I can tolerate normal sun exposure as long as I wear zinc oxide sunscreen. The sun certainly didn't bother me much on my last vacation. If I want to wash the car I just throw on a hat, long sleeves, and away I go…
The sun used to cause my eyes to become sore and swollen. This posed a problem since I wear hard contacts. But about nine months ago, this sun-induced swelling resolved. So I can now wear my contacts comfortably despite sun exposure.
On occasion I notice an increase in depression or some inflammation in my hips when I'm in the sun for a long time, but it now resolves quickly.
It was very difficult to get my doctor "on my side," so that he would continue to prescribe the necessary MP medications. When I first started the MP my doctor was skeptical of the treatment, largely because he really didn't understand it.
At first, I had to put a great emotional investment into persuading him to prescribe the medications. I had to write him a letter explaining why I wanted to do the treatment, which also clarified that I would not hold him responsible if anything went wrong. It was very draining.
Once my doctor realized that I was really improving thanks to the MP, and thus became much more accommodating about giving me my medicines, the feelings of insecurity about whether I could continue the treatment faded and I felt better emotionally.
Nevertheless, emotional symptoms were still difficult to manage during the early stages of the MP. Before the MP I often felt very emotionally labile and suffered from frequent mood swings. I had a very hard time dealing with any sort of crisis situation. Even if the situation wasn't life threatening, my adrenaline would go up and down and my body would feel as if it was. These emotional symptoms returned with my immunopathology, which was difficult. But like my others symptoms, they eventually faded to the point where I am now much more emotionally stable.
I also have regrets about not starting the MP earlier. These regrets are compounded by the fact that the rest of my family are also clearly affected with Th1 diseases that can also be cured by the MP. Yet at this point they seem unable to see what a difference the treatment will make in their lives. So I have to sit back and watch them get diagnosed with more and more things that are just nonsense.
Take it easy. Don't go at it too fast the way I did. If you ramp your antibiotics too quickly, you may reach a stage where you will become so physically or cognitively affected that you'll give up, and you really don't want to do that! So go easy and be patient. Make sure to keep in touch with people on the board so that they can help you manage your reactions during the first stages of treatment, because you may not be able to make sound decisions on your own.
I intend to stay on the MP for as long as I continue to feel better: I think there's still considerable room for improvement, but I don't really know what a completely healthy 60+ year old should feel like!
My focus will be to regain the things the disease took from me: not only health but also financial security, good family and social relationships, emotional wellbeing.
I've already been on a few trips overseas: I think that in the next ten years there will be many more. And I've still got all those unfinished jobs around the house….
31 Mar
At the lowest point in his life, this Canadian native was so sick that he could do nothing more then lie in a dark room, thinking about the fact that his body seemed to be on fire. His symptoms of twitching, swollen muscles and raging emotions were out of control. However, after a series of antibiotic regimens that finally led him to Autoimmunity Research Foundation's Marshall Protocol, he has recovered to the point where he feels like a kid in a candy store. Meet Ken L.
When I first started to suffer from symptoms of Post Treatment Lyme Disease Syndrome (PTLDS) I was living in South America. 2001 was the beginning of a gradual downhill slide. My feet started to become very sore, I became increasingly forgetful, and my balance was impaired. But it wasn't until May 1st of that year that I was suddenly struck with incredibly severe symptoms. That day, when I went into the office, I felt terrible. I told my co-worker "Something is very wrong with me", and he proceeded to take me to the hospital. My symptoms were terrifying . I had a crawling sensation that started in my hands and feet and crept up the back of my legs, until it finally reached my arms and the back of my head.
I saw an internist who thought I had Guillain-Barre Syndrome, an extremely debilitating disease that occurs when the nerves outside the brain become demyelinated. I was told I would have to spend three months on a respirator and that I would lose the ability to move my body at all for up to three months. Naturally I was terrified. The doctor told me that if I agreed to take large amounts of human immunoglobulin then I might be able to thwart development of the disease. Apparently this had curbed the onset of the illness for some of his patients in the past, although he had absolutely no idea why or how it worked.
So I was given $20,000 worth of IV immunoglobulin which, in the end, had absolutely no effect on my symptoms. I kept tingling and twitching. Later, to my utmost dismay, I learned that immunoglobulin is collected from the blood of thousands of people, and contains their antibodies. In hindsight, this seems to indicate that Guillain-Barre is an infection. At any rate, it made no difference in my treatment and I now realize that the immunoglobulin was probably contaminated with a great deal of L-form bacteria, bacteria that each of those thousands of people most likely harbored.
Although it had nothing to do with the immunoglobulin treatment, five days later my symptoms became slightly more subdued and I was allowed to leave the hospital. I flew back to Canada where I saw a series of doctors. The second doctor I saw told me I did not have Guillain-Barre, and was unable to explain my symptoms, yet I was still incredibly sick. I was so tired I could hardly move. I had developed fibromyalgia-like pain and joint pain. I also experienced massive body tremors. My short-term memory rapidly deteriorated and my emotions started to flare out of control. It was clear that my nervous system had become dysregulated and that my ability to process sensory input was all messed up. My gait was unsteady and I couldn't walk straight.
My wife was very shocked at my condition and didn't know what to make of it. The husband she once knew now seemed insane and was essentially bound to a wheelchair. But despite the physical torture that I was enduring, I had no visible symptoms. It didn't look as if there was anything wrong with me. I entered the hardest period of my life. I discovered that I could no longer tolerate bright lights or loud noise. Consequently, all I could do was lie alone, in the dark, inside a quiet room. It felt as if my entire body was on fire. I was extremely lonely and extremely scared. One time my calves spasmed so much (it looked as if worms were crawling under my skin) that my wife was able to recognize the symptom and gasped in horror. Yet she still failed for some time to understand the severity of my symptoms.
On some occasions I tried to force myself to accompany my wife on short excursions. One day we were at a store. I was leaning on a shopping cart for support when suddenly it felt as if somebody had kicked the back of my legs out. My knees buckled. I told my wife, "I need to get out of here…fast."
I went to see yet another doctor and was told I might have MS. His staff collected vial after vial of blood and spinal fluid until they literally ran out of tests to perform. Meanwhile, the crawling sensation, the twitching, the clonus (jerking back and forth), the pain, and my short term memory loss were worse than ever. My emotions were completely out of control. What I said no longer made any sense and I literally felt insane.
Eventually I was told that I didn't have MS. Nevertheless, I had already started investigating MS on the Internet and had gone to an MS Society meeting. Despite the fact that I was not officially diagnosed with MS, the people at the meeting had pretty much the same symptoms as I. I was horrified by the prognosis given to people with MS. We were told that for the rest of my life, I would have possible good days, bad days, and inevitably suffer from relapse after relapse.
I attended a lecture on MS and was appalled to find that the lady sitting next to me acted as if she had lost her mind, like she had cognitively flown off the radar. I tried to tell myself that I hadn't reached such a state, but when I left the meeting I realized that I couldn't remember where I was. I couldn't remember what city I was in. I couldn't remember if I lived in the city or not. Where was my home? Did I have a car? If so, where was it?
When I finally made it home, I began to look for information on the Internet with increased fervor. I was sure I had only weeks to live. Using the computer required all the energy I could muster. I staggered over to the machine and my hands would shake violently as I tried to use the mouse. Yet it was during those periods on the computer that I learned more about the disease that is often dubbed the "great imitator" – Post Treatment Lyme Disease Syndrome (PTLDS). It's called the "great imitator" because so many symptoms of PTLDS resemble those of other inflammatory diseases such as MS. Now that I understand the science behind the Marshall Protocol, the fact that PTLDS, MS, and many other inflammatory diseases have overlapping symptoms comes as no surprise. I understand that these diseases are all bacterial illnesses and that people with different diagnoses often share many of the same bacterial species. So I'm sure I did harbor many of the bacterial species that cause MS.
But as I read more information on PTLDS, I remembered with increasing clarity an event that had occurred nine years before, during a hike through the West Coast Trail on Vancouver Island. After the hiking trip, I had noticed an itchy rash on my stomach. I proceeded to pull a black "poppyseed" out of my belly button – what I now realize was the remnants of a tick. At the time I had dismissed the rash and moved on, yet two weeks later my knees had become very sore. It was also the beginning of symptoms of depression that would haunt me for the next nine years.
In the months that followed, the soreness in my knees got worse and my emotions became more unstable. My knee pain was so bad that I lost the ability to jog. Yet I tried to ignore the symptoms and push on with life as normally as possible. My girlfriend at the time worked for a supplement manufacturer and was selling one supplement that contained the herb sarsaparilla. I realize now that it's an anti-Lyme agent originally used to treat syphilis (another type of spirochete) and when I took it, it might actually have killed a small number of the bacteria making me ill. That's because after taking the supplement, I woke up one morning feeling as if I'd been hit by a truck. It could have been my first immunopathological or bacterial die-off reaction. In retrospect, I realize that feeling temporarily worse after taking the supplement might have actually been a sign of bacterial death. This is one of the invaluable lessons I have learned by understand the science behind the Marshall Protocol. Now I understand that "If you aint herxing, you ain't healing." In other words, experiencing immunopathology is a sign of healing.
Returning to the time nine years after the tick bite – the time when I was starting to learn more about PTLDS over the Internet – I realized that I once again had the same soreness in my knees and even the stomach rash that had started nine years earlier, after the tick bite. It assured me that the tick bite and my current symptoms were connected. The Canadian government claims that only about 20 cases of Lyme disease occur yearly in Canada and that ticks that carry the borrelia spirochete or L-form bacteria are few and far between. Yet my wife hiked the West Coast Trail almost one year after I did and also proceeded to develop PTLDS (she may also have picked up some of the L-form bacteria that I harbored after I got sick). Then, my son, his friend, another friend, his niece, and about half the people I know who hiked that Trail have since developed PTLDS. So I'd say the Canadian government's claims about the number of insects that carry L-form bacteria here in Canada is incredibly off.
Eventually I diagnosed myself with PTLDS disease, and in the process saved my life as the diagnosis was what eventually led me to find the MP.
I went to see a neurologist who refused to accept that I might have PTLDS because I didn't test positive for the bacterium Borrelia. I tried to tell him that the tests were no good because I had all the symptoms of the disease but he wouldn't listen. That experience was the beginning of the end of my relationship with the mainstream medical community. My next doctor again refused to treat me for PTLDS because of my negative test results but I was too weak and confused to fight back.
I soon learned that the average person with PTLDS goes to 21 doctors before getting treated. If that would have happened to me, I'd almost certainly have died. I was lucky enough that the 9th doctor I saw agreed to put me on high-dose antibiotics. I took a 12 hour road trip to see him in the USA. When I reached the hotel, my body was vibrating so badly from the exertion of the trip that my wife, who still wasn't convinced that I was truly ill, became alarmed again.
I had had to stop working and was on one year disability. We decided to move to the West where the weather was warmer and the taxes not as high. During that time, I started to develop symptoms of CFS as well. I slept for over 20 hours a day. It took us six months to move because I would literally pack one box of books, carry it up the stairs and into the garage, then need to go back to sleep for 24 hours.
Under the care of one of the few treating doctors in Canada, I did six more years of high-dose antibiotics. I did experience immunopathology (the herxheimer reaction) in response to taking many of them, but my symptoms never came close to resolving. Sometimes I would seem to reach a plateau, but then I would inevitably relapse. It seemed like the antibiotics were helping me somewhat, but taking them at high doses was like taking three steps forward and two steps backwards. When I had IV rocephin for three months, I started to feel like I was making no progress at all – it was three steps forward, three steps backwards. I think this pattern might have gone on forever if I hadn't found the Marshall Protocol. I learned from the MP site that beta-lactams will drive spirochetes into the stealthy L-form. This accounted for much of my backsliding.
I started to get involved in the Lyme community and became friends with some other local Lymies. I met many of them through the Canadian Lyme Disease Foundation (canlyme) which is a very helpful group. Sometimes we would go out to dinner and talk. During one dinner, I began to talk to a man who was on the Marshall Protocol. He was quite happy with his recovery thus far. After that point, every time we would see each other he would urge me to try the MP.
For a while I kept the MP in the back of my mind, but after realizing that my doctor was going to retire, I knew I had to plan for the future. I looked into the MP in greater detail and became very interested in what I learned. I decided it was definitely worth a try and found another doctor in my area who was already working with MP patients and was more than willing to put me – and my wife – on the treatment.
I should also mention that a year before starting the MP I suffered from angina that led to a pre-heart attack. Six months later I had open-heart surgery and triple bypass surgery. I was only 52. Now that Dr. Marshall's research has made it clear that cardiovascular disease is also an inflammatory disease that results from infection with L-form and biofilm bacteria, I'm not surprised that pathogens had also spread and infected my cardiovascular system. My blood pressure on the MP has dropped by over 30 points! I take no other medications.
A year before starting the MP, I inadvertently went on it in a modified form. I was given AltACE for my blood pressure. AltACE suppresses Angiotensin Converting Enzyme, which is the precursor to angiotensin. Since the MP's Benicar is an angitotensin receptor blocker, they are both involved in the angiotensin creation process. By happy coincidence I was also on a high dosage of one of the antibiotics used in the MP. My herx was spectacular and had me almost bedridden for four days. When I finally learned about the action of Benicar and recalled this incident, I needed little convincing that the MP was the way to go. I was searching for a new GP at this time and, when I mentioned that I had become very "sick" on AltACE and would no longer take it, he dismissed me immediately saying he would not treat a patient who would not take his meds.
Interestingly, two of the high-dose antibiotics that I had responded ro most positively in the previous six years were both held in high regard by the MP. This assured me that I would also respond well to the MP. I started the treatment at a pretty low point – I was still dealing with heart symptoms, PTLDS symptoms, and was very tired. My joint and fibro symptoms were also flaring quite a bit.
After starting Benicar and the MP antibiotics, I didn't notice much of an immunopathological reaction for the first two months. But I stuck with the treatment, and during month three, it seemed like the doors opened and a truck came though to flatten me. My immunopathology was strong and constant. As symptoms returned as a result of bacterial death, I once again became mentally unstable and quite anxiety-ridden. Because my immunopathology elevated my symptoms of anxiety, I had regular crises of faith about the MP – times when I would get nervous and doubt that the treatment was working. I would wonder, "Is this immunopathology, or am I just getting sicker?" In the end, I always realized I was on the right track, but the mental immunopathology did make accepting that reality difficult at times.
The heavy immunopathology continued for four months, but then one day I woke to find that about 80% of my symptoms had dissipated. The next day about 90% of my symptoms were gone. It was the most beautiful, wonderful experience of all time. From that point on, I have felt incredibly healthy and have not relapsed or gone backwards in any major way. My level of pain is minimal. I still get some minor immunopathology in my joints, teeth, and some fibro tender spots, but I would say I have 90+% of my life back. It's just unbelievable.
In August, during the time when I first I started to feel so much better, I read my first book just for pleasure in years. It was the Ascent of Man. I was able to remember everything in the book, toy with the topics in my mind, even dream about the book and remember minor details. When I finished the book, I cried. I never ever thought that my mind would feel and function this way again. All I can say is that my mind is BACK! My cognitive improvement is absolutely fantastic. It has almost completely allowed me to return to a different quality of life. My memory and cognitive function are almost back to 100%. This is such a change from the times when I would "wake up" in the middle of a sentence, wondering who was talking!
These days I only sleep about 8 hours a day with an occasional nap in the afternoon – the severe exhaustion is completely gone. I still have some fasciculations on my calves but it is quite rare. I am no longer sensitive to light or sound – I can turn up the radio on my truck and enjoy the music. In fact, my hearing itself has improved and my tinnitus is about three-quarters resolved.
My wife, who developed PTLDS a year after me, is also on the MP and experiencing many of the same improvements I am. We are also very happy with her progress.
I feel that the high-dose antibiotics did cause an immunopathological reaction at many points, yet I doubt they were consistently targeting any of my L-form bacteria or other stealth bacteria that are able to change form. I would never have fully recovered if I hadn't used the MP to target and kill these forms of bacteria which were definitely at the heart of my illness and running rampant while I was taking the high-dose antibiotics. Now that I understand the MP, the high-dose antibiotic approach also seems extremely unscientific. For example, the use of beta-lactam antibiotics seems quite obviously wrong, yet IV ceftriaxone (a beta-lactam antibiotic) is considered to be the Holy Grail of high-doise treatment.
The high-dose regimen seems to basically involve throwing antibiotics at a person and hoping they might have a positive effect – just hit or miss. In contrast, the science that forms the backbone of the MP is spot-on in my experience. Marshall's molecular modeling research confirms exactly how each of the pulsed, low-dose antibiotics used by the Treatment binds and blocks certain bacterial ribosomes. There is no question in my mind that the antibiotics are working. I also believe that the the MP antibiotic regimen is able to target L-form and biofilm bacteria in a way that high-dose antibiotics cannot.
Since I did experience immunopathology on the high-dose antibiotics, I think they did help me lower my bacterial load, but it was only by switching to the MP that I was able to consistently and thoroughly clean out the tremendous amount of L-form bacteria I harbored. All in all, my progress was very unsteady on the high-dose antibiotics and if I had to do everything again, I would definitely start the MP from the get-go.
Be patient during your immunopathology (herxes). Sometimes you may doubt the fact that your symptoms are the result of immunopathology, but as someone who battled those same doubts and has now largely recovered, I assure you that once you become symptomatic on the MP, your symptoms are almost certainly the result of your body killing bacteria. Have faith and ride through your herxes, but stay in touch with your doctor. It's sad, because some people drop out at the start of the MP because they can't get their minds around the idea that feeling bad after starting the treatment is not a sign that their disease is progressing but a sign that they are killing bacteria as expected. Sometimes people feel very bad after starting the MP but, since the rise in symptoms is due to immunopathology, it's actually a sign that the treatment is working TOO well (too many bacteria are being killed) rather than not working.
Now that I'm getting my life back, I feel like a kid in a candy store. I've just become a Grandpa and I feel confident that I will live to see my grandchildren graduate from high school and college – something I would never have dreamed possible before the MP. The lost opportunities in my career and the high-dose antibiotic therapy that I did for six years has cost me well over $100,000, so I'm ramping up my career again in order to become more financially stable. But I'm basically a life hog – I have the freedom to enjoy the rest of my life. I cry at sunsets, I'm gentler with people, and I'm also an activist. I want to do everything in my power to promote the Marshall Protocol and to help doctors understand the treatment and recommend it to their patients.
My son calls me the "Lyme Crusader." I'll literally stand in line at the grocery store and ask people if they know of anyone with inflammatory disease. Then I'll hand them a flyer with information about the MP. The treatment has worked so well for me that I can't just stand around and watch other people with chronic disease suffer when I know the MP can give them their lives back.
I am eternally grateful for Dr. Marshall and the others who have made such a difference in defeating these diseases.
15 Mar
At a very young age, Doreen's son Brendon began to suffer from symptoms of autism and other behavioral disorders. Over the years, he also began to suffer from CFS, obesity, and a "tremendous array" of other symptoms. Today, Doreen's entire family, including Brendon, are on Autoimmunity Research Foundation's Marshall Protocol. In the following interview, Doreen discusses the progress that Brendon, now 18, has made during Phase 1 of the treatment. Brendon's experience thus far suggests that he is already becoming a more social and outgoing individual, and that full recovery may well be on the horizon.
Brendon exhibited the subtle signs of autism at a very young age. I didn't realize it at the time, but looking back, even as an infant he was socially indifferent–- he did express emotion, but only if we went out of our way to over-emphasize cues. A photographer waving around stuffed animals and talking loudly and actively in order to elicit a smile would get him wildly laughing. Otherwise, he really didn't ever giggle or grin. He did not actively explore faces and was uninterested in taking his turn sitting on my lap at reading time. Whereas the other children in my daycare clambered to hear favorite books over and over and especially enjoyed the "audience participation" pieces they knew were coming up, he did not have the patience to sit through a book if he had already heard it.
As a toddler, he started to develop allergies. He couldn't and still can't tolerate gum thickeners. I remember taking him to Dairy Queen, which thickens all their ice cream products with xanthan or guar gum. Afterwards he felt terrible and had his first clear-cut display of diet-triggered disordered behavior. Soon after, we found that he was also allergic to beet sugar, any food coloring, aspartame, corn, wheat and dairy. A great deal of trouble was avoided when we were successful at removing them from his diet. I used to reassure his teachers by joking that there were no dangerous side effects to his allergy, but should they make a mistake… don't call me!
By this time, he had been tentatively diagnosed with ADHD, and the removal of food allergens went a long way towards removing the hyperactivity piece. Dust allergies kept us busy, but constant cleaning offered a bonus of decreased aggression, which is indeed often linked to dust allergy in children. The allergies were also the first indication that there was something wrong with his immune system. After a while, they became less of a problem and he was able to eat a more extensive diet again, although he still can't fully tolerate dairy and wheat or gums.
But we didn't reap the benefits of having overcome this serious health problem for long. Like playing Whack-a-mole, other problems constantly cropped up, with escalating seriousness and intensity, to consume a great deal of parental sleep and stomach acid. We spent a year on vision therapy. Patches of severely dry skin on his wrists turned out to be a symptom of hypothyroidism. Extreme morning fatigue was found to be related to adrenal insufficiency. He had to be treated frequently for Candida overgrowth.
In the middle of all this, we actually had a "normal", semi-critical medical problem. A sudden bout of urine incontinence led us, thankfully, to surgical repair of a dangerous stage IV ureteral reflux, in which urine backs up into the kidneys, through damaged valves. The surgery removed the risk of life-threatening acute blood infection, but failed to save the kidney, which had been damaged by the years of backflow.
The problem of hyperactivity was gradually replaced with insidious fatigue. And his weight continued to steadily climb, despite all of our efforts. It went up, and up, and up. We did all we could to keep track of what he ate and make sure he ate a very healthy diet, but even so, his weight seemed to increase irrespective of our efforts.
Meanwhile, his behavior problems were escalating. He suffered from frustration intolerance and had episodes of explosive rage. He was diagnosed with depression and severe anxiety. Yet as his mother I was frequently told that he was fine; that I was just anxious and should try to calm down. But my husband and I could tell just how depressed, anxious and stressed he was. When he'd come home from school, we could tell he was using everything in his power just to hold himself together. He would come home in tears, desperately exhausted and just crash.
Another lingering and difficult problem finally brought us to the right practitioners and a definitive diagnosis of autism. Brendon suffered from severe constipation and bouts of intestinal pain that could not be relieved, with gradually escalating encopresis, or leakage from the bowel. Obviously this problem made going to school a terrible experience.
Our pediatrician didn't know how to help. At one point he suggested Miralax – a powerful laxative that would force his intestines to eliminate their contents at specific times. But the drug created dependency, as it destroys muscle tone and is only properly used as a final recourse. I realized that if he started it, he would probably be taking it for his whole life. I turned it down.
We saw an integrative health doctor who immediately suspected that Brendon had dyspiosis – a condition in which the intestines do not have the proper composition of bacteria. And he said a curious thing: people on the autistic spectrum often suffer from encopresis. Autistic spectrum? I had never heard such a term.
The doctor ran a nutrition panel on Brendon and found elevation of a marker for brain inflammation and toxins produced by bacteria in the bowel. In addition, his triglycerides were extremely high. High triglycerides are a clear marker of inflammation, which, in turn, can be caused by bacterial infection. We used an herbal remedy to reduce bacteria in Brendon's intestines, which thankfully eliminated the embarrassing and socially isolating encopresis. The markers also returned to normal. Today we realize that he was also infected with a great number of the L-form bacteria that cause chronic inflammatory disease.
A trip to a local clinic specializing in children's behavioral health confirmed the diagnosis of autism. At the clinic he was diagnosed with Aspergers syndrome and PPD – Pervasive Development Disorder. He definitely was several years behind in development – he was eleven years old but had the maturity of an eight year old and the social skills of a five year old.
At this point in time, Brendon still had a tremendous heap of problems but it was becoming clear that they were all related to a central issue and that we might just have some power of management over them. Later, with the Marshall Protocol, we would set out with the hope to actually clear up this central problem, but for now we attempted to create some breathing room for Brendon so that he could grow up happy and independent. Vitamin B6 and glycine, identified as deficient in the nutrition panel, helped with his explosive episodes. Lots of autistic kids find relief from heavy metal chelation, but that therapy did very little for Brendon. He did, however, respond dramatically to weekly glutathione IVs. The purpose of this therapy is to reduce levels of toxins and metabolic waste built up in the body. Even from the first couple of IVs it was like turning on the light for Brendon. In hindsight and in comparison to today's IP symptoms, I would say that the glutathione substantially reduced the brain fog piece.
There were some setbacks initially as we attempted to respond to the autism and ADHD diagnoses from the Alexander Center. Strattera, used to treat ADD, seemed at first to be very beneficial. But then four months later he came to me saying that something felt wrong when he took his pills. Soon after, he became completely emotionally destabilized. He was agitated, angry, weepy, and had explosive mood swings. His depression was terrible. He couldn't stand to be around other people. It took us a long time to bring his symptoms back to a level where they were somewhat under control.
In the meantime, I continued to learn more about autism. Patients with autism suffer from a deficit of the neurological pathways that link the frontal cortex and the limbic system. So Brendon was able to experience normal emotions and was able to develop intellectually, but he could simply not connect the two systems. Where there should have been a superhighway to connect his two systems, it seemed as if there was nothing there.
For example, Brendon could go to school and learn about grammar in English class. But if his teacher asked him to write an essay on a moment when he felt proud, it would seem like an impossibly difficult task because autistic children fail to lay down episodic memory. He had surely felt proud at times, but his brain had failed to connect the feeling to an actual event. For example, Brendon could remember spending time with others but had no memory of whether, when they were together, he had a good time or not.
I read work by an autism specialist named Dr. Gutstein who believes that the brain is more flexible than we give it credit for and that it is possible to re-teach children with autism some of the cues they missed in childhood. He believes that the neural pathways can be strengthened and reinforced.
So we started a therapy based on Dr. Gutstein's Relationship Development Intervention. The therapy is based on research of typical babies, identifying over 2,000 developmental steps that allow them to progress to normal adulthood. The first step is just playing a game in order to get an autistic child to enjoy looking at his mother's face. Gutstein believes that by over-exaggerating these cues to autistic children, even later in life, they can not only pick up some of the cues they missed, but find the joy in human relationships. We tried this with Brendon and saw further gains in his behavior.
Although Brendon was making some gains based on the interventions we had in place, we knew we had to be open for other solutions. If anything, his CFS or his obesity was going to take him down soon anyway.
We actually learned about the Marshall Protocol in our search to resolve a crisis for another member of the family. Brendon's older sister Lauren was dealing with an extremely severe case of CFS. She had crashed big after her junior year of high school and had been completely bedridden ever since. My first exposure to the Marshall Protocol came in reading an interview with Dr. Marshall on the website ImmuneSupport.com. The science made of lot of sense; my daughter had hit a low point anyway and after a year of I finally thought, "What do we have to lose, let's give it a try!"
I was a little bit terrified, but I was used to being different – I was used to seeking out different solutions for health, looking for doctors with alternative viewpoints or novel treatment ideas.
I was worried that our doctor, who had now been working with us for several years, would not be willing to put Lauren on the MP. But when I asked him about the treatment, he told me he already had 12 other MP patients. I was overjoyed. In fact, he told me that he thought the MP would be good for our entire family, as my husband suffers from fibromyalgia and psoriasis and I have chest pain and fatigue that was finally diagnosed as CFS.
All four of us got our vitamin D metabolites tested and, as expected, all of us had levels of the active form of vitamin D (1,25-D) that were above normal range. High 1,25-D is a sign of inflammation and the presence of L-form bacteria, so this was an indication that the treatment should work for all of us.
Lauren was the most acutely ill among us so she started the treatment first and experienced immunopathology right away. Soon after my husband started the MP. Brendon began the MP a few months later, and I was the last to start. I think it was very important that we phased each person in gradually over a one year time period. With each new family member that started the MP, we became increasingly skilled at starting and understanding the treatment. In my opinion, the first bit of the treatment is the hardest – each person must learn how sensitive they are to light, how strong their bacterial die-off reaction will be, and subsequently how much they will have to adjust their lifestyle in order to get well.
Well, the house isn't always perfectly clean because we're all dealing with immunopathology, but we're all on our way to getting our health back together. We figured, "As long as we're covering the windows and blocking light in the house, we might as well all do this at the same time."
Brendon had symptoms of immunopathology even before we started Benicar, when we removed Vitamin D from his diet in anticipation of starting the MP. He was nauseated, tired and out sick a lot. We actually had to feed him eggs deliberately, just to get through the end of the school year! Once Benicar was begun, those symptoms smoothed out and he began to follow the diet in earnest.
Although he did not experience photosensitivity at first, by the end of the summer on phase 1, with minocycline only, Brendon was experiencing intermittent distressing symptoms. He felt a whole-body flush, with increased heart rate after taking his mino. One night he stood up too fast and woke up several seconds later with his face in the carpet and a sore nose.
He was moved to a modified phase 1 just before the start of school and began to thrive. He became more social and he was less stressed. He really mellowed out. He had been too fatigued and overwhelmed to attend afterschool activities for the past two years, including Boy Scouts, but late in the summer he declared a goal to finish his Eagle Scout rank. This involved working out in the community to find and carry out a project, with interactions and activity with others which he handled fine. He demonstrated self-motivation and confidence in his Eagle work while maintaining B+ level work at school. It seemed as if his brain had a lot more energy to engage with people; as if it wasn't so oppressed. This was his first "plateau."
But all good things come to an end and so did this. The first few weeks of school he didn't wear his hat and glasses. He didn't need to. But then the expected symptom of photosensitivity finally kicked in. At first he felt bad, and was still trying to make it to school. Unfortunately, our local school has large windows. Each teacher turned off the bank of lights over his part of the room. He wore sunscreen and dark glasses, which made it hard to see to work all the time. Brendon began to feel sick even with glasses and long sleeve sun-blocking shirts. He told us that he could feel the lights and noise at school pressing down on him. At home he would shut the lights off completely. He managed a few more weeks at school, then fell apart.
We decided that he should no longer attend school. It was a good decision, because over the next four months, as his body started to kill the bacteria, he felt quite ill and he was very light sensitive. He could barely think. We dialed back the levels of antibiotics substantially and increased his Benicar to every 4 hours in order to get back to a tolerable position. Brendon slept well over 12 hours every day during this period.
Then, after this period of difficult immunopathology, he hit a second plateau. It started with some interesting symptoms – his heart started racing and his pulse went up. This eventually stabilized but he remained energetic! He couldn't settle down. He was alert and awake in the morning, the way a healthy adolescent should be. This improvement has persisted and we feel that his body has finally been able to reset his natural circadian rhythm. He used to be extremely sluggish in the morning – probably due to the fact that his cortisol was dysregulated and didn't peak as it should in the early hours of the day.
His ability to engage with other people has improved once again as it did when he was at the first plateau. Whereas before he used to move directly from his bed to his computer without talking to the rest of us, now he'll stop to talk to the rest of us, actually engaging and initiating conversation. The other day, he even went over to his Dad and gave him a big hug – initiating the contact himself.
This second plateau lasted two weeks or so, and I noticed some other improvements during this time. Brendon asked to drive on his permit a few times. He explained that he no longer felt impulsive and out of control. He told me that these feelings were the reason he had been refusing to practice driving over the past year. Just the fact that he could express such self-examination is an improvement! He drove well, and with calm confidence.
Brendon is also able to handle multiple demands or instructions better. Early in life he would climb under a desk or, as he grew older, put his hands over his ears and say "Oh, go away! You're confusing me!" But during these weeks I could remind him to take his pills AND to bring down his lunch dishes in the same breath.
I was overjoyed when he came up to me and asked if he could go with me to attend a political caucus. He said, "Mom, I want to go with you!" For any 18 year old to say that, let alone a child who used to avoid new situations, and especially new and social situations, I was really amazed at his initiative. Once we got to the caucus he cast his vote like everyone else. I was proud.
Brendon is a member of some groups that get together to play computer and card games, etc. He seldom, if ever, initiated conversation unrelated to the activity at hand. But now he is more engaged and he approaches other kids to start conversations, showing interest in people and not just the activity they are doing together. He wants to talk. I cannot tell you what a HUGE difference this is from the way he was before starting the MP. He even has a girlfriend!
We know that he has to move forward and use many other combinations of antibiotics before he fully recovers. We are fully aware that these antibiotics will probably cause immunopathology that will temporarily bring back many of his symptoms again. But we are already extremely impressed by the gains he has made so far, at just a little over six months into the MP. We are also optimistic about his ability to increase his antibiotics. At first he had trouble tolerating a second antibiotic, but after some tough immunopathology, it was as if he had made it over a huge mountain. Since that time he has been able to increase his antibiotics at a regular rate and still reap the improvements mentioned above.
I would pass on advice that I received from a counselor at Brendon's school. She told me that it's perfectly okay to put school on hold in order to address health issues. No matter what other people say, parents need to stand firm in allowing their child to have their physical health and emotional needs met as a priority before addressing educational needs. Furthermore, as they start to recover, it's essential that we focus on allowing them to have a social life before forcing them to deal with the stress of school. Essentially social life comes first and school second. If a child is in the process of recovering from an illness, it's not fair to say, "Oh, well if you found the energy to go out with friends then you should be able to make it school." They need to form social ties and make friends. They can always catch up math and reading later in life.
Sure. I'll put him on the phone.
Brendon: I feel a lot more stable, a lot more social. I can't really recognize my autistic tendencies but I'm told they're better. Benicar has been a big help.
I also had a migraine so today my back hurts. But it's an illness where the location of my pain changes on a regular basis. So every day it's like rolling the fortune wheel of torture.
Well, when you are grumpy or not feeling well, nobody asks, "Hey! What's eating you?"
Yes, I'm pretty positive and I keep up hope. Sometimes when the immunopathology is strong, I lose sight of where I'm headed and I have to remind myself that that this will work, that ironically pain is a good thing because it means bacteria are dying.
Back on the phone with Doreen…
I know, we are so happy, he's really made huge progress. It's great!
Our whole family has just hit the one year MP mark, since Lauren officially started the treatment in February, 2007, and we all phased in after her. Dad continues to work, including extensive travel. It's a struggle, but he is progressing in spite of the increased symptoms. Everyone in the family had to move to a modified phase 2 for cardiac and/or breathing symptoms, but we are now beginning to phase each of us into phase 2, starting with mom, next week!
Lauren has shown the most significant advances in health…in one year she has gone from 1 hour/day out of bed, with no energy for school or people, to 6-7 hours of sustained activity, including making her own meals, light housework, and 9 credit hours of online classes through the local college. She will graduate from high school this spring, just shy of her 21st birthday, and we are planning a trip to London to celebrate!
2 Mar
Several years ago this finance lawyer and mother of two was so debilitated both physically and mentally that she thought it unlikely that she'd live to see her children go to high school. Today, after five years on Autoimmunity Research Foundation's Marshall Protocol, almost all of her symptoms have resolved and she has rejoined the world – picking up many of her old activities including tennis lessons. Meet JST.
During my teenage years but it took another twenty years or so before I was to become chronically ill and debilitated.
While I was at high school I had odd bouts of ill health including chronic tonsillitis and sinusitis. In 1979, while at university, I suffered an episode of sudden fatigue and paralysis in both legs which disabled me for about three weeks. I was not seen by a specialist and it was concluded that I was suffering from "hysteria."
I was generally healthy until the early 90s when for no apparent reason I began to suffer periods of intermittent fatigue, difficulty in articulating myself, and a collection of seemingly unconnected and disparate symptoms like mild asthma, abdominal pain, weight loss, amenorrhea, malaise, and dizziness. I had an absorbing and challenging professional job, but found it increasingly difficult to perform my work. During my first pregnancy most of my symptoms surprisingly resolved and I thought I had recovered.[1] After a severe chest infection in 1993 the intermittent fatigue became unrelenting. I resigned from my job and did part-time pro-bono work while awaiting the birth of my second child. To my dismay, I had to give even that work up when I found myself completely out of breath just walking to the station.
My symptoms improved somewhat again during my second pregnancy but I began to feel very ill indeed post partum. I developed a host of new symptoms – severe photosensitivity, compression-like headaches, tinnitus, changes in proprioreception, blackouts, hair loss, mild fever, night sweats, anxiety, edema, abdominal pain and discomfort, and, swollen lymph nodes in the neck. In 1997, I decided to consult a general hospital and an ultrasound scan revealed enlarged abdominal lymph nodes. Sarcoidosis was diagnosed on the basis of a cervical lymph node biopsy and confirmed via chest X-ray, BAL (Bronchoalveolar lavage), lung biopsies and a thoracic CT scan. Because my Angiotensin Converting Enzyme assay (commonly used as a marker of Sarcoid inflammation) was only slightly above "normal" and I did not have overt organ damage, the pulmonologist whose care I was under decided to take a "wait and see" approach.
Determined to try and preserve as much function as possible, I walked everywhere but over the next couple of years became increasingly short of breath, the fatigue grew even more profound, and swollen lymph nodes and inflamed joints kept me in chronic low grade pain. Sitting crippled by fatigue in an armchair late in the afternoon while my infant children ran riot around me, I would often wonder why I was not out sailing the world single-handed or climbing mountains like the anecdotal super-patients of the sarcoidosis specialist's home pages.
During 1999 my headache became more prominent; I developed problems with my sense of balance and position and experienced loss of motor function and peripheral sensation in my arms and legs. I first noticed this in my hands which became very weak and clumsy. I dropped and broke many things. Eventually my fingers became too weak to even operate an ATM key pad. I lost my opposable thumbs so could not do simple things like get change out of my purse.
My legs became leaden and clumsy and I began to trip over my feet. Myasthenia and spasticity obliged me to use elbow crutches or a cane to walk most of the time. To explain how this feels to someone who has not experienced it, imagine having both legs in plaster casts to the thighs with one's knees cast at 140 degrees. Life and my legs were a drag.
What JST looked like without the palsy. She gets some palsy symptoms when very tired. Rings under her eyes come back when she takes one of the phase III antibiotics, although the rings are getting lighter as time goes by.Later in 1999 I was admitted to hospital with severe muscular weakness and spasticity in all four limbs barely able to move from the neck down. MR imaging failed to reveal any gross pathology but a diagnosis of sarcoid inflammation of the spinal cord was made via clinical examination. I spent a total of five weeks in hospital, but worse still was being separated from my children for nearly three months as they had to be sent back to New Zealand. I declined methylprednisolone pulse therapy. After a poor response to 10mg/day, I agreed to 50mg/day of the oral corticosteroid prednisolone. After discharge I was kept on varying dosages of prednisolone for 3 years. Prognosis for Sarcoidosis of spinal cord at the time was that 70% patients "deteriorated". I made arrangements with my lawyers in anticipation that I too would deteriorate, lose cognitive function, and be unlikely to live to see my children go to high school.
Short term memory problems and language difficulties, particularly with Japanese – which is a language I acquired as an adult – made life unbearable. I struggled to make myself understood at the most elementary level and would be misunderstood or treated like a child because I was unable to articulate my thoughts or feelings spontaneously. This was so humiliating that I began to consciously avoid interacting with people. I was completely overwhelmed trying to look after two young children and constantly anxious and very short tempered. Varying doses of the oral steroids left me disconnected and confused. I would do things like turn up at the supermarket counter with insufficient money in my purse, make terrible mistakes in ordering things and was forever losing important documents. Opportune infections caused a continuum of relapses that I never fully recovered from. I lived one day at a time not knowing whether when I got out of bed in the morning I would be able to walk or use my arms.
It was impossible to commit to anything more than a few hours ahead. Central Tokyo, with its aggressive traffic and poor infrastructure, was a nightmare for a disabled person. I spent most of the day asleep but no matter how much I slept it never relieved the fatigue. As my deterioration was slow and subtle those around me didn't really notice it. It was only when I went back to New Zealand and my mother gasped when she met me at the airport that I realized how much I had changed.
For three years I half lived through a nightmare roller coaster of exacerbations and short lived partial remissions. Every step I made was a conscious effort and it seemed that all my concentration and energy went into fighting intransigent muscles. The side effects of prednisolone were horrible but every attempt to wean from it failed. I was hirsute, bloated, disconnected, and somewhere between ornery and psychotic most of the time. Ever more crippled by fatigue and cognitive dysfunction I withdrew completely and seldom left the house. The toll on my family was immense. It was as if I became the insect of Kafka's metamorphosis.
I seldom think about them.
My spinal cord inflammation has resolved to the extent that I can take tennis coaching twice a week. I have residual spasticity but it is barely discernable except to the trained eye. This is good evidence I believe, of the ability of the CNS to heal. Despite being less supple I feel as if I can run and hit the ball way better and stronger than I did fifteen years ago. I concede though that this may be related in part to having replaced my wooden racquet with a state-of-the art carbon fibre one! The aerobic exercise seems to improve my energy levels and rather than causing me to become fatigued upon exertion; I feel better for it – something that would have been unimaginable even a couple of years ago. Recently I was also quite astonished when someone remarked on the muscle tone in my arms.
Last February I took my open water scuba divers license again after a gap of 20 years and this past New Year's Day had the time of my life sailing a Laser.
I have rejoined the world cognitively and socially. I am able to read and write again. Once a month I attend a group to read Shakespeare which has been a lot of fun. Last year I surprised a professional association of which I had been an inaugural member in the early 1990s by rejoining after 12 years. Although I did post graduate legal studies in Japanese, disuse of the language during my illness completely eroded my confidence in using it. Recently, I gained the courage to go back to language school for a stringent refresher course. This has enabled me to begin writing in Japanese and feel comfortable about interacting with people again.
I need to be a little careful about conserving my energy as I still get a little tired after taking my medication. Sometimes a recrudescence of symptoms in response to treatment will make me feel unwell for a day or so but these are nothing like the massive IP episodes of the early days. I am hopeful that they will soon resolve and I shall be able to take on professional commitments again.
That is a difficult question. Like everybody else my age, I would like to be a 20 year old again. As there are few precedents for a full recovery from chronic inflammatory disease, I am really having to define my own clinical endpoints. My symptoms fluctuate between 75% and 95% of normal (as compared to between 25% and 75% for the preceding 9 years). My neurological deficits are minimal and it is over a year since I have needed to use a walking aid for any reason. That is a huge milestone for me. I can run to tennis in the mornings, do a solid hour and half coaching then walk back. My bloodwork is very good now barring a couple of anomalies that indicate residual but resolving infection. ACE is down to 15.5 U/l from a peak of 35.6 U/l. Chest x-ray is normal. Lung function tests are completely normal (% predicted: VC140%; FVC141%; FEV1.0 124%;DLCO 108%) with room for further improvement. ECG which showed an ST depression prior to ARB therapy is now normal other than a slight shortening of the PR interval; I no longer suffer from heat failure symptoms (orthopnea, syncope, lightheadedness, exercise intolerance) or arrhythmia. Myasthenia as evidenced by a muscle waning decrement of 30% under Repetitive Nerve Stimulation has resolved. Lateral L2-L4 BMD (bone mineral density) has gone up from a T score of -2.47 (09/00) to -1.09 (04/07) and Z score from -2.11(09/00) to -0.23 (04/07) which I think is pretty good given that the 2007 tests were done before I began high impact sports again. For the first time in my life, I no longer have any nasal congestion and an irritating nasal polyp I had for 15 years has disappeared. Headaches are a thing of the past. I still get the odd bout of fatigue but it is seldom for long. I am generally able to articulate myself in both English and Japanese, I enjoy reading and my short term memory has improved significantly. Most fascinatingly and delightfully I am gradually regaining the memories of people and events from the ten or so years prior to CNS involvement that appeared to have been lost.
In time, I hope to be able to proclaim of sarcoidosis, as did fellow New Zealander, the late Sir Edmund Hillary after conquering Mt. Everest… that I have "knocked the bastard off!"
My immunopathology (bacterial die-off reaction) was severe at times and hard to manage psychologically. It typically involved sudden severe weakness and loss of motor function, sometimes in a single limb (I once had to finish a bowl of noodles using chopsticks in my left hand!), in opposing limbs and occasionally in all four limbs rendering me bed-bound until it subsided.
This was particularly so while the MP antibiotic regimen was being developed. There were no set dosages then and the necessity for maintaining sub-inhibitory concentrations on a pulsed schedule was not yet fully understood. I moreover did not have the benefit of Olmesartan in the early stages (it was not yet available in Japan) so had a very difficult time managing the immunopathology (IP). However, after I began suffering from symptoms indicating cardiac inflammation, I was prescribed an ARB called Valsartan. To my amazement, around five days after starting it, the symptoms all but resolved. Not quite believing that Valsartan could have had such an effect, I decided to take a self-appointed "holiday" from the drug a couple of weeks later. Ten hours after missing my dose, the symptoms returned in full force. I resumed the Valsartan and to my relief the symptoms began to resolve some hours later. This convinced me of the phenomenal power of ARBs to alleviate inflammation and without any side effects. I never looked back. Soon after, I was finally able to switch from Valsartan to Benicar. I noticed even more improvement once on Benicar and what are now the standard MP antibiotics.
For the first year and a half on the MP however, I had quite a rocky time. I experienced an endless and incoherent parade of old and new symptoms and what seemed like no real change. A small increase in inflammation in the central nervous system is capable of deranging the function in very different areas of the body so even when transient it can be quite disconcerting. But about nine months into MP Phase II, I suddenly began to notice slight improvements in function and from there on my IP became more stable and my gains sustained.
To date however, no matter how severe my IP, I have been able to manage it by adjusting the timing, amount or constitution of my antibiotic therapy and by increasing my Benicar dosing. This has necessitated some very detailed and timely advice from the MP staff and a huge dose of courage at times but it has invariably worked.
Believing that I was getting better. I had never really thought of myself as "sick," just a normally healthy person with some irritating problems that I needed to get rid of and quickly. I wanted a magic bullet which the MP is not. It takes time and you have to persevere.
In 2002 I had a three-month remission following a course of an antibiotic prescribed for an opportune infection. As this was the second time I had noticed an improvement in my condition after a short course of an antibiotic, I decided to investigate whether there was any connection between my perceived remission and the etiology of sarcoidosis. I typed in "Sarcoidosis" and "remission" and found Sarcinfo.com – the precursor website to what is now the Marshall Protocol study site.
When I received the diagnosis of sarcoidosis, my father who is a pathologist, had remarked to me that tuberculosis, leprosy, and other granulomatous diseases looked quite similar to sarcoidosis under the microscope so, it was quite conceivable that Sarcoidosis also had an infectious etiology. That insight remained my guiding light. I had already observed two brief remissions after taking antibiotics for opportune infections and was sure that there was a correlation. The role of the vitamin D receptor in chronic inflammation was a great revelation however. While in hospital, I had begun to think that the inexplicable and sometimes severe fluctuations in my symptoms might be hormonal. I even bought a monograph about hormones, however Vitamin D was mentioned only in relation to its role in calcium metabolism so I didn't make the connection. Later, when I read the Marshalls' "Angiotensin Hypothesis," it was like finding the missing piece to a 1000-piece jigsaw puzzle.[2]
I had my 1-25-D/25-D ratio measured and it came out at 4:1 (normally the ratio should be around 1:1.1). Not only did I have an excess of this chemical in my body, it was a steroid hormone that was interfering with the activity of my immune system. Finally I had found a plausible explanation for many of my bizarre and often transient symptoms. My doctor was also persuaded on the basis of my D metabolite test results to prescribe the MP prototype antibiotic therapy on the condition that I persevere with any antibiotic chosen for a minimum of three months.
I felt like an intrepid explorer. I was strongly convinced of the science behind the MP and always kept in mind Pasteur's dilemma when he decided to treat Joseph Meister for rabies. I had two young children who needed a mother. There was a small chance that the medications might adversely affect me, however the alternative was a half of a life on steroids and a cornucopia of toxic palliative drugs that would do nothing to alter the course of the disease.
Although I had little or no access to information in Japan, the support I received through Sarcinfo and the extraordinary generosity and vision of the American people in making the website PubMed freely available online enabled me to become the arbiter of my own destiny. I was able to make informed choices and to participate in an international clinical trial through the Marshall Protocol study site that I would never otherwise have been considered for. I was more than happy to participate in this experiment, if, as a result, even one person could be spared the misery I had endured.
As the protocol developed and positive responses to the therapy filtered in however, the magnitude of Trevor Marshall's vision became apparent. Not just a few sarcoidosis patients but many, many patients suffering from a wide range of chronic diseases stood to benefit from the therapy. The feeling was one of exhilaration.
During my early days on the MP, I was extremely sensitive to light and had frequent transient black-outs while working under the fluorescent lighting of my kitchen bench. When the blackouts began to occur while I was driving, I stopped driving. Flickering light from any source would make me anxious and irritable and I always wore sunglasses outside because I found looking into sunlight so painful.
Interestingly, I always felt very peaceful when wearing goggles while skiing and it wasn't until I first bought a pair of NoIR glasses that I understood why. The relief they provided, and still provide is immense. I have largely lost my photosensitivity but still wear the glasses outside as a matter of habit and precaution. Today patients on the MP are required to block light with NoIR glasses until photosensitivity subsides.
My physicians have been very supportive. The prognosis for sarcoidosis of the central nervous system is not very good so I would say that my progress has been greeted with "cautious optimism." One has to remember that neurologists are not particularly used to seeing patients go from crutches to the tennis court.
Think Big!
Be knowledgeable and courageous about beginning the MP. My life would have been very different had the MP been available ten years ago. I "lost" what should have been the best ten years of my life.
Read. Understand your clinical condition and the science underpinning the MP as best you can so that you can understand how a temporary exacerbation of symptoms appearing as IP might affect you. Keep good records. I keep two Excel databases:
1. a daily "Drugs vs Symptoms daily monitor"
2. blood test results which I graph to show trends
I keep copies of all diagnostic tests undergone and (no matter how unpleasant this may seem) get people to take digital photographs and occasionally videos of my symptoms.
To return to my professional work very soon I hope.
To be able to follow my dreams again – "Last seen sailing an RS800"?
Not to need another doctor's appointment for the next 35 years.
17 Feb
In 2000, this former RN was a "chronic mess" – so ill that her life was an endless series of painful and debilitating relapses. Today, after three and a half years on Autoimmunity Research Foundation's Marshall Protocol she's bid goodbye to most of her symptoms and is out and about again – taking water aerobics classes and volunteering at the local nature preserve. Meet Melinda Stiles.
I was exposed to L-form bacteria at an early age. During the 1970s, I was a practicing Registered Nurse in Connecticut, first at Yale University, then at Middletown Memorial. At the time, a number of young boys were admitted to our hospital with strange muscular, arthritic complaints, swollen joints, and fever of unknown origin. After being given high doses of antibiotics, one boy even developed a heart block. I was in the ICCU and assisted with the temporary pacemaker before he was transferred to Yale Medical for diagnosis. We were following the prognosis of these young men with interest at the time. Most of the cases were originating around the town of Old Lyme, Connecticut. Later, scientists at Yale would group the symptoms these boys presented under the label of "Lyme disease" – inspired, of course, by the name of the town in which the boys first became sick.
Today, based on biomedical researcher Trevor Marshall's work, we understand that these boys, who were working in close contact, were passing around a tremendous amount of cell wall deficient pathogens known as L-form bacteria. The fact that L-form bacteria interfere with immune function made it easy for them to acquire the bacterial species Borellia as a co-infection. These boys almost certainly passed some of their L-form bacteria to me.
Before that time, during the year after graduating from Florida State nursing school, I contracted hepatitis B after being exposed by an incident in Beth Israel hospital in Boston. This was a severe case and prevented me from working for one year. It also seemed to bring on problems with my blood sugar regulation, as I suffered from hypoglycemia. It also increased my symptoms of Reynaud's syndrome where my fingers would get numb and blanched when cold or stressed.
Starting during childhood, I also had bouts of IBS when under stress. This escalated after the bout of hepatitis and I was hospitalized twice in Yale New Haven during the 70s, and was told my entire GI tract was inflamed. At 30 years old, having worked in the ICCU for 5 years, I left the high-stress life. I moved back to Florida where I married and began spending much time in the tropical sun living on a sailboat. I had my daughter in 1979, delivered by C-section. In 1985 we moved to Spain, although I would return to the United States at regular intervals.
While in Spain, I contracted Paratyphoid B, a typhoid-like illness caused by a strain of Salmonella. During travels through Morocco and other countries, I suffered from a variety of other infections. My two dogs even had a parasitic disease called Leishmaniasis, which I treated with a weekly injection. After being exposed to so many germs, I was certainly a prime candidate for Dr. Marshall's model of chronic disease in which people accumulate a "toxigenic pea soup" of pathogens, all of which contribute to chronic symptoms down the road.
Then, in the mid 90s, I was bitten by a tick while vacationing at the Jersey Shore. I had one week of flu-like symptoms that cleared, but I was never totally symptom-free from that time forward. Slowly I started to have back problems, muscle spasms, and bouts of malaise that would cycle off and on. This did not stop me from riding my horse and even trying to run in a Club. But I was called the "snail" because I never had enough stamina to keep up with the pack. In 1999 we had a very virulent attack of ticks and fleas on our animals. None of the normal products seemed to kill them. It was like a plague and I am sorry to say that I handled many of the ticks and fleas because I was constantly picking them off the animals without gloves. I remember entering the dog kennel one day only to find that my legs were black with the fleas. I was literally pouring buckets of chemicals on them at that point. Later my dog died from an array of symptoms, all surely caused by L-form bacteria.
Shortly thereafter, I became very ill with abdominal cramping, nausea, and a low-grade fever, malaise, profound weakness, headache, photosensitivity, congested eyes, muscular stiffness, and pain similar to that of fibromyalgia. I began to lose cognitive function and started to stutter. I became irritable and had mood swings and terrible insomnia. The worst was extreme back pain. The Spanish doctors did a number of tests and could not find out the cause, as nothing was abnormal in my blood work. An X-ray showed that the discs in my back had become swollen, and I was diagnosed as having radiculitis, this being inflammation of the nerve roots. I've had a baby, and this pain was worse than the pain I experienced during childbirth. I was unable to sit or stand and no medication seemed to help.
At the very same time my nephew and my cousin back in NJ were having similar symptoms and were diagnosed as having Lyme Disease. So the Spanish doctor did an Eliza score that was elevated and started me on 100 mg of the antibiotic doxycycline 4 times a day. The symptoms immediately began to subside, and I was treated for 6 weeks.
I improved only to begin a phase where I started to cycle in and out of rounds and rounds of feeling fairly OK followed by periods of feeling terrible and taking more doxycycline. I also began to develop strange muscle spasms. It felt as if there was a live animal inside me, moving the muscles inside my body. The feeling was similar to that of pregnancy contractions in the sense that they really shook me up but weren't painful. I started to experience tics and twitching in my fingers and toes. I developed a left sided earache and a painful cheek. I started to do research about Lyme on the internet. I wanted to avoid IV antibiotics at all costs because I remembered how the boy from Old Lyme, Connecticut had developed a heart block after being given high-dose antibiotics, which I now know was a severe reaction.
By 2000 I was a chronic mess. I started to have what felt like panic attacks in my chest – as if all the energy was leaving my heart area. I was seeing a therapist for the emotional instability. Every time my symptoms returned in full force, I could feel my muscle strength disappearing at an ever-greater rate. I finally returned to the States determined to find help. I also had to return because I was so debilitated that I needed my family to help me cope. I was scared to death.
Back in the US in 2001, I continued to take doxycyline, continued to herx, and continued to deteriorate. After finishing one nine-month course of the antibiotic, my perception was so skewed that I was convinced I had multiple sclerosis. The muscles in my legs were so heavy that it seemed as if I was wearing cement boots. I didn't even have the strength to roll over in bed. During this time, and even during the year before, I was unable to tolerate going to the grocery store. The trip to the back of the store to get meat was a nightmare. I really thought I was nuts, as every time I would get dizzy, nauseous and faint.
As I continued to get sicker and sicker, I contacted 15 different specialists, each of whom refused to see me or take me on as a patient. After getting the door slammed in my face I was desperate, but today I think the fact that I never ended up seeing a "specialist" is one of the best things that's ever happened to me. Instead of seeing a specialist, I eventually ended up becoming the patient of a general practitioner in my area. At that point I started taking alternative treatments – colloidal silver and flaxseed oil extract (which is high in vitamin D). Not surprisingly, several months later, I had a severe relapse. I was out in the sun trying to do a small amount of gardening when I just collapsed. After that point, I began to suffer from palsy-like shaking of my left arm and dark purple staining of the skin on the back of my hand. I had been doing lots of searching on the internet looking for help from Lyme. It seemed that the people who had done strong IV drugs were just as bad off as those who had taken oral antibiotics.
Finally, one of my Google searches led me to Sarcoinfo.com – the precursor website to the Marshall Protocol study site. The treatment made sense and the science seemed solid. I asked my doctor if I could start the Marshall Protocol medications and he said "NO" but he would be willing to follow me with routine blood tests under my insurance. I persevered and finally found another elderly open-minded alternative type doctor who agreed to let me try the MP. He had been using minocycline on his rheumatoid arthritis patients with some success. I began the treatment in August of 2004.
I was also driven to pursue the MP because some of its major tenets resonated with the theories of a Japanese doctor I had worked with and respected while in Spain. He had explained to me that what we call the symptoms of an illness – a runny nose, diarrhea, coughing – are actually just the body's response to getting rid of byproducts and toxins, which in most cases are created by an infectious agent. The body will stay healthy if the immune system is in balance. This helped me understand that once on the MP a rise in symptoms was a good sign, an indication that my body was killing the bacteria, making me feel "worse but better" by getting rid of the debris they left behind.
I started to feel better as soon as I started taking Benicar. I experienced strong immunopathology (the immune system's response to bacterial death) at points but the symptoms never reached the level of the worst symptoms I had experienced before starting the MP. In fact, immunopathology was always manageable and I was able to continue to have a life while doing the treatment. Sometimes immunopathology occurred in tissues of the body that I hadn't even realized were infected before starting the MP. For example, a strange immunopathological reaction developed where I would wake up in the middle of the night, cough, and choke. Obviously I had bacteria in my throat and sinuses that I had not realized were there pre-MP. As expected, the reaction gradually went away as the bacteria were killed.
The old irritable bowel syndrome and colitis symptoms came back and were quite intense, with bouts of diarrhea. In fact, different parts of my body reacted with more intense symptoms followed by relief of symptoms. Usually worse before better. Other symptoms that flared but then went away were a burning feeling in my tongue and also an increase in discomfort in my jawbone around my teeth.
At times the immunopathology made me feel weak and fragile, and during those periods sometimes I did wonder, "Will I ever get over this?" Worse than dealing with the pain was the fact that when I felt weak, I hated to view myself as an old, chronically ill lady. But as I killed enough of the bacteria causing my symptoms I got my drive back. I turned a corner and now those images of weakness and disease have dissipated.
When I first started the MP, I had a good deal of immunopathology in the lower L4 and L5 disks of my spine. However, these symptoms gradually waned, and are now minimal. I can walk quite a bit – so much more than I ever could before. This year, I was finally able to return to Spain, and it was the first time in five years that I could walk without any pain. Pre-MP an MRI had confirmed that the L4 and L5 disks were swollen. Since I no longer have symptoms associated with the swelling it's on my agenda to have that test repeated to prove they are healed. Whereas before I couldn't bend over to put on my shoes or even my pants, today I can easily touch my toes and the flexibility in my spine has increased tremendously.
I wasn't prepared for my legs to swell due to immunopathology, but while bacteria in my legs were being killed, my knees and ankles became red and swollen. However, these issues also resolved as I wore away at my bacterial load. My muscle spasms have significantly diminished. No more stepping off a curb the wrong way and getting a terrible spasm in my rear end or neck.
I used to have terrible headaches that are no longer a problem. Because of the headaches, I used to take up to six Tylenol a day. Now I hardly ever take a Tylenol. The same goes for Valium and Xanax which I used to take in order to keep my muscle spasms and my nervous system under control. Now I only take those meds on rare occasions when I think I may be subjected to a lot of stress.
Before the MP, I had also had symptoms in my chest. They were hard to describe – it felt as if all the energy in my chest was wrong, as if there was not enough energy going to my heart. I was always concerned about pain and weakness in this area. During the treatment I did have increase in these symptoms – to the point of having chest pain, but these feelings have gone away. I have had heart tests done which show I have an anatomically healthy heart.
My colitis and IBS symptoms have improved immensely. I can't even think of the last time I had diarrhea or colitis-like symptoms.
Although for a while my immunopathology brought back periods where I was very emotional or paranoid, those feelings have now subsided and I feel very level headed. My thyroid levels, which at one point during treatment became unstable, have now bounced back into range.
And I can once again drink alcohol! I used to have terrible reactions to alcohol. One drink would make me hungover for days. But this past Christmas, I actually took shots of whiskey, held up fine, and enjoyed the taste. My nails are looking better and although I've had dandruff all my life, I go through periods now where it completely goes away. Whereas I used to have a twitching in my fingers (particularly the thumbs), I haven't noticed it for months.
At one point, I suffered from painful and swollen eyes (they just killed me!). It felt as if there were hairs inside my eyeballs trying to get out. These symptoms have largely subsided. I still get some cycles of eye irritation as I continue to heal – these symptoms are exacerbated if I get extra light in my eyes from spending too much time on the computer.
During the 1990s I had an earache, combined with the feeling that I had water stuck in my left ear and discomfort in my cheekbone. This caused me to continually rub under my cheekbone for years. My ears were so uncomfortable that I had to hold them closed when I was in the shower. Now these issues are completely gone. I am even taking water aerobics classes where my head is totally submerged under water.
My writing skills are still somewhat affected, although my ability to spell and write has gotten much better. I no longer find composing even short emails or letters to be a daunting task.
Although I still struggle with occasional insomnia, mild muscle fatigue, and muscle discomfort after exercise, for the most part I bounce around walking and talking every day without thinking about my symptoms at all. I wake up in the morning and stretch my muscles and am surprised to find that I don't have spasms or pain. I still feel my neurological system isn't 100% healed as I do get an overwhelmed feeling sometimes and occasionally wake up on the wrong side of the bed, have extra gas, get a stuffy head, and feel some body stiffness. These symptoms are worse if I wear myself out (get over-tired).
In terms of total recovery, I'd say I'm about an 8 on a 10-point scale. If I continue to improve at this pace I think I will be able to ride a horse again in about a year.
At the start of the MP I was very sensitive to light. Consequently, I was strict about avoiding light and wore my NoIR sunglasses regularly. But recently, I volunteered for three weeks on Wednesday afternoons at a nature preserve. I worked inside, but there were periods of time where I joined other volunteers out on the deck in the sun. Although I expected to get a rise in symptoms due to the sun exposure, afterwards I felt just a bit tired from the new experience of working and being on my feet for hours, but this probably had very little, if anything, to do with the sun. I find that heat from the sun can still flare my symptoms occasionally – so heat from the sun is more of a problem than the light itself.
Now I only wear my sunglasses when I am going on a long distance car ride in the sun, or when it's very sunny outside. I don't need to wear them in the supermarket or at the mall anymore where, happily, I find that I can tolerate the light without a problem.
…..Do it! It will change your life and it's the only cure that exists for your chronic disease. Don't try too hard to analyze what exact bugs you have. We are all "pea soup" and in the end it's not important. Bottom line is that your immune system is out of balance and at war with something. When you start the treatment, don't push yourself too hard and try to raise your dose of antibiotics too quickly. Because I had just re-married when I started the MP, I took occasional breaks and ramped my antibiotics slowly. But at the end of the day I still got better. Keeping your immunopathology reaction manageable, so that you can still have a life while on the treatment, is important. Also, I think it's important to give your body time to recover from the release of toxins that accompanies immunopathology. Use the website and try to read as much as you can. Reach out and email someone for support if you get confused. Don't expect it to be predictable. The waxing and waning of symptoms is confusing so try to look towards the bigger picture.
I plan to enjoy life and travel again, do sports, maybe even ride a horse. I plan to continue to do the MP and recover fully. It might take a year, it might take longer, and I don't worry anymore about the length of time. I view the process so differently now. Actually, since L-form bacteria have been linked to aging, I feel lucky that I am getting a chance to kill any aging-related L-form pathogens or "CWDs" in the bud. So maybe I'm even slowing down the overall aging process in my body.
Yesterday, by no accident I'm sure, I was talking to someone (turned out to be a scientist) while volunteering at the preserve and found out his young wife is very ill with chronic fatigue, etc. They have visited many doctors without hope or diagnosis. This morning I sent her all the Marshall Protocol research materials and I won't be surprised when she joins the growing group of those who are healing, thanks to the MP.
Individually we can share our personal stories with people we meet. Do the MP and be an example of healing through the MP. Example is the best form of teaching. I think that we are in the pioneering stage of learning about chronic immune disorders and disease processes thanks to Dr Marshall and all those doing research in this area. It's a grassroots movement but it's growing.
Thank you, Dr Marshall, and thanks to all the dedicated Protocol Moderators and Staff for their years of support. Thank you, Amy, for giving us a forum to share our hope.
18 Jan
Several years ago this West Virginia native feared for his life. He had managed to survive two heart attacks, but his sarcoidosis of the heart, myopathy, atrial fibrillation, and fluid-filled lungs were only getting worse. Now, after 2 1/2 years on Autoimmunity Research Foundation's Marshall Protocol, this 69-year old is active again thanks to the fact that his heart conditions and sarcoidosis symptoms have improved considerably. Meet Freddie Ash.
As a child I was fed canned milk fortified with vitamin D. Early on I was deficient in iron. They made me eat molasses to try to bring the level of iron up, but in grade school it was so low I saw the doctor almost every day. They had to pull out my baby teeth because they rotted too quickly.
In grade school they had a nurse come in to check our hearts. Later that day I was given a slip – I never did find out what it said. A doctor examined me with a forescope but could find nothing wrong. I was dismissed.
But I began to feel there was something wrong with my heart. During the 50s, we had a glider on the front porch. When I would lie on the glider it felt as if the whole glider would jump every time my heart would beat.
In December of '78 I had a high fever. I was so cold that my wife had to put socks on my feet while I was in bed. I was shaking and shivering. When my fever reached 104 degrees I went to the hospital and they did an EKG. I was told that not enough oxygen was flowing to my heart and that I should get a stress test done.
But when I went to my family doctor the next day he said, "Oh, the low oxygen was just the result of a fever, you don't need a heart test!" Looking back, I can't imagine that he didn't have my heart checked.
In August '72 I went to the doctor because I was starting to feel stiff all over. My ankles were red and extremely swollen. My doctor said he'd never seen anything like it before. They thought maybe I had arthritis, yet my bloodwork didn't confirm that diagnosis.
That March of '73 I began to have trouble with my left eye. It felt as if somebody had stuck their finger in it – it was red and hurt as if there was a piece of broken glass inside. A doctor at the Huntington Eye Clinic diagnosed me with iritis. I started to take the steroid eye-drop prednisolone. A few days later I was back. The symptoms had spread to my right eye. At that point I began to think, "Hey, maybe my eye symptoms are connected to my other disease symptoms!", but my doctors didn't have the same view. My spleen was enlarged – a symptom I now know was a result of sarcoidosis. During this time I lost about 40 pounds in 30 days. My friends thought I might die.
I began to suffer from chest pain and saw a different doctor in '82. This time he did run an EKG and found a blockage in my heart and also in my lungs. I also had swollen lymph nodes. I was sent to see a heart specialist in Dayton Ohio. After some testing he told me I had sarcoidosis and sent me to the emergency room. I refused to take an ambulance to the ER and drove myself. Once there, I was hooked up to a heart machine. I could see on the screen of the machine that where the lines are supposed to go up and down with each heart beat, my lines were only going down. It felt like an electric shock was going through my entire body. Immediately after, I was told I had 1st degree blockage, myopathy, and sarcoidosis of the heart.
In 2000 a heart test showed that the wide parts of my arteries were blocked by 95%. My ejection fraction went down to 15%. I was told I needed to have bypass surgery. The Cleveland Clinic also thought I might need a heart transplant. The whole time I kept telling my doctors "My sarcoidodis and my heart problems are connected!" I had researched sarcoidosis in great depth and read papers stating that sarcoidosis and heart disease were both bacterial illnesses. Yet my doctors always insisted on viewing them as two separate diseases. At one point when I was being interviewed by a doctor he said, "You know more about sarcoidosis than we do!"
The bypass surgery was scheduled for March 20th. On March 10th I had a heart attack. They gave me ten days to recover, then flew my by plane to get the bypasses done. My insurance company never did cover the flight – I had to pay $8,600 out of pocket.
It took me a long time to recuperate from that heart attack and the surgery. But in August 2003 I went on vacation with my wife. I started to feel nauseous, my back hurt, and there was a pain down my left arm. I was flown by helicopter to West Virginia University Hospital and treated for another heart attack. When the nurse took my blood pressure she refused to write it down because it was so low.
The doctors at the hospital told me there was something wrong with my bypasses. In fact, they couldn't even find the bypasses. My doctor said my level of CRP was elevated. I shook my finger at him and said, "CRP is a marker of inflammation! Sacoidosis is an inflammatory disease and my heart disease is connected to my sarcoidosis!", but he still didn't acknowledge the connection. Today I know that view was correct. Dr. Marshall's research has confirmed that both sarcoidosis and heart disease are connected because they are both diseases caused by L-form bacteria.
I had a second round of bypass surgery done. It turned out that all of the previous bypasses had become calcified. The doctor said he had never seen anything like it. My lymph nodes and aorta were also calcified. I was also told that I had atrial fibriliation. My left leg was swollen with scars and was in very bad shape because the veins had been pulled out during my first bypass surgery. I had to start seeing the doctor every week so that 2 liters of fluid could be drained from my lungs at each visit. I thought for sure I'd be a dead man in 3-4 years.
Before starting the Marshall Protocol my atrial fibrillation (AF) was at 97%. When I started the Marshall Protocol it went away, most likely due to the anti-inflammatory effects of Benicar. I was able to stop all blood thinners. However an EKG revealed that the atrial fibrillation returned in March of 2006 as a result of an increase in the inflammation generated by bacterial die-off. At that point I started taking one blood thinner again. However, after getting the AF test results, I visited two different doctors and a nurse. Based on my heart rhythm, none of them could tell that the AF had returned. Just a few days ago I had a visit with yet another doctor who repeated that my heart rhythm was too good for me to be in atrial fibrillation. They were very surprised at how even my heart rhythm is. So it appears that the MP has allowed my heart rhythm to become so much steadier that the AF has little effect.
Now, I can lie on my left side without my heart beating so hard that it feels like it is coming out of my chest. My ejection fraction has improved from 33-35% (it was 15% at one time) to about 45%. My cholesterol level has dropped from 225-247 to 150 and 147 at my last two appointments. Before the MP my tryiglyceride levels were in the range of 295-395. My last blood test showed they have dropped to 61 and 62. My blood pressure used to run low – around 84/45 (as low as 48/26 on time). Now it reads 110/58.
After my first bypasses were done, I started to have problems with my left leg. It was cut again in eight places during my second round of bypass surgery. I started to have red swelling and fever blisters on the leg which reached all the way down to my knee. The Cleveland Clinic could not figure out what was wrong. Finally a cardiologist told me that the leg would never get any better. But after starting Benicar, the leg started to improve. The redness and blisters have gone away. There is still swelling from time to time, but it is less than before, and comes and goes depending on my dose of antibiotics.
After my heart attacks I could barely walk across the room. Now I can walk for over an hour and make a point of trying to walk at least 30 minutes every day. I can carry a basketload of clothes up the steps without a problem, something that was very difficult for me to do before the MP.
I can breathe so much more easily and the condition of my lung has greatly improved. There are days when I can just breathe and breathe and breathe! At the start of the MP I was forced to visit a pulmonologist every three months, but now my doctor has told me that I only need to come for a visit once a year.
I no longer require supplemental oxygen at night. In 2005, after starting the Marshall Protocol, a person from the oxygen company came to check my machine and found that it wasn't working. I hadn't even noticed! She administered a test which showed that my oxygen only fell below 90% for 8 seconds (a good score). Two days later she called to say she was coming to pick up the machine because I no longer needed it.
I take substantially fewer painkillers. I was on some sort of pain medication since August of 1972 up until August of 2006. Now I no longer take pain medication on a continual basis – only once in a while if my immunopathology (bacterial die-off reaction) becomes too strong.
Starting in 1968, I began to experience a bad ringing sensation in my ears. Since starting the Marshall Protocol the ringing has diminished by 95% or more. Also, in 1972 I was told that my left ear was unable to hear high-pitched sounds. I have not had a hearing test since starting the MP, but I've noticed that I now hear sounds in songs that I never heard before.
After starting the MP, my urologist informed me that my prostate had shrunk. I also used to have problems with hemorrhoids since the 1980s. Back then I found that every time I was admitted to the hospital I would develop hemorrhoids. Since starting the MP I have not had any hemorrhoid problems at all and I have not used any hemorrhoid medications since August 2005.
My iritis is completely gone. Furthermore, my eye doctor has detected no signs of inflammation in my eyes. People my age tend to develop granulomas, cataracts, or macular degeneration, but I have no signs of those illnesses at all.
Starting on Thanksgiving day 1964, I started to have bad migraine headaches. Since starting the MP I have experienced the vision part of an ocular migrane, but it is no longer accompanied by headache or finger numbness.
This year I also noticed that my fingernails no longer crack, peal, or split like they did before the MP. Before the MP I had to keep them very short, but now they grow long before I have to cut them. Starting in 1982 my forehead had a sandpaper feel to it. Now the bumps have gone away and the skin feels smooth and much improved.
In the late 1980s I lost most of my sense of smell but after being on the MP for a while I find that I can smell things that I have not been able to smell for years.
After I had my first bypasses done in March 2001, I noticed that I would become sick if I spent time in stores with bright lights such as Walmart, Krogers or Kmart. Since starting the Marshall Protocol the light no longer bothers me and I don't get sick in those stores.
This past year was the first time in about five years that I have not had pneumonia or bronchitis. I feel stronger and much more resilient. My doctors have warned me that someone my age is at risk for a stroke, but I am not concerned about strokes because I have read many studies about how Benicar is often able to prevent strokes by reducing inflammation.
Both myself and Marshall Protocol moderator Belinda Fenter were members of the World Sarcoidosis Society. She told me about the Marshall Protocol and sent me a lot of papers on the subject. I had already read some articles about how vitamin D negatively affects people with sarcoidosis so Dr. Marshall's research caught my interest right away. I started to watch the progress of others on the Marshall Protocol and was impressed. One day, Belinda even called me to help clarify some of my questions about the MP. We became friends and still are today. At that point I was confident that I wanted to start the MP. I went to my family doctor and said, "Call doctor Marshall!"
He's very interested in my progress. He's especially interested in Dr. Marshall's work with vitamin D. Any time he's had a question I've posted in on the Marshall Protocol study site and Dr. Marshall has been nice enough to answer it. My family doctor is impressed with Benicar. In August of 2006 he told me he had been in a meeting with the Benicar reps. They gave him information about Benicar and how it lowers inflammation & CRP among other things. He said, "FREDDIE, YOU TOLD ME ABOUT ALL THIS TWO YEARS AGO!" I replied that I had learned it all from Dr Marshall.
This is the only cure for chronic disease. I am confident that I will regain complete health thanks to the MP. Because so many people need to know about the treatment, I go to support group meetings and pass out DVDs with Dr. Marshall's presentations. I go to health fairs and tell people about the MP. The MP is not easy but neither is your disease, and it will kill you if you don't take action.
Unless somebody proves something different, I plan to preach about the MP.
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown, she wrote her senior thesis on Chronic Fatigue Syndrome and the Marshall Protocol.