23 May 2008
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….
28 Responses for "Interview with Peter de Jager: chronic fatigue syndrome, multiple chemical sensitivity"
I find it so encouraging when folk with CFS feel better within the first year. That has not been my experience. Even at 13 months on the MP I was feeling much much worse (except when I had energy, the quality of the energy was better–I did not feel like walking death…that is, when not having tachycardia).
However, taking a break at 13 months has shown me just how much I have improved. And so I will be going back on the MP and crossing my fingers for the day when I am feeling better on the MP than I did before I started it.
In the meantime, as a result of the break, I know I’m getting better and it will be easier to trust all the IPR.
Glad to see that Peter has his brain back; I’m really looking forward to that day.
Claire
Dear Amy:
I really appreciate that there is a new story of a CFS patient added to your Patient Interviews. (Perhaps I should say “a former CFS patient”.) I also appreciate Paul Albert’s story — his openness about his depression perhaps took courage, but his story is a great help to other people.
Many of us can share these patient interviews with family members in hopes that they (families) might gain a better understanding of what it’s like to live with CFS. These interviews express the illness from a genuine human perspective — not just a list of symptoms and “complaints” that often seem meaningless to people.
Thanks as ever for your work.
Bethany
Thank you for another story from an ME/CFS patient. As a ME/CFSer on the MP (even though I know MP works for all Th1 conditions), I really draw hope and strength from the experiences of other ME/CFSers.
I am at 7 months on the MP and am one of the lucky ones. I have noticed many improvements. I have absolutely no doubt that this is due to the MP and am totally committed to it. I really feel for the people who have been on the MP for 18 months, even 3 years who are yet to experience discernible improvements.
Thanks Peter for sharing your story, to Amy and Albert for this site, to Trevor and his whole team. And to the doctors who provide us with the essential prescriptions that enable us to do the MP.
regards, k
Hi K,
Glad to hear that you were inspired by Peter’s progress. I’m also really glad to hear that you are also and the MP and noting improvements. It feels great when symptoms start to ease up, doesn’t it?
The rate at which a person progresses through the MP, and the rate at which they are able to sense improvement is largely determined by bacterial load. Unfortunately, some of our patients (the ones who may take a year or two to see improvements) generally took immunosuppressant drugs or steroids for long periods of time before starting the MP. It’s sad, because such drugs weaken the immune system to a point where their bacteria were able to spread with much greater ease before they found the MP. Now, they have to spend a longer period of time on the MP in order to kill all the pathogens they acquired.
Of course, in my opinion, once on the MP everyone is recovering even if they can’t feel it yet. That’s because each day, everyone on the MP kills a tiny fraction more of their bacterial load, bringing them one step closer to the day when they become bacteria free. It may take a while before they kill enough bacteria to feel better (especially when their immunopathology continues to remain high) but they are moving in the right direction.
Hope you keep improving at a rapid pace!
Best,
Amy
great stuff peter
i am on MP 6 months..now in phase 2 and have suddenly felt some improvements–minor but definite–
as my immunopathologie is high and lightsensitivity too it is hard to know where one actually stands–but i totally know that the MP science works!!
thank you Trevor Marshall..genius”! MEg and others,amy…
lg chris
Thanks Chris,
It’s great to hear you are noting improvements! Keep plugging away!
Amy
My husband contracted Valley Fever oer a year ago and underwent the specified treatment. He is now 82 years old. Lately, his energy level has dropped to the point of not wanting to do hardly anything. His dr. has given him several tests including heart scans, etc. and nothing has been found. We wonder if he may have CFS – how can this be diagnosed? Would greatly appreaciate your help. Nancy Rice
Hi Nancy,
Good to hear from you. This site doesn’t discuss how to diagnose CFS, rather it focuses on a new treatment for CFS called the Marshall Protocol.
I do know that there are no specific laboratory tests for CFS. The diagnosis is made on the basis of the persistence of certain symptoms for over 6 months. I’d Google CFS and you’ll probably come up with a web site that will give you the criteria.
In the eyes of our research team, your father is suffering from symptoms that the Marshall Protocol can effectively treatment. We are part of a new movement which has identified that chronic inflammatory diseases are actually caused by an intrphagocytic, metagenomic microbiota of persistent L-form and biofilm bacteria. No doubt your father started to accumulate these pathogens when he had valley fever and they have since spread.
Your father could do the Marshall Protocol, but at his age it might be difficult as patient on the treatment must manage a bacterial die-off reaction that causes symptom flares. Most of our patients are younger than your father.
Nevertheless, if you are interested in looking at the treatment in greater detail I recommend reading as much as possible about the treatment on this site and on the study site itself:
http://www.marshallprotocol.com
This video provides a good introduction:
http://bacteriality.com/2008/05/07/mpintro/
if you have questions about the Marshall Protocol you can ask them at the following website where they will be answered free of charge by patient advocates:
http://www.curemyth1.org
Best,
Amy
ip has hit me and i´m back reading to assure myself–thanx amy-
Hi Chris,
Sorry to hear you’ve been hit by more IP. Then again, more of your bacteria are meeting their deaths. It’s hard to stay positive during difficult periods of IP, but knowing that most of us endured such times only to feel better when they lifted will hopefully lift your spirits.
Best,
Amy
I’m in month 6 of the MP for CFS and can identify so completely with Peter’s whole life. Everything from inability to run long distances, to the slow disintegration of career, to the symptoms of illness and then MP pains and recovery. My first 3 months were hard, 4 & 5 were difficult, and 6 has been hard again as the IP has moved more into my head. IP was almost humorous and entertaining when in my body. Not so funny when in my head. The return (albeit sporadic) of brain fog, depression, vision issues, etc. is a bit unnerving. Reading this article was very encouraging.
One highlight I’m having is the return of humor (on my good days). It’s just so nice, on those good days to bounce around with my kids and laugh and sing—something my kids haven’t seen in years.
I’m nearing the summer solstice now, and viewing it as something akin to crossing the equator on an old sailing ship. Cannot wait to get back to those long, dark, winter nights.
Hi KD,
Sounds like you’ve been targeting quite a few different species of bacteria already. Those of us with CFS generally have symptoms in so many areas of the body that we are definitely in for diverse immunopathology.
I think I’ve also become more lighthearted over the past year. I know for a fact that I’m definitely calmer. I’m seldom agitated and I’m able to make much more rational decisions.
I hope your IP remains tolerable and I can understand the desire for a break from the current rise in sunlight and heat. Each year it will get easier (at least it has for me). This summer is the first time that I have not really worried about going out during the day or longed for winter.
Best,
Amy
Thanks for the response Amy. Could you or Paul give me a little feedback on light sensitivity for the 2nd year of the protocol? I’m a father with teenage kids, so the real cost of sun avoidance has everything to do with me missing chances to vacation, or even play outside with them.
In the second summer could you go out at all, or is the second summer very likely to be lost as well? I started Dec 2007 and so next summer will be running from the 18th to the 21st month of the protocol.
I know it is unpredictable, and that it depends on my own dilligence, but I am dilligent, and I’m likewise suprised at many similarities for those with CFS, so any feedback from our famous leaders would be appreciated.
Thanks again,
Kelly
Hi Kelly,
It’s tough to predict how light sensitive you will be next summer. A lot depends on how light sensitive you are now. Do you find you really have to avoid light this summer? Does just a short period of time in the sun significantly flare your symptoms now? If so, it will probably take a few years before you will be back in the sun again.
Then again, if you can tolerate some light this summer next year should get easier. I can’t say that you will be planning a beach vacation, but you could probably plan a vacation to somewhere where you could be in the shade at most points.
I was extremely light sensitive when I started the MP. Three years later, I still cannot be in the direct sun. But Paul and I go to Central Park later in the day and play frisbee in the shade. I hold up just fine. I also can walk around the city during the day even when it’s sunny as long as I’m wearing long sleeves.
So it’s possible that by next summer you could still cover up but be able to spend more time with your kids outside. But I just can’t tell you for sure.
I also get the sense that you are resourceful, so hopefully if you can’t get as much sun as you’d hope for next summer you can think of more activities to do with the kids that don’t involve direct sunlight. I’m a fan of swimming after dusk, going to museums during the day, etc. This year I’ve been on several fun vacations where I’ve had normal light exposure and been fine. But I still can’t seek the sun.
Paul can tolerate much more sun then I can. But even now, it affects his sleep sometimes ( he suffers from more insomnia). But he’s largely able to be outside during all times of day without worries. During his second year on the MP he could also tolerate a fair amount of sun. Hopefully you will follow a course more like his than mine.
Best,
Amy
heyy
im doing a project on chronic fatigue syndrome.
i was wondering if chronic fatigue syndrome is a cause of stress?
x
Hi Melisa,
Well, CFS can cause a person to feel stressed out because it’s very difficult to manage the symptoms of the disease, but stress does not CAUSE CFS.
CFS is a chronic inflammatory diseases that is caused by bacteria that live inside the cells of the immune system and inside protected colonies called biofilms. You can read more about these bacteria in the following articles:
http://bacteriality.com/2007/08/15/l-forms/
http://bacteriality.com/2008/05/26/biofilm/
I also highly suggest that you watch the following video about inflammatory diseases such as CFS which describes how they are caused and how they can be treated:
http://bacteriality.com/2008/05/07/mpintro/
Good luck on your project!
Amy
My daughter suffers from CFS. After many years of struggling with this, We’re hoping there’s somingthing here that will help. Do you have suggestions on how to get started on MP and who to see in Indpls?
Hi Carol,
So sorry not to write you back more quickly. I’m in the process of applying to graduate school and was very busy over the last few days.
In any case, there is definitely something to the MP! The MP is a therapy that could be used to treat CFS. Unlike the other treatments your daughter has probably tried, the MP does not “cover up” symptoms with palliative drugs. Rather, it targets the root cause of CFS, which has recently been determined to be chronic intracellular and biofilm bacteria. You can read more about the pathogens on this site.
Three years ago I was in your daughter’s shoes. I too was young girl suffering from a severe case of CFS. Today I am living essentially a normal life again and feel like a completely different person. I have resiliency again that is indicative of true recovery. With another year of treatment under my belt I am confident I will be completely healthy again.
Your daughter should definitely start the MP as soon as possible. I generally note that younger patients progress through the MP at a faster rate so your daughter is in a good place.
In order to start the treatment, first read as much information as possible about the MP on this site and on the Marshall Protocol study site itself – http://www.marshallprotocol.com.
Then, if you still have questions about how to start the MP you can post them at the following website where they will be answered by experienced patient advocates:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria).
Your will need to find a physician who is willing to prescribe your daughter the necessary MP medications. Hopefully the advocates on curemyth1 may be able to point you towards a doctor who uses the protocol in the Indianapolis area. If not, would your daughter’s current doctor be willing to put her on the treatment? The study site contains numerous materials on the MP to present to physicians. So you may want to pass some of them by her current doctor.
Good luck!
Amy
Dear Amy,
I have been suffering from mildest muscle and joint pain (moving all around the body), unrefreshing sleep (trouble falling and staying asleep) along with fatigue (I can do all the things but I feel sleepy and keep yawning all the day). I have tested negative for HIV, Hep B,C,e (due to moderately elevated SGPT). All these started whed I started stressing about one issue in the mid May and still continuing. Now I believe I have mild CFS. I am in UK. Should I start MP now? Daylight isn’t a problem for me. I just feel that I need to sleep and I can’t. I am about to start my full time job (in September) with an accounting firm. Will it interfere with my job ? early reply will be much appreciated….
Hi Reagan,
Yes, you should definitely start the Marshall Protocol as soon as possible. Regardless of whether you have been officially diagnosed with CFS, it very much sounds as if you harbor the chronic bacterial forms that cause many different forms of inflammatory disease. When it comes to killing these pathogens, killing them as the early as possible is key. This is because in order to kill them you will need to experience a bacterial die-off reaction, and the reaction will be much more subdued if your bacterial load has spread to a lesser extent.
While I cannot guarantee that it will not be too difficult for you to work if you start the MP, generally those people who are able to work before starting the treatment are able to continue working while on the MP. You may become a bit more light-sensitive, and in that case, you may have to get permission from your workplace that would allow you to wear dark glasses when working on a bright computer.
Stress often reveals chronic infection because a stressful event weakens the immune response. So while the bacteria you harbor have probably been accumulating for a while, it was a stressful event that revealed their presence.
I understand what it’s like not to be able to sleep. I had great difficulty sleeping when my CFS was at its worst. I took sleep medication the during my first years on the MP in order to ensure that I at least got adequate sleep. I recommend trying to find a sleep aid that works for you and using it while on the treatment. Gradually you should find that you don’t need it anymore, but it’s helpful at the start.
Once again, it sounds like your bacterial load is relatively low right now. So if you start the MP now the treatment should take a shorter time to complete and your immunopathology should not be as strong. Bottom line – start now, and you will have your full life back more quickly.
If you have any more questions about the MP the best place to ask them is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria).
The patient advocates on the site will answer your questions free of charge and hopefully help you find an MP physician you can work with in the UK.
Best,
Amy
Amy,
I’m trying hard to understand all this. How widespread is L-form bacterial infection? The folks in your Patient Interviews are all recovering from amazingly horrendous illnesses. But it sounds like th1′s may also be involved in the slow deterioration many people experience which is only recognized as the ‘normal’ symptoms of aging. Is the Marshall Protocol something that would be beneficial to a wide range of folks with lesser maladies? (And I’m including myself here–overweight yet not obese, but always craving carbohydrates; ‘normal’ peri-menopausal symptoms including sluggishness; ongoing granulosa annulare for nine years, a ‘harmless’ autoimmune symptom–but nothing debilitating like these other folks…)
Sorry to be so long-winded here, but I still have more questions:
Peter reports (4th paragraph) that his eyes became sensitive to light years before doing MP. I am trying to understand whether light sensitivity is a symptom of L-form infection (in which case, could light sensitivity be used as a diagnostic tool?) or whether it’s the body’s response to the Marshall Protocol (in which case, why isn’t light sensitivity reported by Benicar users who happen to be taking it for high blood pressure?) Is light sensitivity less with a lesser bacterial load?
And, what IS the function of vitamin D for health, aside from avoiding it for years while doing MP, or getting healthy enough to be able to “tolerate” it? If vitamin D suppresses our immune system, is it EVER healthy??
Thank you so much for your time.
Maria
Hi Maria,
The MP is not just for people with horrible illnesses. It’s probably good advertising to have the sickest of the sick turn things around, but the future of the MP may be for people with considerably less severe illnesses as a therapeutic. I’ve seen a lot of such people benefit from the MP. Naturally, it’s much easier for them. The earlier you treat yourself, the better.
Photosensitivity is not absent in people who take Benicar. Note that photosensitivity is occurs with sufficient frequency that it is listed as an adverse side effect for patients who take it once daily. The reason why it is not more common is that people who take Benicar irregularly (by MP standards) have not taken it consistently enough for a full Benicar blockade to be in place.
Light sensitivity is probably too inconsistent to be used as a diagnostic tool. The best bet is a therapeutic probe. You can read more about photosensitivity in this nearly completed Knowledge Base article.
Can vitamin D perform any beneficial function? In people with a proper metabolism of the secosteroid, small amounts do activate the immune response. You’ll forgive me if I don’t go into too much more detail than that. Suffice it to say, the metabolic pathways are much more complex than most people think.
Best,
Amy
I really appreciate reading success stories! Thank you for sharing!
After trying so many supplements, medications, and therapies for 9 years of disabling fibromyalgia/chronic fatigue (plus history of breast cancer, allergies, chemical sensitivities and numerous other symptoms), I feel a sense of hope that the Marshall Protocol could actually be of help!
Now to find a doctor willing to prescribe… In the meantime, I will follow the diet recommendations and consciously avoid sunlight.
(It is a relief to find out my photosensitivity has a cause other than depression!)
Again, thank you for sharing hope…
Hi LJ,
Glad you have been enjoying the patient interviews.
In case you don’t know, you have two options for finding a doctor. One is to ask your current doctor. Present him with some of the publications and presentations by the Autoimmunity Research Foundation research team. The other is to ask for a list of local MP physicians at CureMyTh1.org.
Best,
Paul
Thanks Paul…
Already requested MD list, and none in Hawai’i : (
The key is to now gain the courage to ask my doctor, presenting him with the pubs and presentations… (I appreciate the link.)
I find it a little challenging, as after the numerous trials on allopathic medications, I have avoided seeing him. (Nothing seemed to help.)
Any tips on how to advocate for myself and the MP?
(I’m with an HMO.)
Thanks in advance…
Wow! There are so many parallels between Peter’s disease progression and my own. Thank you for posting this interview. I am getting hopeful again. Thanks so much again.
Ann
(MCS/CFS and general funky health stuff)
Have been on the Protocol for about 2 years now and am 10 days from completing – how is the transition supposed to go? I was thinking just dropping the antibotics and then slowly dropping the Benicar – any advise?
Hi Heather,
There is no set length for the MP. See these articles:
http://mpkb.org/doku.php/home:patients:mp_duration
http://mpkb.org/doku.php/home:mp:break
If you want to stop the treatment completely, I agree with your approach. Stop the antibiotics and wean your Benicar. It may take a while before your body adjusts. There is the absence of an anti-inflammatory effect that takes time to adjust to. Also, it may take a while for your immune system to slow down to pre-MP levels. And, keep in mind, you’re doing this without the benefit of the anti-inflammatory effect.
Naturally, you’re going to want to work with your doctor.
Best,
Paul