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Interview with Peter de Jager: chronic fatigue syndrome, multiple chemical sensitivity

Posted By Amy Proal On May 23, 2008 @ 11:44 am In interview (patient),marshall protocol | Comments Disabled

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.

Can you describe the progression of your disease?

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.

How did you find the Marshall Protocol?

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.

So what are your symptoms like these days?

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.

What was the average time scale of your recovery?

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.

Did you keep working during your time on the MP?

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.

Tell me about your ability to tolerate light when you started the Marshall Protocol and how much light you can tolerate today.

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.

What was the hardest part about doing the MP?

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.

What advice do you have for people starting the Marshall Protocol?

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.

What lies ahead?

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….


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URL to article: http://bacteriality.com/2008/05/23/interview20/