Exploring chronic disease
17 Nov 2007
After being diagnosed with the deadly disease sarcoidosis, he felt as if his entire body was shutting down. But after several years on Autoimmunity Research Foundation’s Marshall Protocol this Australian geologist is feeling great and living life to the fullest. Meet Mirek Wozga.
In 2001, I woke up and went outside. For some reason I was extremely cold. Upon returning inside, I realized that I was running a low-grade fever. Several weeks later it was still there. Then, I started to have terrible night sweats, insomnia and severe gastrointestinal pain. I was exhausted and brain-fogged. Because my body was so burnt out, I began to lose weight – almost 15 kilos, dropping down to 65 kilos. Upon waking up every morning, I felt as if someone had beaten me up – literally, not a single muscle wasn’t aching. It was like I’d been to the gym the night before and completely pushed myself over the top. In reality, I lost the ability to exercise.
I saw many general practitioners, none of whom were able to give me a diagnosis. Finally, I saw an expert, who after a series of tests discovered that I had enlarged hilar lymph nodes. An MRI also revealed a substantial number of granulomas in my lungs. I was diagnosed with sarcoidosis.
I was not yet aware of the MP so my doctor started me on a six-month course of prednisone. It suppressed my immune system to the point where my lungs cleared and my granulomas went away. But six months after stopping prednisone, most of my symptoms returned with a vengeance. My lungs remained clear, however this time my fatigue, abdomen and gastrointestinal symptoms were worse than ever. I could barely tolerate food. It felt like my whole system was just shutting down. I tried prednisone again, but second time around it did nothing. Instead, I developed osteoporosis, which is one of the many side effects of the drug.
“Enough is enough!” I thought after my negative experience with prednisone. I turned to the Internet to learn about other treatment options. After scrolling through thousands of web pages about sarcoidosis, I stumbled upon two of Dr. Marshall’s papers. The arguments he put forth seemed extremely plausible. In fact, what I read seemed like common sense. Soon, I had the levels of my two vitamin D metabolites tested. Part of Dr. Marshall’s model includes the fact that people infected with L-form bacteria often have low levels of the precursor form of vitamin D (called 25-D), and high levels of the active form of vitamin D (called 1,25-D). Bloodwork revealed that my vitamin D levels were indeed dysregulated in exactly this fashion. It was then that my trust in Dr. Marshall’s work really took hold. I took the plunge and decided to start the MP. At that point, the treatment was very new and untested. Yet in my eyes, and those of my family, I had nothing to lose.
I started the MP in the early days, when many of the guidelines were still being developed. At the time, Benicar, the medication that patients on the MP use to activate the innate immune system, wasn’t available in Australia. So it was suggested that I substitute another medication from the same class of drugs (ARBs). So I tried taking the antibiotics with a different ARB called Irbesartan. Well, it didn’t work at all. Not surprisingly, today, Dr. Marshall’s molecular modeling research has confirmed that Benicar is the only ARB that will work for patients on the MP.
I started to look for a way to obtain Benicar, but in the meantime, I took the MP antibiotics on their own. The immunopathology from just 25 mg of minocycline hit me like a brick. I finally worked my way up to 100 mg but the immunopathology was still hard to tolerate. Luckily, at that point, I found a way to import Benicar to Australia from overseas. Once I started Benicar, the anti-inflammatory properties of the drug made my immunopathology much easier to tolerate, allowing me to ramp up my antibiotics in a smooth manner.
At the time I started the MP, the phase 2/3 guidelines had not yet been developed. When phase two was finally created (I was about six months into the treatment), a new antibiotic was introduced that really caused my immunopathology to kick in. It was almost like having a rocket under me! Since the reaction was such a positive reflection of the fact that I was killing bacteria, I began to see a light at the end of the tunnel.
It took me a while to get my level of 25-D down into the range in which maximum bacterial killing occurs (I should note that once the level did drop it was fairly easy to maintain.) I feel that the drop, which occurred about 12 months into the treatment, was a major turning point in my recovery. After that point, the exhaustion, nights sweats and gastrointestinal pain began to dissipate. Any doubts I had about the MP faded. I was confident I would recover.
Sometimes when I look back at comments I wrote in my early progress reports I think, “Gee, what was I on?” At the time I didn’t even realize how brain-fogged I was, but I remember the sensation of feeling completely phased out. One person talking was sometimes too much to handle, and I often didn’t comprehend or actually process what I was being told. This type of immunopathology came and went. Now it has completely resolved.
I feel very good! I would say 95-100% recovered. Some days I’m more tired than others, but I have a feeling the occasional tiredness is just a result of living a normal busy life. My abdominal/gastrointestinal symptoms are miniscule compared to 2001, and everything else – the night sweats, the fever, the insomnia, have all resolved completely. A recent lung function test showed that my lung quality is at 105% compared to others in my age group. I get regular x-rays taken, and all have revealed that there is no sign of any granulomas in my lungs. They are completely clear, and I strongly believe that the MP stopped any possible relapse. I’m exercising again – going on walks and spending time with the family. I have also returned to my pre-sarcoid weight.
Symptoms aside, I think the toughest part might have been watching my family deal with the effects of my illness. I have a young daughter and it was hard to watch her become accustomed to frequently seeing her Dad in bed. As a family, we were also fond of going to the beach. But we successfully worked around these issues. We still went to the beach, but I stayed in the shade and only ventured out at dusk. The beach is actually very beautiful at dusk. During the earlier stages of the treatment where I was quite sensitive to light, I was still able to travel, I just made sure to cover up with thick layers.
As a child and young adult I was very active and loved the beach. I never noticed any problems with the sun at that point. But as soon as I started to become symptomatic I found sun and bright lights difficult to tolerate. When I first started the MP the sun was taboo. I had to wear thick layers when outside. But over time, my sensitivity to light has improved a great deal. The sun doesn’t affect me anymore, although I still wear a hat and dark glasses when I go outside, just to be on the safe side. We have a pool and sometimes I’ll swim for several minutes in the sun with no adverse reaction. I’m sure I can tolerate much more sun than that – I just haven’t had the desire to test my limits.
Last March, I was feeling quite good so I decided to stop both the antibiotics and Benicar. However, in the weeks that followed, I still noticed some symptoms, possibly because I was no longer reaping the benefits of Benicar’s anti-inflammatory properties. I decided to re-start phase 3 and interestingly am experiencing some very minor immunopathology from antibiotic combinations that had previously stopped generating bacterial killing. Clearly, and in hindsight, it was wrong to stop the MP at that point, as I still had bacteria to kill. My experience goes to show that it may be helpful to do a second round of each antibiotic combination in order to fully eliminate the entire bacterial load.
Read all the information available about the treatment before seeing your doctor because you may need to help him/her understand the treatment. The MP is a long process, but be patient because the rewards are worth it. There’s also no point in trying to rush through the healing process. You’ll just put your body under too much stress, which could hurt your progress.
Well, I’ll get to watch my children grow up. Around 2001 when I was diagnosed with sarcoidosis I really didn’t know how much time I had left – it was very possible that I could have died. Now, there’s no looking back. I’m making up for lost time. One of the side effects of being sick for so long is that now I am driven to work harder than ever. I’m traveling a lot for work and pouring as much time as possible into my family and activities. I don’t have much spare time. But it’s all good – basically I’m just enjoying life.
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.