In April of 2002, I developed a bout of nausea that was unlike any other I’d experienced, leading to whole body weakness and a host of feelings that I can’t really describe and shudder to remember. That evening I had a seizure and passed out trying to get to the bathroom. Everything went haywire and I was in bed for a week.
This began a long, tortuous, isolated and frightening path to wellness. I had a laundry list of symptoms that doctors (especially HMO doctors I had at the time) shrugged off or could not explain; one simply told me I’d just feel like this forever and to look into disability. Needless to say it took great effort on my part, in my brain-fogged and weakened condition, to do research and figure out what I had. It went from Reiter’s syndrome to Giullaine-Barre, then fibromyalgia and chronic fatigue, and then a few more things I don’t remember. I found the New Arthritis Breakthrough and its conclusions sounded reasonable to me. Along with online research I managed to get a sympathetic HMO doctor to give me minocycline, which, for whatever reason, I only took for six months or so before dropping it.
From the Roadback site I found a Seattle naturopath that was familiar with antibiotic therapy and other alternative treatments. By 2003 I was very ill and only working part time, in constant pain and unable to control my movements very well. The doctor’s suggestions seemed well-meaning but I didn’t see any immediate results.
I was able to change insurance and found other doctors that were more thorough and interested in helping me. I found an osteopath that gave me IV’s, but was convinced I had a hormonal and kidney problem. He did find an elevated CPK of 700 and a myoglobin in the 200s and concluded I had polymyositis. He didn’t want to pursue the antibiotics, and gave me a steroid that made everything so much worse that all progress I had made to that point was erased. But at least I had a diagnosis I could use with the naturopath and other doctors and work from there.
The naturopath prescribed doxycycline, 200mg a day, along with a battery of vitamins and supplements that I added to a program from Teitelbaum, whose chronic fatigue book I can’t remember the title of. The basic story after that is my myoglobin returned to normal quickly (which was the scariest part and the biggest relief), and my CPK stayed in the 200-300 range, but was generally going down.
From 2003 to 2005 I gradually got better. In 2004 I went back to school for retraining, which was incredibly difficult, but from quarter to quarter my mind sharpened and it no longer hurt to sit through a class. I would have bouts where I felt far worse than before and would have to claw my way back, not really knowing when things would happen or what turned them around. I tried flagyl in the summer of 2004, and this was so hard to take I could only manage it for a month. From the reaction it inspired it appeared to be effective against whatever I had.
At the end of 2004 I finished my certificate and went looking for a job, wondering if I’d be able to manage working fulltime again. I started a job in early 2005 and just continued to gradually feel better (working and no longer feeling like a sponge on my wife no doubt helped, even when I would have bouts at work and no idea how I’d get through the day). Overall I felt close to normal, with the remaining problems now a strong nuisance more than debilitating, the worst of these being fatigue. In the fall I switched to minocycline and things seemed to get much better a lot faster.
When the job ended on December 1, I realized I felt more or less well. I took a road trip to visit my parents and friends in Texas, and spent a couple days at the beach–wondering in the back of my mind if I would suddenly deteriorate, but nothing negative ever happened. I slept well and enjoyed the trip in a way I hadn’t enjoyed things in a long time.
Since then I have pretty much stayed in that pattern. My labs have been normal, and when the CPK jumped from trying to cut the mino too fast, I went back to the full dose and it was normal in a couple weeks again. I only rarely (maybe once a year) have feelings of falling back to the bad old days. My biggest problem is a persistent fatigue, but this may be due to the minocycline and another drug, both of which I am trying to gradually eliminate. I exercise regularly, eat well, and keep up with Pauling-levels of Vitamin C, which I credit earlier this year of turning around one of those regressions. In retrospect, I wonder if Pauling-level doses of Vitamin C from the outset would have saved me years, or this entire episode.
At any rate, I wanted to post my experience and let people know it is possible to recover. I’m happy to answer questions or emails.