David Wheldon has commented recently that the stories of bad side effects may scare people away from the anti-Cpn protocols, especially people with early MS, in whom the side effects can be expected to be mild. So I'll try to do a bit to counterbalance the stories of bad side effects by relating my own experience. I suppose that as far as orthodox medicine is concerned, I am in the "probable MS" category, as I have had only one attack, which produced numbness in my feet and in one leg. As an injury, it was no big deal: the worst it did was to make my walking a bit clumsy (due to lack of proprioceptive feedback and thus loss of fine motor control, not due to motor neuron injury); and even that only lasted for a couple of weeks (although residues of it were perceptible for months). My sense of muscle position was the only sense affected by the numbness; heat/cold, touch, and pain were unaffected.
So I started antibiotics mainly for the purpose of prevention. I have been surprised to find, instead, that I'm being cured. Mentally I've sped up; my thought processes are something like 25% faster. This is something nobody promised me, but it is most welcome. It makes itself apparent in rather odd ways, since I'm looking at it from the inside: what it looks like to me is that the world is slower. When I'm operating at my own pace -- as I am doing now, for instance, in writing this -- little change is apparent. I first noticed the speedup when driving a car: somehow it had become easier; it was like I had a bit more time to react. The speedup is not confined to motor skills; conversing with others has also become easier. It had never been hard; but now it is easier. My memory also seems a bit better, too.
The curious thing about this is that I started antibiotics six days after the first signs of numbness. (I asked my general practitioner for antibiotics, in case it might be Lyme disease; he prescribed doxycycline.) So I don't know what the natural course of the disease would have been; the numbness was still spreading up my leg as I started the doxycycline, whereupon it halted. Its onset did seem to be petering out anyway, so its halt could easily just have been a coincidence; but maybe not.
It might be thought that this start of antibiotics might serve as a model for early treatment. But in my opinion, I started treatment far too late. I don't know whether treatment should have started five years ago, ten, or twenty; but this disease has been slowing me down for years, with an onset so slow and insidious that I scarcely noticed it. The "brain fog" associated with MS occurred in me, it would seem, even before the first attack -- a time which is seldom studied, because it is impossible to identify people who are about to have their first attack in order to study them.
To doxycycline I had little adverse reaction: a day of feeling tired and woozy, after which I felt quite good. After about two and a half months of it, I saw a neurologist who specializes in Lyme disease. He did a very thorough series of tests, including a spinal tap and MRIs. All the Lyme disease tests came back negative -- they were quite appropriate, as I'd had the characteristic Lyme spreading-bullseye rash three years before; but evidently the mounds of doxycycline I'd thrown at that rash at that time had been effective. My spinal tap was normal (no oligoclonal bands, no myelin basic protein), except that the level of IgM antibodies was elevated. My MRIs showed one demyelinated patch in the lower spinal cord, maybe one more in the neck, plus three or four in the brain (one "very small", the others "very faint", according to the radiologist's report); none enhanced with gadolinium.
The neurologist put me on minocycline while waiting for the test results, and I've been on it ever since. A few days before starting minocycline, I started on 4000 IU/day of vitamin D3, which seemed to add considerably to the antibiotic's potency (or else minocycline at 200 mg/day was more effective than doxycycline at 400 mg/day). Certainly the vitamin D improved my mood; it has given me (and this has been quite constant) the sort of aggressiveness I'd always associated with rednecks, jocks, and others who spend lots of time outdoors. In any case, I had another couple of days of feeling a bit tired, then a period of about a month when I was experiencing a variety of weird little neurological events: a muscle twitch here, a stab of pain there -- nothing seriously unpleasant, just curiosities. There also was a strange mental feeling, which as it became stronger resolved itself into a mild anxiety. For a while I figured that my anxiety was normal given my situation; but when one day I flinched at a not-so-loud noise, I realized it wasn't normal. (I now suppose it must have been from porphyria.) But that was the worst of it, and it wasn't particularly bad at that. Eventually the strange mental feeling and the weird little neurological events died away; and that is when I found myself starting to speed up mentally. I found cpnhelp.org at about the same time as I started the minocycline. On my next trip to the neurologist, he consented to add azithromycin to the mix; that was after a couple of months of the minocycline. It resulted in a few days of mild tiredness, after which my slow upward trend continued.
After a couple more months, I was feeling really good: I had a generalized sense of well-being which I hadn't had in many years, and was seeing hints of cardiovascular improvement. This, of course, meant that it was time to start Flagyl. My neurologist was a bit resistant to prescribing it, and cautioned me to take care with it. Given the stories here, I was in that sort of mood myself. I decided to escalate it exponentially, trying just one 500 mg pill at first, then waiting a couple of weeks, then for the second pulse taking two pills (one in the morning, another in the evening), then for the third pulse taking four (over two days), and so forth: never taking more than twice what I'd taken on the previous pulse. This caution seems to have been worthwhile: the one pill had very noticeable effects, two pills was getting into uncomfortable territory, and with four pills I felt worse than at any prior time during the treatment (although the feelings were still manageable). It has also been worthwhile as a confidence booster: with just taking Flagyl for one or two days, after the immediate reaction to the stuff dies down, each time, I have felt extremely good for two or three days, before a delayed reaction gradually sets in. If I had taken the stuff for five days, I think these high points would have been obscured by the overlap of the immediate and the delayed reactions. Taking it just for a day showed me very quickly that there was more than just suffering to be had from Flagyl. I would have continued with it even if there had just been suffering, at least for quite a while, since I've looked into the theoretical basis for this treatment fairly deeply; but others might not. In any case, it is now time for a fourth pulse. I plan to repeat the two-day, four-pill pulse, and then extend it to an additional day or two if I don't feel too bad at the end of the second day.
At the same time as all this has been happening, I've been dealing with a mechanical problem with my neck, which has produced its own set of foot and leg neurological symptoms. But that's another story, albeit intimately linked with the above; and that problem is getting better too.