I’ve now been on ABX ten months. I started taking in April/05, three months after my first episode & subsequent diagnosis. Prior to that episode I had no neurological symptoms.
During first 3-4 months of ABX I had some improvements (loss of hermettes sign), which could have been the ABX but equally could have been normal remission after the initial episode. Since September there really hasn’t been any change, despite regular flagyl pulses which I have now steadied at one week every three weeks.
I still have tingling/numbness in fingers, still have trembling/bubbling feelings in legs. I posted once that I thought my double vision was getting better but I think I misjudged what was triggering it, in fact it is pretty constant, coming on when I get to a certain point of over exertion/ over heating. As per previous posts, I think there has been a slight development of new symptoms, none of them striking, but progression none the less.
None of this is terribly encouraging, but at least I’m not progressing in a dramatic way. I’m going to continue at least to 1 full year (a recent email from Dr. Stratton suggested that he is leaning to 3 years for full treatment). My reasoning is that even if there is a chance that ABX just helps me more or less tread water for a while it will be worthwhile in giving me time to wait for other treatments to become available.
My older sister, who has MS, dx'ed at same age, and with similarities in how dx was made, progressed rapidly on CRABS so I’m unenthusiastic about that approach.
I’m taking heaps of supplements, of course, and have also taken up a pretty low saturated fat diet. Its possible that either of these, rather than the ABX, are helping slow down the disease. I am also taking some real measures to reduce stress which, as with many, causes my symptoms to worsen significantly. I have followed thread on stress hormones with interest. The strongest link between my sister and me is real early stress in our lives.
The flagyl pulses are more problematic than they were at the start. The other drugs aren’t bothering me too much, after considerable distress a while ago my stomach has settled down, although it still rather tender and gets upset easily.
Other thoughts. I think my immune system has taken a turn. Immediately after starting ABX I got shingles, and I now get minor cold sores with some regularity (I never had either before). I've no idea why that would be, but I've read that others have experienced same.
On the other hand, after the first weeks on flagyl (during which I got a long and nasty flu) I haven’t been sick at all, rather remarkably, even though I declined being vaccinated and one or more co workers around me have been ill pretty much constantly. In the past, I picked up everything, and always got flu two to four times in winter.
I think my immune system is stronger, either because of the supplements, or, this is slightly fanciful, maybe the ABX are taking care of some bacterial load (CpN or other) and leaving my system free to fight off viruses. I’m not really attached to the immune-system-goes-crazy-and-attacks-itself theory of MS so I think this is positive.
Thats about it.