I’ve been on ABX regimen for sixteen months. And I’ve got to say, with a lot of regret, that its benefits for me appear to have been limited.
I had a single neurological episode (with no prior symptoms) in January 05 which left me pretty weak and screwed up. Within a few weeks I started taking ABX according to a regimen provided through correspondence with by Dr. C Stratton (minocycline, azithromycine, metronidazole).
In the first six months I had a lot of improvement, followed by another few months of pretty encouraging stability. Then in March I started to have increasing problems with vision and a feeling that I was going downhill. I continued the regimen and then, at a long awaited appointment at the UCSF clinic a month ago I was told I was told that my optic nerves were showing atrophy. That hadn’t been present before and it proved that I was experiencing a real decline, not something subjective.
It was kind of a shock. I've had to re evaluate the ABX theory, at least as it applies to me.
My guess is that that part of my improvement after the initial episode was inevitable, just the typical remitting part of the disease. And I’m pretty sure part of the improvement was due to a supplements and exercise, which I've been pretty fanatical about.
I think that the ABX contributed as well, but I’d put down money that, at least in my case, its because of the neuro-protective and anti-inflammatory action of the tetracyclines – and has nothing to do with CpN. I think that’s why, in my case, the ABX regimen may have helped slow things down but was unable to address the root cause//and halt the disease process.
Its pretty well established that tetracyclines (including, specifically, the minocycline I'd been taking) decrease the production of substances causing inflammation, such as prostaglandins and leukotrienes, while increasing production of interleukin-10, which reduces inflammation.
That’s why they’re fairly routinely prescribed for RA.
And there is growing evidence that tetracyclines (including, specifically, minocycline) protect against neurotoxicity in animal studies and appear to reduce MS lesions according to research being conducted by University of Calgary. I don’t think its being prescribed widely for this capability, but I think that’s going to come soon (or pharmas will develop non-antibiotic versions of tetracyclines).
So, I think that what I was experiencing with ABX was a neuroprotection/anti inflammation action. I realize CpN is, according to the theory, really resilient and cryptic and hard to erradicate etc but I have trouble believing that the $3000+ worth of ABX I have conscientiously taken couldn't even contain its damage, that I started to have optic degeneration despite it all.
While I’m off the CpN theory, in my case, because I actually got worse during its treatment, I’m going to conitinue taking minocyline. From the very beginning, it seemed like my body “liked” the stuff, and that it was making me feel better in a fairly immediate way. I don't think thats imaginary, I think its consistent with a neuro-protective/anti-inflammatory explanation. And as far as I know, minocycline has no significant risk in long term use.
But clearly I’ve got to do more to recover some of the time and ground I’ve lost. And so I've started to take lipitor, which is really what I should have stressed first in this post, since it was more the thing I wanted to comment on.
I’ve been more and more interested in statins, based on research, and based on some posts on this site. And something has definitely happened even with the very small daily dosage I've been on for the last two weeks --- I just hope its not temporary.
Last weekend, for the first time in a couple of months, I went on a long, hard, competitive cycle and I actually saw clearly - without double vision -- through the entire thing, including a long grinding climb up to the coit tower. That is, actually, unfuckingbelievable. That is something I haven't experienced since my initial episode.
My guess is that lipitor had an immediate anti-inflammatory impact like the minocyline....but x10. I realize that controlling inflammation isn’t a cure for MS, but maybe it can keep things steady until I can figure out something else.
I’m thinking that as long as I feel good I should keep at the lowest dose and keep a step=up in reserve in case I get the flu or something. From what I’ve read, the effectiveness of statins seems to continue over long term use (with the usual risks of kidney/liver damage, muscle damage).