I've been on the antibiotics six months and so here's a short update. Actually it's turned out to be a very long one, so no hard feelings if you don't read on, I just would like to pass my experience on so that it may benefit others, and of course, it is helpful to express myself, as well:
I have switched regimens a couple of times, unfortunately. The hope was to switch, once- from Doxy+Rifampin+Amoxillin to the regimen recently used in the Vanderbilt Study, Azithromycin+Rifampin. They eradicated CPn in six months and I'm an impatient sort so I thought I would use that regimen, especially since it has been verified in a study.
That regimen is brutal, at least in my experience; it is VERY expensive (the Azithromycin is about $250 a month alone) and it is was very uncomfortable. I later learned that the reason they used Azithromycin 500mg every-other-day is because they only had six months for the trial; one can use 250mg M/W/F and it should work, if treatment is extended to a year. The idea in the trial was to wipe out CPn, FAST, and without using anti-inflammatory antibiotics. It's hard to think why this regimen would be used by anyone outside of a research setting.
But after concluding I couldn't sustain that regimen (cost-wise or side-effect wise, I switched to the most recent regimen out of Vanderbilt per Charles Stratton- Minocycline+Zithromax+Flagyl (and I chose to keep on with the Amoxicillin, see the patent above for the rationale). Unfortunately, Minocycline made me so dizzy that it was dangerous.
So, I'm curently on Doxycycline, Azithromycin, Amoxicillin, and Flagyl. I am now taking the Flagyl much more frequently than 5/30 days. This is up to individual tolerance of course. This is a comfortable regimen and I intend to stay on it for 6-8 more months.
I initially panicked at the switching of regimens, thinking this would be a huge problem in treatment (I envisioned Cpn bugs just multiplying like crazy and having to start over from ground zero), but then I read this in the the most recent patent for treatment of MS with antibiotics
(you should all consider reading this link if you haven't already, it has really great info).
It may be desirable to change one or all of the drugs in the middle of the long-term therapy. Changes in drug combinations may be for many reasons, such as to reduce side effects or cost to the patient, or in response to a change in the patient's condition or degree of infection. Moreover, while it is preferable that the therapy is continuous, it is understood that interruption for as much as two weeks or even a month may be desirable or necessary.
So while it would be undesireable to be constantly revolving the antibiotics, there is no reason to think that changing regimens is a tragedy. On the other hand it is obviously best to find something that works and stick with it. That's what I am hoping to do from now on.
I have had some improvement of my leg weakness and I have had days where I could actually jog, which was incredibly exciting. I also have evolving spasticity so I am not sure about the relationship between the weakness, spasticity, and the antibiotics.
I have also had "old" symptoms pop up- issues that I guess would be classified as mini-exacerbations (a week or so of bladder problems for instance in the content of otherwise consistent symptoms) that happened prior to being on antibiotics and these have certainly not dissapeared completely. My neurologist tells me that this happens even in monosymptomatic clinically isolated episodes, he says that re-appearance of symptoms are 'constitutionally modulated'.
I have had my 3rd negative MRI since beginning treatment and a set of visually evoked potentials that were identical to those taken last year. My neurological exams show no progression. My visual field tests are stable as well. I go into a Tesla 3.0 next month which should be illuminating.
As far as what I have noticed from the treatment, the one thing that is prominent, while on the Zithromax, is that my joints are popping constantly. When I was on the week of minocycline this was even more pronounced. My doctor has patients reporting this with a variety of diagnoses linked to CPn infection; he thinks it is the bacteria dying, causing inflammation, hence the popping. It's chlamydia dying, he says! (He's a great doctor, he seems to relish the death of CPn).
I had decided to re-assess at six months to see if I would continue the treatment, as I have "suspected MS" and this is empirical treatment (although well-justified on clinical grounds). I will continue with the treatment. I have enough evidence that something is going on, to continue. If nothing had happened or I had progressed significantly in spite of it, I'd think I was barking up the wrong tree. Instead I have enough clues and vague indicators that I feel it is worth finishing up.
It is very difficult to assess how I am doing, though. This is only the 2nd year that I've had major symptoms and it is impossible to distinguish between an evolving disease process, side effects from antibiotics, and bodily reactions to bacteria die-off, if that is indeed what is occuring.
I also think it is unrealistic to expect too much in the way of results, quickly, especially if one does not have especially severe symptoms. In the Vanderbilt Study using Rifampin and Azithromycin, "There were no clinical changes." In the minocycline study in Canada, some patients had relapses (and lesions) during the first six months of taking minocycline. And I already have a negative MRI and CSF!
So, in my mind, the idea is to ensure that CPn (and possible Lyme) is eradicated, but to expect immediate relief from 'mild' symptoms is unrealistic. Perhaps others have had more impressive results, I don't know. But my symptoms do not lend themselves well to monitoring of improvement- no L'Hermittes, almost nothing that doesn't wax and wane, anyway, without the antibiotics. And many symptoms that have been with me for over a year now, and may be permanent or intractable. I will re-do the visually evoked potentials in a year, but for many people those remain delayed for a lifetime once an episode has occurred, so they may not reflect much for me. We'll see.
I continue to use the anti-endotoxin measures such as charcoal, chlorella, and Questran, but the effect of these is difficult to measure. If I lay off of them, it seems that I do feel cruddy. But not immediately. And if I take them regularly, it doesn't immediately resolve the issue- it takes time, which makes some sense. So it often seems as if I am feeling the results of whatever anti-endotoxin measures I used several weeks earlier. But even this is hard to assess. Comments on this idea would be welcomed. I guess overall the caution would be, it is much better to use some regularly, i.e., every day, then to take 60 pills of charcoal per day for 3 days and expect to feel better quickly. I have found that this simply doesn't happen.
I wish I could report more but I think that's all for the moment!
I'm still hopeful that this is a very positive intervention I am using, I just don't think it is 'magic' and think it will take some time to see the results.
All the supplements Sarah has listed are important, and I personally pay special attention to Vitamin C (forces Cpn into cryptic mode, 1g 3-4 times a day), Niacin (toxic to CPn), Vitamin D, B12, fish oil, and B-vitamin complex.
To summarize my current antibiotic regimen:
Doxycycline 100mg twice a day ($8 a month)
Amoxicillin 500mg twice a day ($20 a month)
Azithromycin 250mg Mon/Wed/Fri ($100 a month)
Metronidazole 500mg twice per day that it is pulsed ($1 per day)
(Dr. Wheldon and Sarah recommend 5 days per month; I am pulsing it every-other-week myself; it will vary by individual tolerability and bacterial load).
God bless you if you have read this far!