In response to Ken's (Notasperfectasyou's) comment:
What’s interesting to me is that much of the side effects of CPN die-off could easily be confused with an exacerbation. Weird crap can happen in an exacerbation and die-off isn’t to terribly different. It seems to me that both are grounded in inflammation brought about by one thing attacking another thing in the CNS. Along this line of reasoning, I think this is a problem for folks in the “learning” stage.
Robbie asked:
In people with rr ms is there a difference in an mri that is taken during a relapse as opposed to one taken during a remission and if so could this be used in a case like this to determine weather it’s die off from abx or it’s ms causing these conditions.
My experience here is relevant: I had progressive disease with relapses and became an open-ended add-hoc trial of one, performed by the radiologist and my husband, the microbiologist. To this end I was given four MRIs over a two year period, charting improvements or otherwise. The second MRI in this sequence was done somewhat after six months, and at very short notice. This was because they wanted to use the same machine and the same radiographers each time and this had to be fitted in around all the other hospital business. The result was that I was nearly at the end of a flagyl pulse when told I could have the MRI the next day, so I stopped the pulse immediately and was incredibly worried because I was experiencing the only real reaction to the drug that I had gone through. I was experiencing pains in my still coming back to life right arm of bone breaking intensity. It was reflex sympathetic dystrophy, a neuropathic pain with its roots in the central nervous system, not the peripheral nervous system. Of course I was worried what of this might show up on the new MRI.
I needn't have worried because nothing new showed up at all, only the fading of intensity of the newer lesions which had still been active at the time of the previous scan. This was repeated six months later, with even more improvements. The same six months on again, although this time I had more reason to worry because I had been kneeling on the floor of my studio and discovered that my left knee was complete numb. I was due for the scan two days hence and having become somewhat blasé by this time, I was halfway through a flagyl pulse, despite being on intermittent therapy by that time. The numbness in the knee had stopped by the time of the scan but it was reappearing in various parts of that leg and this continued for another week. All that was found new this time though was that some of the most recent lesions had actually vanished.
So twice I had what many people might have taken to be a relapse, both times I was taking flagyl, but it didn't show up at all on the scan.
So from this all I can say that what I thought was a relapse wasn't, so when you suddenly deterioate during a flagyl pulse and only then, you can be pretty sure that its the flagyl, not the MS.
Sarah
