Mamahawk, try not to worry - its true that one can go for a couple of years or more without a relapse, I did when I was in my twenties but after that they came increasingly thick and fast. Al this, though was without any treatment whatsoever. As soon as I started abx in my early forties, it all stopped.
However I posted this only yesterday:
Quote:
"In response to Ken's (Notasperfectasyou's) comment:
Quote:
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:
Quote:
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."
I can't say whether what appeared to be a relapse both times was due to flagyl or not because they were the only two times they occurred. All I can say for certain is that they weren't relapses and nothing showed up in the MRI. It didn't stop me from being worried, though. The strangest thing in both cases was the way the pain the first time then numbness the second, moved around. Also, the left leg incident was really in a new place: my first reported symptom was in my left though, not my knee and below. David thinks that this one, especially, happening so long after starting abx was nothing to do with a live pathogen at all, but endotoxins in the form of dead cell fragments which can linger for years after the pathogen has been killed.
For this reason I don't think you need worry bout having been slack with the pulses. In any case, you are holding the pathogen in stasis with the other two abx: they can't do anything other than eventually die off when their time has come. Of course, you will worry and you will do some more pulses, which is no bad thing because you will get rid of any remaining non-active pathogen that much quicker.
Mac has already addressed to supplements but I would just add that B12, B complex and of course D3 are very necessary for someone with MS, especially someone with the number of lesions you had on diagnosis. B12 especially aids nerve regrowth. Fish oil will probably also aid remyelination.
I'm sure that if your neuro were to see you next month he would still declare you BORING. That's the way to be!
Sarah
Login
Register
FAQ
Search
Nothing showed up, though, so I then spent six months worrying until the next one thinking that it was maybe too early for it to show up and I should wait until the next one. When that arrived, again nothing.