Thank you for the input Sarah
, I have no idea what the actual choice will be next what I might qualify for and what might be possible. I am just beginning to look at other possibilities, and do not know what I will do. Certainly nothing with severe consequences to myself.
No I am not keen on Campath and it's long term outcomes for SPMS! The difference between revimmune and Campath is that campath has profound lymphopenia years out and revimmune allows the body to return to normal funciton immune wise. I think it was the ongoing suppression that was problematic for the SPMS patients in the Campath trial.
I honestly worry what the long term consequences will be for the aggressive suppresive therapies. you need your immune system to fight cells that turn cancerous every day, you need it to fight germs and disease. It is a good thing, not something to be despised and killed.
It is almost like there was one bad cop in a city so they wiped out all cops as if all were bad and that would solve the problem. Yes, the bad cop is gone.............but at what cost?
ANd yes antibiotics helped a large number of things for me, they really did. All you have to do is read my blog here and on CPn Help(dot)org and it becomes obvious there were lots of reasons to feel good about doing the treatment and to feel I was making decent progress. I had kind of gotten to the point that I was ready to accept that my motor losses were related to permanent nerve issues and I was going to need stem cells for that, but an exacerbation and new losses were just not expected by me on abx.
Everyone in my family now agrees that the motor losses this fall are real and significant. Really, up until August, the two year mark for me, I was feeling that I had stabilized and had not progressed. It was the exacerbation in September that changed everything.
My MS is my personal experience of worsening symptoms, and in the end how something works for me can only be determined by acknowledging how something has done in the task of stopping motor losses.
BTW I was on copaxone too, so it is not like that stoppped it either.
And people on every other treatment may also have exacerbations. To my knowledge there is not ANY treatment to date that stops all exacerbations in all patients, although it looks like some people get that from revimmune...but not all!
I repeat that antibiotics were a perfectly reasonable choice and I am glad I did them and I am still on them with a few tweaks so I can fele better think more clearly and otherwise get what I had from them.
I am going to edit this so not to bump it up.
I got MRI's in spring of '08 after three years of abx--no new lesions, no inflammation no enhancement at all. The neuro doctor says I am SPMS and that is expected, he is and has always been against the abx idea.
but the previous MRI, just BEFORE starting abx showed slight progression, even though it had been merely a year since the previous and this new one with no new anything is a THREE YEAR span. OTOH I have progressed clinically, my drop foot is dropsier.
I did write to Dr Kerr at JH about revimmune and sent my MRI. THey said essentially that my MRI shows too little inflammation, they would not esxpect it to work. I also discovered that the people who post on the revimmune board are a little too....enthusiastic.....let's say. There have been 20 patients treated and reported on with MS by JH, not "hundreds" And only about half of them actually arrested the disease, though they hope at JH to improve those numbers with copaxone in the after stage of treatment.
At this point though the idea that hundreds have been treated with revimmune and that all patients arrest the disease is false.
I am pleased that I took the time to evaluate the possibility of other treatments. My recent exacerbation of symptoms has to be taken seriously, I cannot complacently ignore this,I must re-evaluate where I am and make a new decision based on what I know now.
here is what I decided: There are no good treatments with high success rates out there for SPMS. There remains no good proof that suppressing immunity slows MS appreciably, though there is a fairly high number of toxic side effects for those same drugs. ie novantrone can result in heart damage (all 4 patient my neuro prescribed it for got that and only 1 was helped by it at all) and it can also cause acute myelogenous leukemia which will kill you. Tysabri is not even approved for SPMS, but doc offered it even while saying same breath it won't help, because there is nothing else to offer.
I choose to stay with abx, and to bump up the regimen to something more aggressive similar to Daisy's kitchen sink strategy.
I have been trying to get up to full doses as recommended by Stratton on Biaxin of 500mg 2x day. This has been very hard to do, I do not feel well on that dose and it has taken all summer to get comfortable on one 500mg a day along with doxy. I am oging to stop posting on this here and post on CPn Help(dot)org for the rest of the time. I jut wanted to close out this corectly...........