GMI,
What if the cause was identified and could be completely halted, but the damage was not removable? I imagine there might some cancer or cardiology analogies here.
Ken

Stopping the disease would be great for all of us. But it is not a cure until we have our pre MS life back, in my opinion. That will require neuro generative repair.

I know that you spend a great deal of time on many MS forums, but you do not have the disease. If you had it for 3 or 4 decades, you would realize that the old timers who have severe, life changing conditions are not as eager to claim any "cure" that does not repair damage.

Your wife seems to have a relatively mild case of MS now. She would be a lot happier with something that stopped her progression than I would be without the added repair equation.

Come back in 20 years and let us know if your opinion as to what a cure is has changed.

gmi

Thanks GMI,
I'm not certain that I have a specific opinion of what a cure would be; I just think it's on oft overlooked thing as we think about MS. I suppose what I'm saying is that it's something we all want, but we don't talk about it.

Regarding Kim, she is improved, though, one never knows. We have a bright and shiny red Hoveround scooter that she got before her once-in-a lifetime shot at Novantrone. Being SPMS and taken off Novantrone was very hard and deeply painful for both of us. So while I don't have MS, I dedicate much of my life to it - everyday and I'd gladly live with MS if it meant Kim wouldn't have to anymore.

Ken

I was first DX with MS at age 35. I then was in remission, symptom free and absolutewly no progression of the disease for 18 yrs, when, at 53, I had my second exacerbation.

Was I cured?? No!! Dr Weiner can call it what he want's, but remission is NOT a cure.

I wish your wife a long remission.

Thanks Sally,
Have you been symptom free since the second one? It would be a really great thing if we could all hold back the effects of MS like that. Do you attribute that to a particular intervention? I'm always interested to know what works for folks.

Kim had exaserbations with recurring frequency, about one every year or two, including while SPMS on Novantrone. She's had a lot of 5-day Solumedrol drips, so for her - going 27 months with no relapse is a significant change from a well established pattern.
Ken

From what I have read, any type of real cure or any med that really works to ameliorate symptoms is a long way off. I am sure I will be long dead and planted before this day arrives.

Just getting through the day, week, month or year takes up my energy now. Wondering about a cure is not on my "Bucket List" of things to do before I croak.

I do not intend to minimize your legitimate question, but the infamous "just around the corner" speech that most of us MS'ers have heard no longer means beans to me.

gmi

I was on absolutely no medication or special regimine while in that long remission. After my attack in 1993 at 53, I had IVSM and pretty much went back into remission......but, it was short lived..

I then tried Avonex, then Copaxone, but progressed, in the next 4 yrs, to SPMS.. I discovered LDN in 2003, but, since I was already SPMS, It wasn't as miraculous for me as it was for the RRMSers....but It did stop/slow the progression again, for me.

LDN is not a cure but sure closer than the other DMDs.

Question...How long is a person suppossed to keep taking the ABs? Forever? and....What is the longest someone has been on the Vanderbilt meds and stayed cured/in remission.

Thanks,

I understand. Trying stuff can get old. I thought for a long time that Avonex was the greatest thing on earth. Then it was Copaxone. Then Novantrone. I've gotten all pumped up over Tovaxin and I'm interested in CCSVI now. I've been, at times, completely fed up with everyone's ideas about MS and what to do. I doubt a cure for everyone's MS is near. But I know a lot of folks are trying to work on it and I'm confident about that.

So, I don't expect the neuro to call us one day soon and tell us that we need to come in for the cure appointment, but I do think that there are a lot of puzzle pieces to be looked at and that trying things, albeit frustrating, is an important part of the journey toward a cure - no matter how you define it. Ken

Sally,
I should be clear about 2 things, 1) I started this thread to really open up the idea that maybe it would be thought provoking to ponder what "cure" might mean - I'd start a totally different thread if I wanted to really talk ABX details, 2) I don't pretend that this is my idea, I just hope to share and shed light in a new place.

One case has been posted here before. I did not know this until you sparked me to do a search on the boards. Here's the link to the original thread, "Some Research Finds Over 70% Of People With MS Have Cpn Infection". There's a little article I've found about Sarah's case in Hosptial Doctor from 2005 titled, "Ignoring the evidence". Sarah is no longer on ABX and she is still improving. It is very easy to find her on the internet. The protocol is a developing thing. For example, pyruvate was added recently. This makes it difficult to say how long one needs to be on it. But, I think Kim will be on it for 4-5 years.

There are others. Most post and share at websites that are have forums for those taking antibiotics for MS. There are other anecdotal stories about folks who are doing well, improved and more abled. Most people would not generally stick around a website that isn't friendly to them or their ideas. For example, I recently read on another board about a member who was leaving over inflamatory language. I know I can't share Kim's story if I'm only going to share it with folks who agree with the regimen.

It doesn't work for everyone - but it does work for some and isn't some folks recovering from MS better than none?

Thank you for your comments. Ken

Ken, you misunderstood, if you thought I was being argumentative. I used to follow the ABS thing at another forum, years ago and just hadn't kept up with it. My question was genuine.

Thanks