This Is MS Multiple Sclerosis Community: Knowledge & Support

Southwestern Washington. Thanks, I'm glad I'm here too. One of "us" took her own life when her MS got to severe.

I grew up on a farm. Farmers daughters are exposed to all kinds of crap from chemicals for the fields to amend the soil to creosote coated timber for our fences--we put in miles of fences-- to all kinds of things to keep your animals healthy. The neirghbor may spray his strawberies or raspberries too. It is not all that clean in the heartland these days.........

The whole school was 4x 36 cause each class had about that many kids in it, two of us were in my class, one in each of the two years ahead of me.

"clusters" like that are known it is of course one of hte things that ebv or other germs are hinted at as a cause. Did we get a particularly virulent strain in my little town? who knows.

Marie, that is really sad about your classmates. It is interesting that 1/9 of your class ended up with MS. It is pretty close to the numbers in the study (below), which puts genetic susceptibility to MS in a really clear way that I like,


"The Causal Cascade to Multiple Sclerosis: A Model for MS Pathogenesis"
Douglas S. Goodin, Department of Neurology, University of California San Francisco, San Francisco

http://www.plosone.org/article/info%3Ad ... ne.0004565

Interesting dignan! There has to be a reson why some of us get it to do with genetics

BTW both me and the girl who was in my actual grade year that had MS were "transplants". We are not all inter-related there, just in case anyone wondered

Hi,

EBV and MS have been worked over as a topic for a long time. Even the US Army did some interesting work (see http://www.mult-sclerosis.org/news/Apr2 ... Virus.html )
On the regime section of the forum I have said a couple of things about using a combination therapy of Valtrex (acyclovir ) and Avonex which I have had a lot of success with over the years. There has been work done at Australian Universities which indicate there is a cluster of around 8 genes which occur in people with MS and that people with MS are less able to control flare ups of EBV in their systems than the general population. I'm neither a scientist nor a doctor but I have been able to control my MS through a 10 year period by assuming that EBV has a role and using acyclovir helps prevent it replicating. On it's own that is not enough. I use Avonex to modulate my immune system as well. I remain perfectly healthy as long as I use both. I deteriorate after 5 or so weeks if I cease taking either medication. using both I recover quickly and stay well.
I didn't wait for the proof that what i do is correct but it works for me. If it wasn't effective I would have stopped.
I hope this is of interest to you.
Best wishes

Scott how Avonex modulates immune system, it is immunosupressive and while acyclovir protects you from viruses is avonex that needs it as supplementary medication, am I wrong?
If you take for example copaxone your needs for antivirus drugs all the year will be much less not to mention LDN and other drugs that stimulate immune system!
And copaxone has same effectiveness as interferons although I am not a big fan of both.

Hi,
I have no idea if you are right or not. What I do works for me. It maybe a variation is better for you. My very simple assumption is there is a genetic problem that is unleashed by a viral trigger. People with MS have trouble managing the trigger compared to the general population. I don't care how I make my system remylinate faster than I demylinate as long as I do. I do care that I interfere with the viral trigger. It's just a guess that it's a herpes family virus but assuming thats right leads me to acyclovir as it interupts the cycle of that family of viruses.
I'm staying well doing this but I never, ever assume I am cured because you can't really get rid of a herpes virus and modulating my immune response doesn't change my genetic makeup. The tablet is easy for me take and the injection is tolerable but still an inconvenience. All we can do on these forums is try and tell each other what is working and what isn't. I'm not qualified to comment on other treatments, I just know this combination is very effective for me.

Regards

Sorry Scott I didn't want to mess just writte my thoughts!

No worries,

You're not messing. I'm just not qualified enough to know if there is a better way to do what I do. I just know it works for me.

Just poking around for EBV info and found this book on amazon: New Developments in Epstein-Barr Virus Research, 2006.

The preface and first chapter are available online here.