This Is MS Multiple Sclerosis Community: Knowledge & Support

oo

weel, Iv'e been dependent on oral steroids for over 15 years, In recent years i'vebeen able to wean slowly, finally getting to 10mg/day then everyother day.
I've had 2 rounds of ivsm 3000 mgs each, felt no improvement with either

there was some mental satifaction, how could it not be calming inflammation? Somewhere?

this isn't just exacerbation of sx that came with this infection, it's adding some new doozies. Cognitively i'm doing some weird things, like not heating water for tea before I dispense..things that involve steps..

Bob,

I'm very much in the EBV camp - as a trigger and possible driver of the ongoing disease process. Lots of research papers on this issue in the last year which have been posted on this site. What's now interesting is the role played by Vit D (protective role). Some papers on the role of EBV are being presented at the AAN conference at the end of April. The ACTRIMS conference at the end of May is also focusing on the role of viruses and Vit D.

http://main.nationalmssociety.org/site/ ... MS_program

I have just added L-Lysine 1500mg a day to my regime in the hope that if EBV/HHV6/7 are involved with the pathology of MS that the L-lysine will help to suppress it (I tested positive during a relapse of HHV7 plus I have had glandular fever aka mono (for you americans:) twice.

L x

After reading up on many theories, I am very much in agreement with Marcstk. I think it is because I have never had the "usual stuff", mono, etc. I guess I have some since I get cold sores. However, a genetic predisposition then getting 'turned over' and then it's off to the races. I mean I was a sun child (on the swim team since 6 yo, and always in the sun), but that did change after I went from working outdoors to indoors in my early 20's.

But I DO think that it is evolutionary conditions that are more than likely the trigger. But I only say that because of my lack of an infection anywhere remotely near my MS coming on. I did have scarlet fever as a child, but so did hundreds of thousands of others who don't have MS. I have herpes simplex, but so do millions and millions of others who don't have MS. So then I think that ALL of us in the US are exposed to the modern diet and sanitation, but not all of us have MS. So, to my pea brain anyway, those of us who are put in that environment with hyper sanitary environments and a diet that has lots of 'new' things that aren't evolutionary normal, PLUS have the genetic predisposition can get our motors turned over and off we go.

This sounds over simplified when I read others, but basically the exponential increase in modern diet and super clean conditions combined with having a genetic predisposition to MS can answer almost everything. I guess saying whether it's our diet, or the lack of bugs in our guts can be the point of contention, but I still think that you have to have the genes to have the other stuff kick start it.

So that leaves me feeling like I've already started my motor, so now it's up to me to try and minimize the effects and keep the RPM's low so I don't progress too fast. There's no doubt in my mind that I'm not getting any better, but I do think that if I do as many 'right' things with my overall wellness that I'm capable of, I can just make the ride a little less bumpy; but I still don't think I can ever turn the ignition off now. Not until they find a way to alter us genetically. However, I need hope to keep an eye looking forward with some level of optimism, so I will keep trying stuff. Like looking into the CCVI stuff and the like. I mean who's to say the motor getting tripped over didn't cause circulatory dysfunction as well, and that can be another bump in the road remover. Like I said, since I think it's genetically tied in, I don't think you can ever 'get cured', my hope is to just make it like an AIDS thingy. OK, you've got it, but we can keep you in the same state until you kick off. That's what I see as the only hope I can have in this lifetime anyway.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

oo

Bob-O, first off Go Spartans! I think you really make a good point. I think I sort of made it in the last paragraph of my post right before yours, that we defintely gravitate towards what makes sense to us. However, I don't tknow that their is anything that we can do about that since that is what makes us all different. Your brain is wired dfferent than mine (thank God ), and so on. Hell, I don't even know how strongly I feel about some of the stuff I'm looking into. Not that it doesn't make sense, but just that it isn't 100% clear to me' but that's understandable! So if I have to take a little bit of a leap of faith, so be it; it gives me some hope. I think you're rigtht that we are going to be passionate about facts that support our particular theories, but what I think you are describing is simply the human condition.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com

Bingo. I am biased towards the non autoimmune model, but in 18 years I have come 180 degrees from "autoimmune" to definitely NOT. But these days, as you say, when I read an autoimmune idea my brain tends to shift into "been there, done that" and I glaze over.

But I remember that Scientific American had a whole issue on immunity in '93. I bought that magazine and poured over every word, especially focused on the vaccine for MS information. I thought back then that THAT would be the real cure, I expected it in a few years.

Tovaxin finally has been trialed and it did not pan out the way it was hoped. Even though by '03 I turned coat to non autoimmune, I was still disappointed by that failure. It was so targeted; I liked that because even if we are off base about the cause of MS it would not damage immunity overall, it would have been relatively safe. But for me it just added fuel to my "non-autoimmune" fire.

For others it is just a matter of "wrong epitopes".

Same data, different conclusions.

Notice that researchers rarely ever do dramatically different work either. They too come out with more along the lines of their previous work. The next paper we see From Lucchinetti will be on lesion heterogeneity and Chaudhuri will write on non autoimmune ideas. There is huge inertia in the research community because people don't research one side of an issue then do a paper from the other angle; they'd make their own work meaningless if they did so. So they support their previous work with more of the same stuff attempting to add enough weight to make their ideas become accepted as "fact".

To me, in general, it feels like we keep treading the same tired ground.

oo

Hey Bob,
I haven't been around and I just found the post. Like some others who have responded, my attacks have come hand in hand with cold sore breakouts. Coincidence (?) maybe, but I can assure you that when I have a HHV flareup, I have an MS flair up (or visa/verse). If it were possible to "see" the effects of EBV I would guess it flares in conjunction with MS as well. I'm convinced that stress = HHV flareups as well as MS flareup, which comes first the chicken or the egg? Maybe it is a trigger, maybe it is the cause but the direct relationship is to powerful not to consider it the Elephant in the room. I will be first in line for the clinical trial.
Be Well,
Lars
PS sorry about MSU!

oo

Stress definately caused my last 2 relapses. I know exactly when they started and the serious stress I was under for each one. I could have predicted the relapses arrival.

oo

FYI

Human Herpesvirus:
•Herpes simplex type I (HHV-1)

•Herpes simplex type II (HHV-2)

•Varicella-zoster virus (VZV/HHV-3)

•Epstein-Barr virus (EBV/HHV-4)

•Cytomegalovirus (CMV/HHV-5)

•Human herpesvirus type 6 (HBLV/HHV-6)

•Human herpesvirus type 7 (HHV-7)

•Kaposi's sarcoma herpesvirus (KSHV/HHV-8)

They belong to the following three families:

•Alpha-herpesviruses: HSV 1 & 2; VZV - these have a relatively short reproductive cycle, variable host range, efficiently destroy infected cells and establish latent infections primarily in sensory ganglia.

•Beta-herpesviruses: CMV, HHV-6 and HHV-7 - these have long reproductive cycles and a restricted host range. Infected cells often enlarge. Latency can be maintained in the white cells of the blood, kidneys, secretory glands and other tissues.

•Gamma-herpesviruses: EBV and HHV-8 - these are specific for either T or B lymphocytes, and latency is often demonstrated in lymphoid tissue.

Bob,
Following your evolutionary norm theory, what do you suppose would be the evolutionary abnormality of Colorado?. The land of fanatically fit people has a freakishly high rate of MS given it's latitude placement. Our local group which is swelling by the day is 20 miles North of the 37th parallel. Must be all the clean air and healthy living. Or the alternate theory that we have given each other HHV. After all, we are all really close friends here ( I don't think there is an emoticon for this one).
Lars