Who are the viral experts, here?

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Who are the viral experts, here?

Postby Minai » Fri Jun 23, 2006 12:08 pm

Hi,

As I mentioned in my introduction, I was waiting on many, many lab test results. Just picked them up. The most notable result suggests chronic EBV infection. As in, very, very high positive results on EB Ab VCA, IgG.

So, I suppose this helps me to decide which direction to head with meds...

Anyone, here, taking anti-viral meds? And/or supplements?

Which forum module should detailed discussion, of this, take place?

TIA (Thanks In Advance)!

Minai :)
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Postby Arron » Fri Jun 23, 2006 2:44 pm

Ian (Bromley) is our resident expert on EBV infections and MS. Or at least I just made him one :twisted:

As for where to discuss it, keep the discussion here in General... if we start getting enough interest in anti-virals, then I will start a separate forum for it.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby bromley » Sat Jun 24, 2006 1:58 am

Thanks Arron - I assume my monthly allowance of $1,000 will be increased to reflect this additional role!

Minai,

For my sins I do have an interest in the role of EBV and MS - particularly as my one real illness before MS was a bad run-in with Glandular Fever (Infectious Mono) as a teenager.

Many have suggested that a virus might be the trigger / cause of MS and EBV looks a strong contender. If you look through the General Discussion board you will find a number of threads on viruses and EBV.

The most recent was this one:

http://www.thisisms.com/ftopict-2433.html

Some anti-virals are in the pipeline but their effectiveness is not yet known.

Some consider that EBV resides in B cells and therapies which target B cells are being trialled - such as Rituxan.

Hope this is useul.

Ian
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Re: Who are the viral experts, here?

Postby CureOrBust » Sat Jun 24, 2006 4:27 am

Minai wrote:Anyone, here, taking anti-viral meds? And/or supplements?

I read somewhere that a drug called valacyclovir was effective to some extent against the infective stage of EBV, I asked if anyone had been prescribed it, but i got no response. In the above thread I think I put a link to an article where it showed some promise in CFS.
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Postby Minai » Sat Jun 24, 2006 12:39 pm

Thanks Arron. Yes, it’s appears as if Ian, the EBV Ambassador, is appreciative of your delegation. :wink:

So, Ian, I must express my gratitude and appreciation, as well. :P

And, seriously, after scrolling thru the thread that you linked; I can’t thank you, enough, for all that you are doing/have done.

I suppose my EBV test results should not really be much of a surprise. My daughter had actually suggested I be tested, because she had been diagnosed with it, less than six months before my MS diagnosis, two+ years ago. But, I didn’t, right away, because I had never tested positive for mono, before. Maybe my late (30 something) exposure in life, as theorized; really does have something to do with my MS diagnosis. And, hopefully, the early (teen) exposure that my daughter had will protect her from MS, too.

Will certainly be reading and re-reading the related threads, here, to be certain!

So much to study and contemplate. B-cell targeting, next.

Was also given various tests for other viruses: CMV, HSV, and Chlamydia. All were negative. Am still considering LDN. Just finished reading “Up the Creek With a Paddle.” Apparently, some with the AIDS virus think it helps. Can’t help to be glad that I was attacked by EBV, not HIV! Such things do evoke my coping mantra: “things could always be worse.”

Yes, so much left to search out.

My neurologist claims that Betaseron has anti-viral properties, too. Maybe that’s why it may have some success? Not enough for me to consent to taking it, tho. 35% success rates seem to be thrown at us, not just for all CRABS, but for most drugs that treat incurable diseases. This is the article that my husband recently gave me, about this. From Business Week:

http://images.businessweek.com/ss/06/05/medical_guesswork/index_01.htm?campaign_id=search

So, granted, maybe 35% success rates can be thrown out there for all un-conventional treatments, too. All part of a seemingly vicious cycle in attempting to treat MS, I suppose.

What also worries me, according to an article that I read yesterday (thought I saved the link, but can’t find it, now); are theories on the possible similarity of EBV genetic coding to that of Myelin. So, maybe a drug that would attack EBV, would also attack Myelin, too?!

Thanks, so much, again for all that you do…and, for helping to steer me in the right direction(s).

Minai :D
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Postby Minai » Sat Jun 24, 2006 12:43 pm

Thank you, CureorBust!

Will certainly look valacyclovir up, too!

Minai :)
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Re: Who are the viral experts, here?

Postby NHE » Sun Jun 25, 2006 4:27 am

Minai wrote:What also worries me, according to an article that I read yesterday (thought I saved the link, but can’t find it, now); are theories on the possible similarity of EBV genetic coding to that of Myelin. So, maybe a drug that would attack EBV, would also attack Myelin, too?!

I think that what you might be referring to is molecular mimicry. This occurs when a virus, or some other pathogen, has a protein which has a structural similarity to another one. In the case of MS, the structural similarity would be with a protein in myelin. Once the immune system starts to target the virus, it will start to produce antibodies against it. One of these antibodies may be to the structurally similar protein in myelin so then the antibodies cross react to myelin. Here's a link to a discussion which goes into more detail.

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ebv and myelin

Postby jimmylegs » Sun Jun 25, 2006 6:38 am

hey minai, i don't think they would use a drug that would also attack the myelin. i don't KNOW this, i think they would figure a way around that problem. i will try to look into it.
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Postby gibbledygook » Sun Jun 25, 2006 10:53 am

You can get valacyclovir from internet pharmacies - I did and occasionally took about 7 days' worth last year with no noticeable results except on my bank balance. Indeed I might have carried on taking the stuff had that plan not been prohibitively expensive. Some of the Pubmed results look encouraging. Here's one:
<shortened url>
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Re: Who are the viral experts, here?

Postby Minai » Sun Jun 25, 2006 5:49 pm

Yes, thank you NHE, that's it--molecular mimicry. And, I've just had the time to take a quick look at what you linked. All very fascinating and exactly what I've been trying to search for :)

Minai
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Re: ebv and myelin

Postby Minai » Sun Jun 25, 2006 5:53 pm

jimmylegs wrote:hey minai, i don't think they would use a drug that would also attack the myelin. i don't KNOW this, i think they would figure a way around that problem. i will try to look into it.


jimmylegs,

Have to wonder if that's the reason that their aren't many effective viral meds in existence. Will have to look into it, too :idea:

Thanks,

Minai
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Postby Minai » Sun Jun 25, 2006 5:57 pm

Hi gibbledygook,

Good to know, thanks!

So, do you take other anti-virals? If so, have they helped you :?:

Minai


gibbledygook wrote:You can get valacyclovir from internet pharmacies - I did and occasionally took about 7 days' worth last year with no noticeable results except on my bank balance. Indeed I might have carried on taking the stuff had that plan not been prohibitively expensive. Some of the Pubmed results look encouraging. Here's one:
<shortened url>
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Postby gibbledygook » Mon Jun 26, 2006 12:29 am

Hi there,

I can't say that the occasional bursts of valacyclovir had any effect except on my bank balance. I took them when feeling very despondent about my walking progression last year. I didn't carry on with them as I was and am still taking antibiotics and the anti-virals were much more expensive. They were also very weird-looking pills - big blue pessaries.
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Postby bromley » Mon Jun 26, 2006 1:46 am

Minai,

Dr Giovannoni at the Institute of Neurology in London told me that S Haahr was at the cutting edge of EBV / MS research. If you open the pubmed article posted by Gibbledegook and click on S Haahr you will find other articles on MS and EBV.

Ian
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Postby CureOrBust » Mon Jun 26, 2006 2:08 am

gibbledygook wrote:I can't say that the occasional bursts of valacyclovir had any effect except on my bank balance.

When i followed this on the net, i have faint memory that this drug seemed to have a nasty profile. when you say no effect (apart from bank balance) I am assuming that you had no side effects either?
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