This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi

I'm new to your forum. I was diagnosed with MS 14 years ago and my symptoms were double vision, loss of control of left leg and extreme fatigue. Originally I was treated with Prednisolone to get back on an even keel but clearly it was not a long term solution. Over the next 2 years I became substantially more fatigued and developed severe cognitive problems as well. It was not a pleasant time. Being remitting/relapsing meant I recovered but was always a bit worse than before the previous attack. When Avonex first became available In Australia I started taking that. Initial side effects were rigors and 36 hours of quite strong flu like symptoms. I persisted with the treatment but found it very uncomfortable.
After 2 years on Avonex I was neither worse nor better.
I had read a great deal about the association between EBV and MS. One day I found some pictures on the internet of AIDS patients whose tongues were covered in a thick coating called Oral Hairy Leukoplakia. This is the only physical manifestation of EBV. My tongue had been coated like that since I was 15. You can't scrape it off, it never clears up and it creates a slight metallic taste.
By this time, I had dumped all the Neurologists as expensive scrip writers and was getting my Avonex from my local doctor. I took the information I had collected about EBV and pictures of my tongue to him and he suggested we try the anti viral, acyclovir, as a low dose tablet called Valtrex. I took one Valtrex morning and night. After 3 days I felt like a big fog had started to clear and soon found my Avonex injections were far easier to tolerate. Over time I continued to improve. I discovered that I could drop either the injection or the tablet for about 5 weeks without slipping backwards. Increasing the dosage of Valtrex when I felt particularly poorly also helped.
I have follwed this routine for about 10 years now with no ill effects and I rarely think about having MS. I work an 11 hour day and eat normally and do Pilates twice a week at quite a high level. At nearly 51, I'm happy with that.
MRI's show some of my lesions have resolved.
I never, ever think I am cured. I assume the beast is in it's cage.

I assume that the Avonex modulates my immune system to ensure that I remylinate faster than I demylinate. Although I have no evidence, I assume that if I use the Valtrex to ensure that my new cells are virus free I will over time lower my Viral Load and give my immune system less to worry about.

Essentially, I remain symptom free with 2 Valtrex per day and one Avonex injection per week.

By accident, I have stumbled on your site and thought you might find what I do of some use. Good luck to all of you.

Hi Scott,
Welcome to the forum. Thanks for sharing your story. There has been a lot of discussion in various threads on EBV which can be found using the forum's search utility.

NHE

I'm glad you've had such success with valtrex. I have also tried this for about a month and noticed no improvements.

_________________
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Hi,

I may not have made myself clear. Valtrex on its own seems to do nothing but in combination with Avonex there is a significant improvement compared to using Avonex by itself. Avonex on its own did not do much either.
Regards

Scott-
Glad you found a combo routine that has kept you in remission. Thanks for sharing! My husband was told he had a "geographic tongue"...had bumps, but not white like yours. His has smoothed out since beginning copax and supplements.

Here's a pick for those who are curious about "hairy tongues" and EBV-
http://www.aegis.com/topics/oi/oi-ohl.html

The tongue can "speak" so much about a person's health. Funny how few docs even look at it!
Stay strong and keep checking in,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Scott, that's really interesting. There was a trial of valtrex for MS that failed, but I haven't seen anything at all even discussing the combination of interferon and valtrex. They're both anti-viral, kind of makes sense to me that they could work well together. Thanks for sharing your experience.

Hi Cheerleader,

I don't think my tongue was quite like the picture on the link. That looks more like the infection a severely compromised immune system would have (eg AIDS). My was more like the geographic variety your husband has. Perhaps he should try the Valtrex just for that. It's such a relief when it clears up. Everything tastes so much better.
I don't doubt that my approach may not work for everyone. It's not a magic bullet but I do think after all these years I'm not having the worlds longest placebo effect either. It is not a cheap treatment but it is helping me. I can't emphasis enough that I think it's the combination rather than the individual treatments that make it potent.

Maybe I'm on the right track. This came out today.

AUSTRALIAN researchers have made what may prove to be a key discovery in the hunt for the cause of multiple sclerosis by finding that patients with the degenerative nerve condition cannot properly control levels of the Epstein-Barr virus, which causes glandular fever.

About 90 per cent of adults have EBV, a lifelong infection, but most have immune systems that keep its levels under control.

A team from the University of Queensland has found the immune systems of people with MS are less effective at killing off EBV-infected cells. The weaker this ability, the younger the age at which MS tends to strike.

The findings add weight to theories that EBV plays a role in triggering MS. Previous studies have shown that people who have never been infected with EBV do not develop MS, and a study last year found the brains of MS patients had abnormally high numbers of EBV-infected cells.

More importantly, the new Australian study raises hope that the vaccines and antiviral drugs that are being developed against EBV could prove useful in reducing the numbers of people who develop MS, or in slowing the disease's progress.

Michael Pender, professor of medicine at the University of Queensland and lead author of the research published in the Journal of Neurology, Neurosurgery and Psychiatry, said the findings were an important step in understanding the cause of MS.

"The significance of our work ... is that it opens that possibility that by controlling EBV infection, either by vaccination or antiviral drugs, we may prevent MS or stop progression of the disease," Professor Pender said.

About 35 per cent to 50 per cent of adolescents and young adults with EBV develop symptoms of glandular fever. There are no vaccines against EBV nor treatments for glandular fever, but both are in development.

Professor Pender said those who developed glandular fever were at a higher risk of subsequently developing MS, but the overall risk remained low.

Aha! Finally found this post, I cannot believe it but I managed to finally (after 11 years) get Valtrex from my neuro today!
Just a 5 days 2x500mg trial and without the DMD, but still. I don't particularly want to go back on Avonex and have asked about trying Copaxone again this time but they demand I have a C-Spine MRI first... fair enough!

From what Scott has said, would Copaxone not be doing the right thing where Avonex might be?

If the Valtrex doesn't work on it's own at all, I will ask to try again when on the DMD or hopefully find a tolerable way to push forward with the Wheldon ABX protocol. Dr W is willing to discuss how to do that, so that's great news.

This is just a relief to have a neuro behind because it's something I want to know how well/badly I tolerate it solo before starting such a long term protocol, and if it has any effect alone

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Well that was confusing, did the Valtrex trial and am none the wiser as I spent most of it with heart and breathing trouble - and not a clue whether it was down to the Valtrex or just part of a rough MS/CFS time

I hate it when that happens, things just collide and you can't separate what's causing what, it basically nulls the trial out

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Hi Interrupted,

Just by chance I looked at this website again and noticed your post. I would check with the person who gave you the Valtrex about Herximer responses. Your discomfort sounds like it. Basically, whatever the Valtrex attacks in your system releases toxins as the Valtrex starts to work. THis makes you feel worse but as the underlying viral infection weakens you should improve. The normal way to deal with Herximers is to lower the dosage but persist till you feel better and then increase the dosage again. 5 days seems a token response by your doctor. I have been continuing to take one tablet morning and night and still remain well. I had an MRI done two weeks ago and it showed I still have 4 lesions on one side and 7 on the other. I still believe this is not a cure but it has kept me very well now for many years. As I have said in the past, it's the combination of Valtrex and Avonex that I believe does the trick. One part on its own does nothing. Hope these comments help.

Hi Scott,

Thanks v.much for that

Yes, I wondered the same as the breathing trouble was not a strange feeling - just more severe and I was/am a bit floored. But then i'm never sure whether I actually believe herxing exists or whether it's just a way of psychologically justifying why symptoms are happening when one feels they shouldn't be
I'm still bad now (though not quite as bad), so it could well have just been going to happen anyway. If it is herxing then it's fair to say it was working on something that was very strongly affecting my eyes, heart and lungs - which is a bit yikes!

I didn't tolerate Avonex very well when I tried it the last time many moons ago and would prefer to try Copaxone again - I know this doesn't do exactly the same thing. Do you think it's only Avonex that helps you or do you feel it might have been the same story on any of the DMDs? I heard Avonex and Rebif help work against viruses but that Copax many not

I certainly haven't felt that that was it. I wanted to try it to see what the response would be - but I always knew 5 days worth wouldn't do much. Until I can get on to the DMDs again I won't push for a long standing dosage. I know I have the option of trying Minocycline as well if I feel that might be better - but to be honest my stomach hates ABX and i'm so convinced my problem is viral. The only thing my brain is saying is.. but if the problem is EBV/GF triggered (strong suspicions) rather than Herpes/CMV will the Valtrex affect EBV at all - do you have any idea on that?

Thanks again, and sorry to bug you with questions! x

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Hi Interrupted,

I'm not a doctor but I do try to understand how things work. As I understand it, Valtrex starts out as Valaciclovir and converts to Aciclovir and Valine when ingested. That turns into Aciclo- GTP which is an inhibitor of viral DNA polymerase. So yes, Valtrex will work on viruses. Minocycline is a tetracycline antibiotic or a bateriostatic antibiotic so it's better for bacterial infections and is often used for acne, dysentry or some STI's where penecillin can't be used. It doesn't sound to me that it will be very effective on viral infections.
Copaxone is a random polymer that mimics myelin basic protein. It may be acting as a decoy to protect the myelin but it also appears to convert pro-inflammatory Th1 cells to regulatory Th2 cells that suppress inflamation. Capoxone doesn't appear to impact on the blood brain barrier.
Avonex is an interferon. It does improve the blood brain barrier and is an anti-inflammatory.
I have no strong opinion on which injection is better as I have just stayed with Avonex despite the discomfort.
I would rather treat an underlying infection with an anti viral than an antibiotic. Some really good pathology work should indentify if you need one or both treatments.
Sorry I can't really help but I am just an interested amateur in this process.
Regards

Thank you, it is most certainly helpful to know that Valtrex may well have broader coverage than the designated Herpes/Shingles and CMV viruses.

So really I need to find out more on how the two DMDs work and figure out whether Copaxone will do what Avonex does in terms of complimenting the drug. Why exactly it is they choose to use Copaxone over the others with the Mino in the trials. Hmm interesting, once again - many thanks x

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Hi Again

In Australia, when I first started to use Avonex it was necessary to mix the powder with the distilled water. They included an explanatory leaflet that said it had (I think from memory) I million units of antiviral activity. I always thought that was odd because the neurologist who prescribed it vehemently didn't believe there was an underlying viral invovement. He exclusively believed it was a genetic issue. Hence I wondered why he gave me something that was antiviral. He called it an immune modulator which I presume meant it calmed down part but not all my immune responses. Now the dose is premixed and there is no leaflet so I don't know if they still claim the antiviral property. I don't know if Capoxone makes a similar claim either. I have always assumed that Avonex is modulating my immune system to help me remylinate faster than I demylinate. I take take the Valtrex to disrupt the reproduction cycle of herpes family viruses. EBV is a herpes family virus. This group need to borrow a host cell to reproduce a new copy and replicate when I make a new cell. By disrupting the virus cycle I hope to make clean new cells and over time lower my viral load. Perhaps just using any injectable as an immune system modulalor will help you remylinate quickly enough and consequently it won't matter what style of injection it is. The trick then would be to lower the viral load so the system thinks there is less need to flare up and the dual approach achieves the outcome I get.
As I said before, I'm not a doctor so the chance is someone will know of a better mix than I use. There is usually more than one way to skin a cat!
It could also be that your viral load is greater than mine was when I started doing this hence you are getting a stronger reaction as the virus reacts to the Valtrex.
It would be nice if everything just moved in a straight line but that's just not the way it happens.
Good luck. Don't give up. At least you're having a go.