Valtrex and EBV

[mikipe2]

Hi All,

My name's Mike, 26, and I've had CFS for 8 years, and am now about 50% on Dr David Bell's Disability Scale (on my good weeks at least, and from a 10 originally).

I've only recently discovered that people with CFS can potentially be treated with anti-virals, and I have gotten some great hope from Dr Lerner's study with EBV subset using Valtrex.

My only known co-infection is EBV, so it seems that I might be a good candidate for Valtrex.

Has anyone here had any personal experience with Valtrex in terms of success rate and/or side-effects?
Is it considered to be one of the most successful anti-virals (at least for EBV subset), as Dr Lerner's study suggests?
Is this study and/or Lerner considered to be reputable?

Any responses would be appreciated.

Thank you!
Mike.

 

[Tony]

Hi Mike,

I'm pretty sure there are some patients of Dr Lerner on this board. And I'm sure as a doctor he is taken seriously by the medico's who understand and treat ME/CFS. He was also an author of the Canadian clinical guidelines for ME/CFS, so he's in good company there.
I'm sure others will chip in with some more specific info for you as I can't answer your other questions.

Cheers
Tony

 

[KC22]

Hi Mike...

I am a patient of Dr. Lerner's and have had experience with valtrex. I am still taking it along with valcyte and doxycyline.

By far, the valtrex is the easiest to take. I didn't have a lot of problems with it and still don't.

As far as success, I have improved, but still working on it. I have a multiple of infections, so it is harder to treat.

Dr. Lerner does have success with his patients. I met a woman in her earlly 30's when I first started. She only had EBV, too. She was buzzing around the office and telling me she has been better for about 7 years. She still sees Dr. Lerner for follow-up and still is on a small dose of valtrex.

I don't know how old you are, but it does appear, the younger, the better. That is my opinion from what I have seen.

Also, you could go to his website: cfsviraltreatment.com. There are a lot of good testimonials there.

 

[Patient 2]

Hi Mike,

I am not a patient of Dr.Lerner, but I was on Valtrex 4 g/day for about year and a half with no success (i stopped about a month ago). I also have chronic EBV, tested negative for other viruses. I didn't have much side effects from it, but my digestion got screwed up. Not sure if it was from that or from something else. You can always try vatrex and see how you do.

 

[mikipe2]

Wow, talk about quick responses!

Thank you!

I've had a quick look at cfsviraltreatment.com before, but you never know whether patient testimonials are actually real or not, however they do seem fairly genuine with realistic, not outrageous claims.

Thank you again for everyone's resposes.
If anyone else has/hasn't had success with Valtrex and/or Dr Lerner, I'd love to hear.

Mike.

 

[heapsreal]

hi

I am on famvir and had an initial good 6-9 months but have had a few crashes. Have had a few short periods of avs but get worse, feel much better on them. Was on for 12 months straight, but since having a few short breaks from avs it seems to work better. My lymphocytes slowly dropped while on famvir from their high level.

cheers! good luck.
ps, have a friend who has recently started famvir and is feeling better also. But it can take a good 3 months to notice anything

 

[hvs]

Yes, my spouse's CFS went into remission after one brief course of valtrex (and gamma globulin shots, but the improvement came after the valtrex and before the gamma globulin shots).

 

[maryb]

HI there
I was recently prescribed Valtrex for a couple of weeks by a private doctor in the UK after blood tests showed an active EBV. You probably know that people with this illness are denied anti-virals in the UK by the NHS. I digress however!
After taking only two tablets (500mg) some of my symptoms disappeared particularly the burning sensation I get all over my legs -and the awful painful boring feeling at the back of my head/top of my neck area. I had few side effects but could only tolerate 2000mg a day, felt overall a little better, this maintained after the course was finished.
I intend to buy some of the generic product in a couple of weeks. I am having the XMRV test soon and have to have been off the Valtrex for at least 15 days. I saw enough of an improvement to give it a go myself but need to check on the side efects and to be clear exactly what I am doing. Its a bit scary when you go it alone, I am so envious of the help some of you get from your doctors.

 

[gracenote]

off Valtrex before XMRV test

. . . I am having the XMRV test soon and have to have been off the Valtrex for at least 15 days. . . . Its a bit scary when you go it alone, I am so envious of the help some of you get from your doctors.

Welcome maryb. I noticed this is your first post. I think you may feel a little less alone by joining this forum and I hope you will benefit from the help everyone here is so happy (and eager) to offer. But I agree, it can be a bit scary not to have a doctor who can follow through with you.

I'm wondering where you heard that you need to be off Valtrex for at least 15 days before an XMRV test. I don't think I've run across that yet. It would be good to know.

Thanks,

Gracenote

 

[alice1]

Welcome to the board maryb.It's great to hear you've improved.
I know too well about not having a doctor to help.I went to see an ID doc who wouldn't even do some testing that I asked for and he kept telling me that Valtrex and other antivirals would make me very ill and was that worth it....WTF!
If anyone in Canada know's a doc who is treating with antivirals I would really like their name.Thanks.
maryb good luck with going it alone.

 

[maryb]

I'm wondering where you heard that you need to be off Valtrex for at least 15 days before an XMRV test. I don't think I've run across that yet. It would be good to know.

Thanks,

Gracenote[/QUOTE]

Thank you for your welcomes.
In reply, I e-mailed Vipdx who replied that I needed to be off any anti-viral drug for at least 15 days before having the blood test

 

[mikipe2]

HI there
I was recently prescribed Valtrex for a couple of weeks by a private doctor in the UK after blood tests showed an active EBV. You probably know that people with this illness are denied anti-virals in the UK by the NHS. I digress however!
After taking only two tablets (500mg) some of my symptoms disappeared particularly the burning sensation I get all over my legs -and the awful painful boring feeling at the back of my head/top of my neck area. I had few side effects but could only tolerate 2000mg a day, felt overall a little better, this maintained after the course was finished.
I intend to buy some of the generic product in a couple of weeks. I am having the XMRV test soon and have to have been off the Valtrex for at least 15 days. I saw enough of an improvement to give it a go myself but need to check on the side efects and to be clear exactly what I am doing. Its a bit scary when you go it alone, I am so envious of the help some of you get from your doctors.

Hi maryp,

I'm in Australia, and need to go it alone. I have a doctor who is considered to be a CFS specialist, but doesn't seem to believe that there's any active virus(es) and doesn't recommend me taking anti-virals (although thankfully he's happy to prescribe them to me).

So I'm kind of going it alone too, hence why I started this post.

And thanks for letting us know about that 15 days thing. I didn't know that, although it'll probably be a long time before I get tested for XMRV (once it's available in Australia).

Cheers
Mike.

 

[sleepwalking]

I've been taking Valtrex for about a year now. I was really suffering from genital Herpes outbreaks on top of all my other problems. I had tried some of the other common antivirals like Acyclovir,Zovirax ointment, and Famvir but they didn't help at all.

After being on it all this time I had forgotten about all the other things it helped. I was scheduled to get my XMRV test last Monday and the previous week had heard the rumor that you have to be off antivirals for 15 days before you take the test. Still don't know if that is true or not. VIP dx isn't handing out that information. But at any rate I stopped taking it immediately (3 days before the test).

I went to get my monthly refill and it suddenly seems that the $30 copay thru Medicare no longer exits as I was charged $175.89 for 30 pills. WTF? There is no way I'm going to be able to afford it now. So I just continued to not take it to see what would happen. As of Saturday (9 days off) my whole body was thrumming like a guitar string especially in the pelvic region. I felt nauseous, was sweating and running the low grade fever again. I had horrible IBS for days (worse than usual) and was also suffering from anxiety and insomnia again. And my ears started ringing which I haven't had a problem with in a while.

I went back on the Valtrex yesterday morning and am already improved although still thrumming. Now I don't know what to do since I can't afford the Valtrex.

Is Valacyclovir the generic of Valtrex? Does anyone have any experience with it?

Hugs,
SW

 

[cfs since 1998]

Is Valacyclovir the generic of Valtrex? Does anyone have any experience with it?

Yes, the generic name of Valtrex is valacyclovir. The patent JUST expired 6 months ago. If you can't get a generic at your local pharmacy you should be able to get it through an online Canadian pharmacy.

You may want to seriously consider olive leaf extract (but don't use a generic brand). I think it is a very good antiviral, I have been taking it for almost a year. When I first started it, I herxed just like the CFS patients herx on Valtrex/Valcyte, and the herx lasted several months. I didn't really improve that much but ran out a few days ago and worsened significantly, got a massive headache and inflamed brain feeling. I can't wait to get back on it.

 

[jmolina]

Hi everyone, I have been on 3 grams for Valtrex for 4 years now. I have no side effects. I have tried three times to decrease the amount, hoping that my body can keep the EBV suppressed. Every time within 10-13 days I come down with the full symptoms of EBV. Before I went on the Valtrex I was housebound and had to use a scooter to get around outside the house. I couldn't drive due to muscle fatigue and brain fog. On Valtrex I can drive again, I haven't used the scooter in three years, we even took the lift out of the van. I can do stuff around the house if I pace. I can go for a walk at least twice a week if it isn't too long. I still clearly have limitations and many more migraines, but I sort of have a life back. My primary care physician has recommended Valtrex to at least on other of her patients due to my response. I'm not one of Dr Lerner's patients, but read his study and convinced my physician to try it.

 

[Robin]

Hi everyone, I have been on 3 grams for Valtrex for 4 years now. I have no side effects.

JMolina, I'm very happy that you are feeling better and more functional! (And, welcome to the forums!)

How long after beginning treatment before you saw an improvement. Was it immediate or gradual?

 

[hvs]

I wonder how antivirals fix our somatization disorder??
; )

 

[jmolina]

Hi Robin, I stopped getting sick all the time and fatigue improved some right away, but I was so weak from many years of not being able to do much of anything that it took a while for me to really see improvement. By a while I mean about a year or so. I was getting stronger all that time but I didn’t trust it. It wasn’t until I realized that I could do without the wheelchair more and more that I began to trust that I could get stronger and stay stronger

 

[Cort]

Janets story of her experiences with Valtrex are on the Front Page section of the Forums

http://forums.phoenix-cfs.org/content.php?24-Breathing-Deep-with-Valtrex-A-Patient-Improves

 

[Robin]

Hi Robin, I stopped getting sick all the time and fatigue improved some right away, but I was so weak from many years of not being able to do much of anything that it took a while for me to really see improvement. By a while I mean about a year or so. I was getting stronger all that time but I didn’t trust it. It wasn’t until I realized that I could do without the wheelchair more and more that I began to trust that I could get stronger and stay stronger

Thanks for sharing! I'm thinking about anti-virals and have been reading other people's stories. You've had a good outcome. I'm glad you're feeling better and hope you continue to improve!