Valtrex and EBV

[sleepwalking]

I had my blood drawn for the XMRV test on Jan 11 and was taking Valtrex at the time.

This is the response I received from VIPdx in regards to my questioning them about this;

From Marguerite Ross, Director


Let’s wait for your results; it may not have interfered. Discontinuance of medications should be discussed with your physician. Anti-retroviral medications would definitely interfere because XMRV is a retrovirus. Valtrex is not an anti-retroviral medication. If your tests are negative and you want to be retested, we could do so in 3 months. Our serology test will be available sometime in late spring as well. I would not make a decision until your results have been finalized.

 

[Julia Rachel]

Hi Mikepe2:
My Specialist indicated that there has been no proven scientific data showing that Valtrex lowers EBV Titers. In fact, he said it does not. He is treating my son and me with Valcyte (900 mg) once daily for 18 months or longer, then phase 2 of treatment begins. I have HHv-6A,EBV,CMV and Micoplasma and XMRV. I just received an article today from this site which indicated that someone DID HAVE POSITIVE results with Valtrex, but I don't know titer numbers, length of time taken, percentage of improvement, etc......it sounded positive to me......Blessings, Julia......

 

[markjoetay]

Hey everyone, I have ordered generic Valtrex tablets from emedoutlet.com at $99. any one here who have ordered from this pharmacy. I want to know when I will receive my discount code from this pharmacy for my next order.

Thanks

 

[anne]

I had great improvement with Valtrex--as in from 20% to 100, where I was for four years. I can't tell you what the titers were, except I went from positive to negative. That said, I only had EBV, not any of the others.

Oh, and I think it was a six week course, or maybe 2 months....

 

[Jenny]

I've got 18 450mg Valcyte tablets - they were left over after my husband was taking them after his liver transplant.

They'll be out of date soon - is there any point in taking them to see what happens?! At 900mg a day they'd last 9 days. It's impossible to get in the UK.

I expect the answer is no!

Jenny

 

[cfs since 1998]

is there any point in taking them to see what happens?! At 900mg a day they'd last 9 days. It's impossible to get in the UK.

Nine days isn't much. In the Montoya paper, it seems it took two weeks just for the patients to start "herxing".

 

[Wayne]

Leftover Valcyte

I've got 18 450mg Valcyte tablets - they were left over after my husband was taking them after his liver transplant.

They'll be out of date soon - is there any point in taking them to see what happens?! At 900mg a day they'd last 9 days. It's impossible to get in the UK.

I expect the answer is no!

Jenny

Hi Jenny,

I probably wouldn't worry too much about the out of date thing. I also would recommend you do a trial with it while you've got it just to see what it might do for you. It seems Janet noticed some improvement right away, and you might just have the same experience. I'm not sure why you would want to take 900 mg; why not try a 450 mg tablet, or even half a tablet of 225 mg.?

Smaller does would last longer, perhaps give you a better idea whether it is working or not, and also perhaps avoid any unpleasant side effects from taking more than your body can comfortably handle. I'm of the belief these medications should be taken cautiously, as so many of us are overly reactive to some prescription medications.

I recently posted about an experiment I did with the anti-viral Acyclovir. I found that just a small amount (total of 4 capsules) over a several week period gave me some good results. I think it's possible there are others like me who may be able to get some benefit from anti-virals without having to take them regularly. Since you have a small amount of Valtrex, I think it would be worth a try.

All the Best, Wayne

 

[Wayne]

Reovery from Valtrex

I had great improvement with Valtrex--as in from 20% to 100, where I was for four years. I can't tell you what the titers were, except I went from positive to negative. That said, I only had EBV, not any of the others.

Oh, and I think it was a six week course, or maybe 2 months....

How cow Anne! That's pretty remarkable. Congratulations on your recovery! :victory:

It seems that if you were able to have an experience like this, wouldn't it make sense that at least a small percentage of others might have a similar one? Thanks for sharing.

Wayne

 

[Wayne]

Valtrex for Somatization Disorder ?

I wonder how antivirals fix our somatization disorder?

Hey HVS, a very good question!!! :Retro smile::Retro wink:

 

[Wayne]

Valtrex - Remission

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).

Hey again HVS, great testimonial regarding your spouse. And congratulations. Who'd thunk Valtrex could fix a somatization disorder? er, I mean, CFS.

 

[Wayne]

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.

Hi Maryb, thanks for your testimonial. It really jumps out for me when I hear of people getting pretty dramatic results after taking just a small amount.

I had a similar experience with Acyclovir. I think experiences like ours could encourage others to do their own experimentation without necessarily having to wait weeks or months or prolonged agony to determine whether it might work for them or not.

Best, Wayne

ETA When you mention 2000mg, did you mean 200 mg.?

 

[Wayne]

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

Thanks for posting this link Cort. I found Janet's extended story quite interesting. Also discovered she's a fellow Oregonian. :Retro wink:

I notice Judy on this link posted another link to a website where a person can get Valtrex without a prescription. OverseasRXDrugs.com

This might be an option for those who don't have access to it through their own health care provider or system. It might also be less expensive than what some currently have to pay.

Wayne
http://www.overseasrxdrugs.com/?drgn=1

 

[Anika]

Generic Valacyclovir vs Brand Name Valtrex - any experience

Has anyone had any experience with changing over to the generic form of valacyclover from Valtrex? Experiences positive or negative?

I've tolerated Valtrex well for over a year. After a bit, some improvement in symptoms - but I was also doing other things to address infections during this time.

My new pharmacy coverage is advising me about the availability of the generic form, valacyclovir- this is fairly new - and my copay would be less, as well as total insurance cost.

I like to use generics when possible, but I've noticed that some people don't respond as well to the generics, and sometimes go through a hard time to get the non-generic covered by insurance. I'm inclined to try this after talking with my doctor (probably in a couple of months) - but I would appreciate knowing if anyone has switched and noticed any difference.

Thanks
Anika

 

[Jenny]

Thanks for your comments on my post about trying the 18 Valcyte tabs, everyone. I hear that some have had improvement almost immediately after starting Valtrex, but would this also apply to Valcyte do you think?

Jenny