Valcyte, Valtrex, and Famvir experiences -- Let's talk

[fdotx]

I tried Famvir for nearly a year, but could not get to a therapeutic dose without my liver enzymes elevating. While they never got dangerously high, they were trending upward, out of the normal range, so I had to discontinue.

My doctor kept me on a low dose Famvir for about a year, with zero improvements. Looking back, I think I actually worsened during that period.

I sought a new doctor, and have now been on Acyclovir for nearly a year, again with zero improvements.

I was positive for active EBV (very high) and HH6 (high) and have been diagnosed ME/CFS by 3 top doctors in the field. Both viral titers improved on AV’s but did not correlate with any improvement in my condition.

San Diego, I came here to see if the 500mg Famvir twice a day was enough and see you got no improvement - nor have I on that or acyclovir. Like you I have very high titers. Interesting when the titers go down but symptoms don't improve. Wonder why that would be? I didn't realize Famvir could raise liver enzymes - had heard that most don't even have them checked on Famvir - good to know! What is a therapeutic dose? Was the 1000mg a day I was taking therapeutic? Thanks.

 

[Remy]

Interesting when the titers go down but symptoms don't improve. Wonder why that would be?

I think it has to be a sign of a dysregulated immune system rather than an overt infection. As others have said, AVs work by several mechanisms, not just by inhibiting viral replication. It may well be one of those other mechanisms is actually more important.

I haven't seen @San Diego around much lately but hope that tagging her will catch her attention!

 

[kamodio]

San Diego, I came here to see if the 500mg Famvir twice a day was enough and see you got no improvement - nor have I on that or acyclovir. Like you I have very high titers. Interesting when the titers go down but symptoms don't improve. Wonder why that would be? I didn't realize Famvir could raise liver enzymes - had heard that most don't even have them checked on Famvir - good to know! What is a therapeutic dose? Was the 1000mg a day I was taking therapeutic? Thanks.

Thanks for your post. I am about to start on Famvir after being on Valcyte with no improvement for a bit more than a year. No change in titers. I'm excited to be starting with a new to me PA at Stanford, Katie, who is studying to become a Functional Medicine practitioner. I didn't know about the possibility of elevated liver enzyme levels either, so I appreciate the heads up. Katie said a difference between Famvir and Valcyte is that Vacyte affects the RNA of virus cells while Famvir affects the DNA. She's also increasing the dosage of LDN as, after a year of it being wonderfully effective, the pain has returned. She said people with both CFS and Fibro often do better with a higher dose, like 5.5 mg. Here's hoping-
I'd love to hear from you all about your anti-viral experiences. Thanks!

 

[garnet10]

Intermittent fatigue since 2002 with post-exertional malaise, worsened gradually over course of 2015; 3 weeks after radiation therapy at end of 2015 I crashed and now diagnosed CFS.

Diagnosed with chronic Lyme in 2016 (positive IgeneX IgM Western Blot) but saw no benefit after 1 1/2 years of antibiotics; now pulsing Ceftin 1 g twice a day; 2 weeks on; 2 weeks off.

Diagnosed with POTS in 2016 and saw some relief with Midodrine. Recently added Adderall XR 20 mg daily to help get through work day.

I started Dr. Lerner's Protocol in mid-March 2017 with Valtrex (valacyvlovir) 1g four times a day.

Mid-May I was feeling very desperate and also started Inosine cycled as per Dr. Cheney' recommendations and Equilibrant based on Dr. Chia's work.

In late May I started Valcyte (valganciclovir) 450 mg twice a day.

I am also on LDN 4.5 mg every evening since January 2017. In the beginning this made me feel almost normal--I felt great and told everyone I had the solution! Had a lot of hives from the LDN at this time as well. Unfortunately, after about a month this effect wore off and I went back to baseline.

None of my viral antibody titers would be considered elevated by Dr. Montoya:

EBV early antigen antibody positive: 66.7 (was 106 two years ago)

Coxsackie B4 positive: 1:640; now 1:80

HHV-6 IgG positive 1:160

Parvovirus B-19 IgG: positive 7.41

I am exposed to these viruses on a regular basis so not even sure the titer amount is significant (could just indicate recent exposure).


In mid-June, I felt something "shift" for the better. I still have to drag myself out of bed to get to work on an abridged schedule, but for 4 days during that week in mid-June I was actually able to work a bit in my yard after work--typically I just come straight home and sit/recline until bed.

I'm not sure what caused that brief positive shift but will update as time goes by.

Thank you for starting this thread. Looking forward to hearing other's experiences.

 

[fdotx]

Hi Garnet - glad to hear you're seeing some improvement. I saw none on Famvir or acyclovir - the viral titer counts do seem to be controversial - mine to EBV is very high but then some folks have high titers and are perfectly healthy. My PCP shrugged them off.... Stanford didn't even take any immune studies - finding out how it's functioning and if not well increasing it to help fight the viruses is the way I'd like to go...

 

[garnet10]

Hi Garnet - glad to hear you're seeing some improvement. I saw none on Famvir or acyclovir - the viral titer counts do seem to be controversial - mine to EBV is very high but then some folks have high titers and are perfectly healthy. My PCP shrugged them off.... Stanford didn't even take any immune studies - finding out how it's functioning and if not well increasing it to help fight the viruses is the way I'd like to go...

Well it was only 4 days. Overall I'm still doing worse than last year--last year I was able to travel by myself to a conference and this year there is no way I'd be able to travel alone or sit through the lectures.

I think I may have partially "adjusted" to my new level of inability. But it's only been 3 1/2 months of Valtrex (the earliest Dr. Lerner said one would see improvement) and 6 weeks of Valcyte (he wrote this would take 4-6 months).

He recommended a minimum treatment of one year, so I'm going to give them both at least a year trial.

I can't really blame your PCP--most doctors are terrified they will be brought before the medical board and lose their license, or go bankrupt defending themselves, etc. if they deviate from standard of medical care.

If this regimen is unsuccessful I'm going to go out on a limb and try anti-retrovirals. I know the positive studies could not be replicated and I'm sure the underlying cause of CFS is multi-factorial and perhaps different for everyone, but as I decline I'll really have nothing to lose.

I found the supplement A.H.C.C. Increased my NK cells (there is very good research supporting this) but I have not had an NK Cell Function test done. I did feel it helped me avoid colds during the winter (this was before I started the ant-virals), but I did not see any improvement in my CFS.

 

[fdotx]

Keep us informed if you see any improvement - I may not have given enough time nor did I try the 2 better known ones although Famvir is what the one researcher uses with Celebrex. I agree with you that this is multi- factorial and will be surprised if a bio marker is found and most of those diagnosed with this are included. What is AHCC?

 

[garnet10]

Keep us informed if you see any improvement - I may not have given enough time nor did I try the 2 better known ones although Famvir is what the one researcher uses with Celebrex. I agree with you that this is multi- factorial and will be surprised if a bio marker is found and most of those diagnosed with this are included. What is AHCC?

http://ahccresearch.com/how-ahcc-works.html

"AHCC stands for Active Hexose Correlated Compound and is an extract obtained from the hybridization of several subspecies of the shiitake mushroom. It is available from a variety of manufacturers in the United States, where it is becoming increasingly popular due its many health benefits.

AHCC is an immune-regulating compound, which means it increases the body’s natural immune response. That means it helps keep you from getting sick and helps fight off the things that cause you to be sick.

The problem with most mushroom supplements is that mushrooms in their natural form are poorly absorbed—their biologically active component (polysaccharides) are too large to slip through the small openings in the stomach and intestine meant to absorb nutrients. Therefore the benefits those supplements can provide are limited, since the body can only absorb a small portion of what is eaten.
The scientists that developed AHCC have solved this problem. AHCC undergoes a unique fermentation process that substantially reduces the molecular weight (and therefore the size) of the polysaccharides in AHCC. Normally, polysaccharides have a weight of 200,000 Daltons; however the polysaccharides in AHCC are reduced to 5,000 Daltons.
With a reduction in size of this key component, AHCC has a powerful immune-stimulating action that ordinary mushrooms and other mushroom supplements do not contain."


It's interesting to note that my daughter also took this supplement during the winter, and felt it helped prevent her from getting sick. We've tried everything over the years, and this is the first time we both felt something worked to help prevent us both from getting sick. Her NK cell number did not increase at all as mine did, but perhaps NK cell activity/function increased--I had no way to measure it.

It is very expensive, and I continue to take it, but I don't feel that it has helped my fatigue. Perhaps over time, if I do have a heavy viral load, and I can decrease that viral load, it will help my immune system to help fight the battle.

 

[fdotx]

Thanks Garnet - I'll try it but as you said it is expensive, especially given that folks taking it for specific conditions should use 3 grams daily.