Valtrex, valacyclovir dose standard?

[Thegriz]

Currently I am trying the antiviral approach using valtrex or valacyclovir.
Cfs/me specialist has me on 2 grams a day.
Doing some research there doesn't seem to be a standard dose given by doctors.

The only study I have found is Dr. Martin Learners using 4 grams per day.

Is anyone else using antivirals? How much per day? Has it helped?

 

[Hip]

I am not aware of any published info (studies or presentations) by doctors other than Dr Lerner's concerning Valtrex dosing. A summary of Lerner's studies given in this post.

I believe Lerner only used Valtrex when EBV was the only active viral infection (as indicated by high antibody titers). If there was CMV or HHV-6 involved, then he used Valcyte. That's because Valtrex does not work for CMV or HHV-6, whereas Valcyte works for all three of these herpesviruses.

Don't want to put you off trying Valcyte, but I don't remember coming across any report on this forum of major benefits arising from Valtrex in the treatment of EBV-associated ME/CFS. (Though if you come across any Valtrex success stories on this forum, please let me know). In Lerner's study, Valtrex appeared to work well; so it is strange that I've not come across any Valtrex success stories

Whereas I've seen quite a few Valcyte success stories (listed in this post). By success, I mean the patient moves up by at least one level on the ME/CFS scale of: very severe, severe, moderate, mild, remission as a result of Valcyte.

 

[toyfoof]

I am on 1-2 grams of Valtrex, depending on symptoms. For awhile, I was on 4 grams per day. My EBV titers have gone down in the 16 months I've been on Valtrex (I don't remember the numbers, but it's significant enough to keep me on the Valtrex).

My primary alert that I have overdone things and PEM is coming is a sore throat and other flu-like symptoms, and so on days where I feel this I take 2 grams of Valtrex. If I've had a few days without the symptoms, I go back down to 1.

Interesting, though, about the Valcyte/HHV-6. I do have HHV-6 in addition to EBV, and I'm getting new insurance in May that covers Valcyte but needs a prior auth for Valtrex, so maybe I'll ask about switching.

 

[Thegriz]

My EBV titers have gone down in the 16 months

Did you notice a decrease in cfs symptoms with that?

I have not been tested for hhv6 but im negative for cmv and postive for ebv and vzv.

 

[toyfoof]

Did you notice a decrease in cfs symptoms with that?

It's hard to say, because every day is different, but overall I'd say no. I was working when I started on the Valtrex (and had higher EBV titers) and now I'm too sick for work. But my main issues are not EBV symptoms (unless I'm hitting PEM). So possibly my EBV symptoms have improved, but the ME/CFS disease has progressed. EBV was likely my trigger/cause and it's probably worth keeping it in check (especially since I don't experience side effects from the Valtrex) but I don't think it's my main issue anymore.

 

[Seven7]

what I understood. Famciclovir has to be twice a day because it does not last longer than 12h. For Valtrex one big dose again was ok. So depends on the antiviral.

 

[Hip]

I have not been tested for hhv6 but im negative for cmv and postive for ebv and vzv.

Did an ME/CFS specialist doctor diagnose you as positive for EBV and VZV? Because they use a different concept of positive, compared to regular doctors.

 

[Thegriz]

Yes,
ebv igg 106
Vzv igg 3000

I was reading your roadmap, which has been so much help thanks!
And I am thinking about testing for
cvb, ev, parovirus, and hhv6

 

[Hip]

@Thegriz, you might find this poll of interest; it asks ME/CFS patients how much they improved on various standard treatments including Valtrex, Valcyte, oxymatrine and others.

I found it very interesting that 50% of patients trying Valcyte achieved what I defined in that poll as a "major" improvement. By contrast, only 13% of patients trying Valtrex (or the very similar drug Famvir) achieved a major improvement.

So from that poll at least, Valcyte looks considerably more effective than Valtrex.


In that poll, a "major" improvement I defined as moving up at least one level on the ME/CFS scale of very severe, severe, moderate, mild, remission.

I've been working on a better poll (to be hosted offsite), that covers more ME/CFS treatments, and has a better set of possible answer responses.

 

[Thegriz]

Thats great thanks for the info. I would be all for trying valcyte, with knowing this info. However I dont think my cfs specialist will want to do this at least right away. He is taking the slow and steady approach (which im not too fond of). He says he only uses valcyte for cmv, and didnt test for hhv6. Not sure if i can persuade him without good reasoning.

 

[Pyrrhus]

what I understood. Famciclovir has to be twice a day because it does not last longer than 12h. For Valtrex one big dose again was ok.

Actually, the active ingredient in Valtrex has a blood half-life of only about 3 hours. So it is best to break up your Valtrex doses and take them throughout the day, with a small portion every 4-6 hours or so. (The intracellular half-life may be longer, though.)

 

[Hd-x]

1000mg Valtrex + high dose L Lysin (inhibits HSV virus copy, too) helped me to some degree. (less fatigue, less muscle pain) After several weeks I switched to low dose Valtrex 2x250mg (morning/night) + 1x 2000mg L Lysin (at lunchtime), doing so hasnt worsen things for me.
Additionaly I am taking few other things like Selen, copper, Mucosolvan (Ambroxol Syrup, the stuff did have some mild antiviral effects, too), obviously the combination maked the difference.

 

[Hip]

@Hd-x, I've never found any evidence that lysine has antiviral effects against EBV or other herpesviruses, except for HSV. And even for HSV, lysine only works if doses are higher than 1 gram (see here).


One supplement that may have potent anti-EBV effects is andrographolide from Andrographis paniculata. In some pharmacokinetic calculations I did (which I have not yet posted on the forum), andrographolide looks like it might work pretty well for EBV.

Though as with most herpesvirus antivirals used in ME/CFS, it will likely take 3 or 4 months for the benefits to first begin to appear, and a year or two for the full benefits to manifest. This what Dr Lerner found: herpesvirus antivirals take a long time to work in ME/CFS.


The only exception seems to be ME/CFS linked to VZV reactivation: Dr Chia finds that just a few weeks of a simple antiviral like acyclovir can make profound improvements in such ME/CFS patients.

 

[Hd-x]

I was taking (bevor I switched to Valtrex + L Lysin) few other things like artemesia and so on.
http://www.drmyhill.co.uk/wiki/Chronic_infections_in_CFS
(I guess, you allready know this)
The artemesia stuff helped somewhat, too - but I was getting (too much) unwanted (Herx) side effects with the time and switched over to Valtrex/LLysin/Ambroxol regime.

About L-Lysin:
My starting/initial L-Lyse dose was higher (6000mg), I still reduced Valtrex + L Lysin after a while and fatigue/muscle pain hasnt worsen so far. My HSV1 blood levels were high in past, the outbreak was really worst on the lipps & even on the skin - it hasn´t come back till today.
There are few theories around like the Pridgen HSV1 Fm-Link.
(as far as I remember, he treated FM sufferers with antivirals (famvir?) + Cox2 inhibitor (Celebrex).

 

[Learner1]

However I dont think my cfs specialist will want to do this at least right away. He is taking the slow and steady approach (which im not too fond of). He says he only uses valcyte for cmv, and didnt test for hhv6. Not sure if i can persuade him without good reasoning.

My ME/CFS specialist tests for all herpes viruses, and when he found I had HHV6, EBV and CMV, he immediately prescribed 1.8g Valcyte daily. My brain fog cleared within 30 days of being on Valcyte and fatigue has gradually improved.

Perhaps you can tell your CFS specialist this is what his/her colleagues are doing...

 

[heapsreal]

Actually, the active ingredient in Valtrex has a blood half-life of only about 3 hours. So it is best to break up your Valtrex doses and take them throughout the day, with a small portion every 4-6 hours or so. (The intracellular half-life may be longer, though.)

Famvir is said to have an 18hr intracellular half life. Its possible it can be effective against cmv and hhv6 as past posts have shown some have lowered their viral titres on famvir or after valcyte use, cfsers have been able to keep viral titres down with famvir.

 

[Hd-x]

he immediately prescribed 1.8g Valcyte daily. My brain fog cleared within 30 days of being on Valcyte and fatigue has gradually improved.

I am since Januar on Valtrex, the first thing I noticed was a little bit more energy - things continue to improve gradually within 6weeks.
My NK cell count also increased, but I am not sure if it has something to do with antivirals or any other cirumstandings like higher Selene, copper dosing, my increased mobility rate or so.
Cd8+Cd31 cells remained somewhat low, whereas IFN-g, IL 4, IL 8, G.2 a little bit high.
Obivisouly this may have other and not any viral related reasons.

 

[Diwi9]

FWIW - Famciclovir, 1g, 3x's per day.

 

[Thegriz]

ME/CFS specialist tests for all herpes viruses, and when he found I had HHV6,

If i wanted to be tested for hhv6 is there a different test for hhv6a and hhv6b?

 

[Hip]

If i wanted to be tested for hhv6 is there a different test for hhv6a and hhv6b?

These are now considered to be different viruses, but I believe most lab tests are not able to distinguish between the two. I don't think it matters too much though, because in either case the treatment is still the same (usually Valcyte).