Valtrex, valacyclovir dose standard?

[Learner1]

Here is info on testing:

https://hhv-6foundation.org/patients/hhv-6-testing-for-patients

 

[gbells]

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 Lehrner 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.

Hip, the fact that the MD isn't following Lehrner's protocols is a giant red flag that they are being sloppy and can't be trusted. I had an integrative MD like this who put me on the wrong drug, Valtrex for ebv instead of valgancyclovir for HHV-6 and EBV pos, when I had HHV6+ and a history of EBV which was at the wrong dose (1g TID valtrex instead of 1.5g QID)! According to the protocols you should see improvement at 3.5 months and need to treat for 1 year. I had no improvement and wasted time and money with that doctor. It isn't fair to patients that they have to have/be their own advocates to catch mistakes of sloppy MDs and I suspect that you see a lot of this with these know it all "jack of all trade" integrative types who never really take the time to learn how to do it properly. Not only that, but disability would have a field day disallowing their testimony as not credible at a hearing. Jeopardizing a claim.

I ended up making an appointment to see an infectious disease MD in the future that I was referred to by a lyme disease group and bringing the Montoya blinded study with me. We'll see if that gets me anywhere.

 

[Hip]

Hip, the fact that the MD isn't following Lehrner's protocols is a giant red flag that they are being sloppy and can't be trusted.

I am not sure if I would go that far. In the case of Valcyte, originally when this was first used to treat ME/CFS, ME/CFS doctors went for high doses (eg 450 mg x 3 daily), but later slightly lower doses (450 mg x 2 daily) were used, with supposedly similar results, but with less side effects and more tolerable for the patient. That's what I heard anyway.

I am not sure if Valcyte also is just as effective at slightly lower doses.

There have not been any studies comparing the effects of dose levels of Valcyte or Valtrex on ME/CFS, though, so it's hard to know for sure.

In fact, there are very few studies period on Valcyte and Valtrex for ME/CFS. There's only really Lerner's studies. Montoya's study on Valcyte only tracked patients for 6 months, which is too short to observe the full benefits of Valcyte, which from Lerner's study we know take 1 to 2 years to manifest.

 

[Learner1]

Lerner is no longer around, unfortinately and the vl8nicians have moved on. I see a top specialist. Another doctor had put me on 2g Valtrex daily for CMV and HHV6, which tbe specialist raised to 3g. My insurance refused to let me have that dose, and I had EBV as well, so the specialist switched me to 2 pills of 450mg. Valcyte 2x daily. I saw 2 infectiois disease specialists who were useless. The integrstive doctors I've seen have been far more helpful.

 

[Thegriz]

Its so crazy to me that there are so little studies done on these antivirals for cfs/me...when it seems antiviral treatment is one of the main protocols of cfs/me specialists.

 

[Learner1]

Its so crazy to me that there are so little studies done on these antivirals for cfs/me...when it seems antiviral treatment is one of the main protocols of cfs/me specialists.

https://www.ncbi.nlm.nih.gov/m/pubmed/17276366/

 

[gbells]

Lerner is no longer around, unfortinately and the vl8nicians have moved on. I see a top specialist. Another doctor had put me on 2g Valtrex daily for CMV and HHV6, which tbe specialist raised to 3g. My insurance refused to let me have that dose, and I had EBV as well, so the specialist switched me to 2 pills of 450mg. Valcyte 2x daily. I saw 2 infectiois disease specialists who were useless. The integrstive doctors I've seen have been far more helpful.

How long have you been on the valcycte and how much improvement in your CFS energy score have you seen (please list initial and current)?

 

[Learner1]

I have been on Valcyte for 18 months - my doctor is keeping me on it for now, but at 900mg daiky. I was at 40% functionality when I went on it and now am at 80-85%. I have done other things too during that time, but did get a discrete benefit from Valcyte.

 

[fredam7]

@Learner1 why did you go on valtrex? I'm curious because I took a large dose for an hsv 1 lip lesion . I think I did that because I felt maybe it might do something for the severe flu like symptoms and well, it did ,

I saw an ent and she was dumber than a box of rocks and said I needed surgery. I came home and took another large dose of valtrex . I don't think I'm imagining that the running mucus is largely improved . I have no idea what's going on .

I also have bad GI problems and they might be a little better but maybe thsts because I cut fructans and fructose because I was told I have fructose malabsorption after the breath test.

Do we have viruses and the valtrex is pushing it back a little ? How can it work that fast ?

I still am disoriented , loud tinnitus , horrifying neck and head pain and nerve pain and very tired etc etc but the mucus part I don't understand. The very dumb and rude ent said I had mucus going down my throat, no kidding Sherlock , but it's the difference between a faucet and just annoying and I only used about 15?tissues today for my nose.

It's possible IVIg kicked in but the valtrex and mucus thing was together . I also quit tirosint for 2 days because I hate it but doubt that has anything to do with it

Sorry I'm incoherent . clearly my brain is still on fire

I

 

[JohnnyMinnesota99]

Hello everybody!

I'd like to ask the following question: Did anyone gain weight while they were taking Valaciclovir? I have taken it for 7 days now (Lerner dose: 4 x 1 gram per day), and I have put on weight even though I haven't eaten more than usual. Could my gain in weight be due to the intake of valaciclovir? Anyone with the same or similar experience?

Best wishes

 

[Tella]

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.

Hey how r u now?

 

[Tella]

H

Hello everybody!

I'd like to ask the following question: Did anyone gain weight while they were taking Valaciclovir? I have taken it for 7 days now (Lerner dose: 4 x 1 gram per day), and I have put on weight even though I haven't eaten more than usual. Could my gain in weight be due to the intake of valaciclovir? Anyone with the same or similar experience?

Best wishes

hey how r u now?

 

[Tella]

Hip, the fact that the MD isn't following Lehrner's protocols is a giant red flag that they are being sloppy and can't be trusted. I had an integrative MD like this who put me on the wrong drug, Valtrex for ebv instead of valgancyclovir for HHV-6 and EBV pos, when I had HHV6+ and a history of EBV which was at the wrong dose (1g TID valtrex instead of 1.5g QID)! According to the protocols you should see improvement at 3.5 months and need to treat for 1 year. I had no improvement and wasted time and money with that doctor. It isn't fair to patients that they have to have/be their own advocates to catch mistakes of sloppy MDs and I suspect that you see a lot of this with these know it all "jack of all trade" integrative types who never really take the time to learn how to do it properly. Not only that, but disability would have a field day disallowing their testimony as not credible at a hearing. Jeopardizing a claim.

I ended up making an appointment to see an infectious disease MD in the future that I was referred to by a lyme disease group and bringing the Montoya blinded study with me. We'll see if that gets me anywhere.

Hey how r u now?

 

[Tella]

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?

Hey how r u now?

 

[Hd-x]

Hey how r u now?

This may answer it: https://weightxreps.net/journal/Hdx/2019-12-24
I am not fully cured and cant train anymore like healthy guys, but able to do "something" without crashing that hard. (as so long I dont go too far over my limits). Nevertheless, there are some neurological and unsolved immunological problems left (Th2 Shift, low Cd8, high IL4, IL8, TNF-y, TGF-ß, IGG2).

 

[aturtles]

I find that 1g of valacyclovir noticeably and reliably reduces sudden (<1 day) fatigue symptoms, which I attribute to efficacy in reducing EBV recurrence. I'm just today doing that very reversal, and--for me--the effects are fast and marked. (Like 30 minutes to felt improvement in energy.)

After reviewing my research, and reading these posts, I'm raising to 3g, across the day, for my "sudden fatigue protocol". (I do other things as well, including lomatium and increased copper, but YMMVW, of course.)

I do not, currently, use valacylovir at all when I'm not in fatigue. But my general trend across the last five years has been toward almost no fatigue (1 or 2 days in 30) so I don't take things unless I need to.

 

[Tella]

This may answer it: https://weightxreps.net/journal/Hdx/2019-12-24
I am not fully cured and cant train anymore like healthy guys, but able to do "something" without crashing that hard. (as so long I dont go too far over my limits). Nevertheless, there are some neurological and unsolved immunological problems left (Th2 Shift, low Cd8, high IL4, IL8, TNF-y, TGF-ß, IGG2).

Great. How’d your fatigue improve? Pem? Happy u are better

 

[Tella]

I find that 1g of valacyclovir noticeably and reliably reduces sudden (<1 day) fatigue symptoms, which I attribute to efficacy in reducing EBV recurrence. I'm just today doing that very reversal, and--for me--the effects are fast and marked. (Like 30 minutes to felt improvement in energy.)

After reviewing my research, and reading these posts, I'm raising to 3g, across the day, for my "sudden fatigue protocol". (I do other things as well, including lomatium and increased copper, but YMMVW, of course.)

I do not, currently, use valacylovir at all when I'm not in fatigue. But my general trend across the last five years has been toward almost no fatigue (1 or 2 days in 30) so I don't take things unless I need to.

How bad were u before? Do u have any other infection on top like cmv?

 

[Hd-x]

Great. How’d your fatigue improve? Pem? Happy u are better

2015 bedridden
2016 most off the time bedridden, if I tried to train just for 5Minutes, I crashed very hard with PEM (up to 2weeks)
2019 able to leave the house, I can go out for shopping without that it steals all my energy like years ago.
I am meanwhile able to train 2x times a week up to 20minutes, if I crash nowadays with PEM it usually dont last that long (1-2days) and didnt hit me that hard like in past.

I think, that I could perhaps sometimes be able to return to work --> if I would get access to a good doctor, who knows ME/CFS and MCAS.
- the problem is still to find such a doctor, who is willing to prescribe offlabel drugs for both diseases.

 

[Tella]

2015 bedridden
2016 most off the time bedridden, if I tried to train just for 5Minutes, I crashed very hard with PEM (up to 2weeks)
2019 able to leave the house, I can go out for shopping without that it steals all my energy like years ago.
I am meanwhile able to train 2x times a week up to 20minutes, if I crash nowadays with PEM it usually dont last that long (1-2days) and didnt hit me that hard like in past.

I think, that I could perhaps sometimes be able to return to work --> if I would get access to a good doctor, who knows ME/CFS and MCAS.
- the problem is still to find such a doctor, who is willing to prescribe offlabel drugs for both diseases.

Thanks. So happy for u! So it did take a few years but u improved. Gives me hope. I’m bedbound. How long were u sick before starting? Did u ever change/add meds n how long r u planning to take them for? Did u have a bad reaction or side effects when first stated? Sorry for many questions... in the midst of starting to take the pills myself