Long term Valtrex users curious

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I just started Valtrex 1000 mg/day. My EBV and HHV6 IGG/IGM levels are elevated. I know from Dr Lerner's work that people stay on it many years.
I'm curious about how it's going for long term users?

Did side effects abate when improvement kicked in?
Did you get a good result in your first year?
Did you improve more in later years?
How much remission or improvement have you gotten?
Are relapses less severe?
Do you still get PEM/PENE?
Are you doing just Valtrex or Valcyte too?
Anything you'd like to add?
 
Last edited:

sharks

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I've been on both valtrex and famvir long term dealing with 2 different strans of the herpes virus.

I was on valtrex for 3 months which I believe was better for HSV1/2 for me. Famvir for 4 months was better for CMV and EBV.

For valtrex the only side effect I had was that I was dizzy and I would loose my balance sometimes.

Valtrex helped suppress my breakouts for 4 years. When I did get one it wasn't as intense as they previously were. I don't think it did much for my EBV because that came back hard with me.

On famvir the first 2 weeks I was on it, I couldn't leave my bed. The pain and fatigue were awlful. And every single Herpes family virus came out. I got a few chicken pox break outs and a low scale HSV2 break out. Which stunned my dr because famvir treats the whole spectrum of viruses in that family.

After 4 weeks on 1000 per day, I was feeling significantly better and I could leave my house and start doing things. I am still not 100%, but famvir did improve aloT of my symptoms. My only issue is that I couldn't sleep on it and it raised my heart rate slightly.

I know a lot of people on this form would suggest famvir over valtrex. I think it's whatever works for you.
 
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Hi Sharks,
So that's not that long compared to the years I was imagining. That's great that the Famvir was so helpful. Did anything help the EBV? Can I ask how long you've been off it and how you're maintaining?
 

Wonkmonk

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If you have EBV and HHV6 Co-infection, according to Dr Lerner, you need Valtrex plus Valcyte. Note that everyone has HHV6, so you only need Valcyte if HHV6 titers are elevated. If you are going after EBV only, Valtrex is sufficient. Also note you should test for bacterial co-infections and treat them first if needed. Dr Lerner recommends minimum Valtrex/Valcyte treatement for one year. Improvements start no earlier than 4-6 months.

All is detailed here, if you haven't already seen it:

http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

I have EBV only, HHV6 titer is IgG 1:32 and IgM negative, and no bacterial co-infections so according to Dr Lerner's protocol, Valtrex only is sufficient for me. As recommended for patients >80 kg, I took 1,500mg four times a day.

I took it for 5 months, after which my kidney function started to deteriorate, so I had to stop it for the last 2 months. In that time I switched to Famvir and Brivudine, the latter doesn't affect the kidney at all. I now try to go back to Valtrex (actually I'm using a German generic).

I had some significant improvement in the 5 months in which I took it. Especially my joint pain in the hip region almost disappeared entirely, PEM improved, my heart seems to benefit. That's why I want to go back to it as soon as possible. Brivudine and Famvir also appeared to be effective, but for Valtrex, there is the most scientific evidence, so I want to go back to it if I can.

Regarding your questions:


Did side effects abate when improvement kicked in?

I didn't have a lot of side effects in the first 3 months. Note that Dr Lerner mentions that a worsening of symptoms (Herxheimer reaction) can occur in the first 2-4 weeks, this is not a toxicity. Instead it indicates good response.

After 4 months, I started to have side effects, because my kidney function was affected. They disappeared after stopping it for 2 weeks, but improvements also disappeared.

So in my case, there is no simple yes or no. It's complicated ;)

Did you get a good result in your first year?

I got pretty good results for some symptoms in the first 5 months. Other symptoms like fatigue, energy didn't improve much. But most improvement is expected to occur after 6 months, so I hope that happens when I can continue Valtrex.

Did you improve more in later years?

Can't comment.

How much remission or improvement have you gotten?

Joint pain in the hip almost disappeared completely (I had a hard time even walking a few steps before), PEM improved, heartbeat was more regular, palpitations improved.

Are relapses less severe?

When I stopped Valtrex after 5 months, I had the feeling that most symptoms start to return after 1-2 weesk, but less severe. Though they may get more severe when I don't take it for a longer time.

Do you still get PEM/PENE?

I'm not familiar with PENE, but I have much less PEM!

Are you doing just Valtrex or Valcyte too?

Just Valtrex.

Anything you'd like to add?

What I think caused the kidney problems after 3 months was that I started Vitamin D and calcium supplements. I would advise anyone, if there is no medical reason, to take only moderate calcium, Vitamin D and phosphate including in the diet.

Hope it helps you a bit :)
 
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Been on Valtrex for over 2 years now (currently 2g, have been up to 6g). It does help prevent outbreaks which are part of my cluster of immune symptoms. The outbreaks are on my lips and nose only, and usually don't fully erupt.

But beyond that, I can't say Valtrex does much. No major change to PEM/PENE. No obvious overall improvement. Then again, no noticeable side effects (even at 6g, only the mildest nausea).

When I have tried reducing my Valtrex dose in the past, the herpes outbreaks return. I will likely be reducing my Valtrex dose to 1g in a few months and see how it goes.

I would like to try other antivirals (Valcyte, Famvir), but they are not covered by insurance.

Edit: It was the Open Medicine Institute which had me increase my Valtrex to 6g, then taper it to 1g. I haven't dropped to 1g yet because when I do, herpes symptoms reappear.
 
Last edited:

Wonkmonk

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Perhaps, @Cyndia, it would be good to know if you are taking Valtrex to suppress actual herpes virus outbreaks (e.g., cold sores) or if you want to treat the Chronic Fatigue Syndrome.

In my case, I don't have any problems with cold sores at all. I hadn't had any for at least 4 years (before Valtrex). I am taking it to treat Chronic Fatigue Syndrome and all its various symptoms.

For treating CFS, according to Dr Lerners research, you need high doses in order to reach the IC50 concentration at least 85% of the day. He writes that this is usually 4000-6000mg a day. In order to suppress herpes virus outbreaks, you can work much lower doses, I think in the patient information, they say 500mg two times a day.

So depending on your goal, that's of course a big difference.
 

sharks

Senior Member
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Hi Sharks,
So that's not that long compared to the years I was imagining. That's great that the Famvir was so helpful. Did anything help the EBV? Can I ask how long you've been off it and how you're maintaining?
I think it depends on how bad you have it. I had CFS for close to 10 years and I took that. Did some light exercise when I could, did vitamins and took whatever I could to sleep. Which is the key sleep will help you heal while on medication.

I have been off for two weeks and my dr has put me back on doxy because I still have Lyme symptoms and I got a questionable rash to be safe he switched me back. But I feel like the foggyness and rundown feeling of cfs has diminished. Now I feel tired differently, have a hard time sleeping and hormonal issues.

I asked my dr about valcyte and he said that it was extreme for me and the risks were not worth it when all of my other blood work came back normal. I also didn't have a compromised immune system.

People that are on it for years must have it really bad. But I only needed to do 1500 mg for a day for a month to start feeling better. Then I went down to 500 a day to maintain.
 
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Perhaps, @Cyndia, it would be good to know if you are taking Valtrex to suppress actual herpes virus outbreaks (e.g., cold sores) or if you want to treat the Chronic Fatigue Syndrome.

In my case, I don't have any problems with cold sores at all. I hadn't had any for at least 4 years (before Valtrex). I am taking it to treat Chronic Fatigue Syndrome and all its various symptoms.

For treating CFS, according to Dr Lerners research, you need high doses in order to reach the IC50 concentration at least 85% of the day. He writes that this is usually 4000-6000mg a day. In order to suppress herpes virus outbreaks, you can work much lower doses, I think in the patient information, they say 500mg two times a day.

So depending on your goal, that's of course a big difference.
I'm using it to treat ME/CFS. No cold sores. Going after the EBV first, then maybe adding Valcyte.

Thank you. It's taken me 6 weeks to go from 500, to 750, to 1000. I feel like crap on it. Lower function etc... still going to try and see what that 3.5 to 4 month window feels like.
My specialist RX'd this amount. Will see after my next labs if I can add a dose per day. I've heard of others treating EBV with lower doses so will be curious to hear if others weigh in...
 
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Been on Valtrex for over 2 years now (currently 2g, have been up to 6g). It does help prevent outbreaks which are part of my cluster of immune symptoms. The outbreaks are on my lips and nose only, and usually don't fully erupt.

But beyond that, I can't say Valtrex does much. No major change to PEM/PENE. No obvious overall improvement. Then again, no noticeable side effects (even at 6g, only the mildest nausea).

When I have tried reducing my Valtrex dose in the past, the herpes outbreaks return. I will likely be reducing my Valtrex dose to 1g in a few months and see how it goes.

I would like to try other antivirals (Valcyte, Famvir), but they are not covered by insurance.

Edit: It was the Open Medicine Institute which had me increase my Valtrex to 6g, then taper it to 1g. I haven't dropped to 1g yet because when I do, herpes symptoms reappear.
Were you taking the Valtrex to lower EBV levels or just the Herpes? Sorry to hear you didn't get much improvement on it...
 

Tella

Senior Member
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214
I just started Valtrex 1000 mg/day. My EBV and HHV6 IGG/IGM levels are elevated. I know from Dr Lerner's work that people stay on it many years.
I'm curious about how it's going for long term users?

Did side effects abate when improvement kicked in?
Did you get a good result in your first year?
Did you improve more in later years?
How much remission or improvement have you gotten?
Are relapses less severe?
Do you still get PEM/PENE?
Are you doing just Valtrex or Valcyte too?
Anything you'd like to add?
Hey how r u now?
 

Tella

Senior Member
Messages
372
Likes
214
I've been on both valtrex and famvir long term dealing with 2 different strans of the herpes virus.

I was on valtrex for 3 months which I believe was better for HSV1/2 for me. Famvir for 4 months was better for CMV and EBV.

For valtrex the only side effect I had was that I was dizzy and I would loose my balance sometimes.

Valtrex helped suppress my breakouts for 4 years. When I did get one it wasn't as intense as they previously were. I don't think it did much for my EBV because that came back hard with me.

On famvir the first 2 weeks I was on it, I couldn't leave my bed. The pain and fatigue were awlful. And every single Herpes family virus came out. I got a few chicken pox break outs and a low scale HSV2 break out. Which stunned my dr because famvir treats the whole spectrum of viruses in that family.

After 4 weeks on 1000 per day, I was feeling significantly better and I could leave my house and start doing things. I am still not 100%, but famvir did improve aloT of my symptoms. My only issue is that I couldn't sleep on it and it raised my heart rate slightly.

I know a lot of people on this form would suggest famvir over valtrex. I think it's whatever works for you.
Hey how r u now?
 

Tella

Senior Member
Messages
372
Likes
214
If you have EBV and HHV6 Co-infection, according to Dr Lerner, you need Valtrex plus Valcyte. Note that everyone has HHV6, so you only need Valcyte if HHV6 titers are elevated. If you are going after EBV only, Valtrex is sufficient. Also note you should test for bacterial co-infections and treat them first if needed. Dr Lerner recommends minimum Valtrex/Valcyte treatement for one year. Improvements start no earlier than 4-6 months.

All is detailed here, if you haven't already seen it:

http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

I have EBV only, HHV6 titer is IgG 1:32 and IgM negative, and no bacterial co-infections so according to Dr Lerner's protocol, Valtrex only is sufficient for me. As recommended for patients >80 kg, I took 1,500mg four times a day.

I took it for 5 months, after which my kidney function started to deteriorate, so I had to stop it for the last 2 months. In that time I switched to Famvir and Brivudine, the latter doesn't affect the kidney at all. I now try to go back to Valtrex (actually I'm using a German generic).

I had some significant improvement in the 5 months in which I took it. Especially my joint pain in the hip region almost disappeared entirely, PEM improved, my heart seems to benefit. That's why I want to go back to it as soon as possible. Brivudine and Famvir also appeared to be effective, but for Valtrex, there is the most scientific evidence, so I want to go back to it if I can.

Regarding your questions:


Did side effects abate when improvement kicked in?

I didn't have a lot of side effects in the first 3 months. Note that Dr Lerner mentions that a worsening of symptoms (Herxheimer reaction) can occur in the first 2-4 weeks, this is not a toxicity. Instead it indicates good response.

After 4 months, I started to have side effects, because my kidney function was affected. They disappeared after stopping it for 2 weeks, but improvements also disappeared.

So in my case, there is no simple yes or no. It's complicated ;)

Did you get a good result in your first year?

I got pretty good results for some symptoms in the first 5 months. Other symptoms like fatigue, energy didn't improve much. But most improvement is expected to occur after 6 months, so I hope that happens when I can continue Valtrex.

Did you improve more in later years?

Can't comment.

How much remission or improvement have you gotten?

Joint pain in the hip almost disappeared completely (I had a hard time even walking a few steps before), PEM improved, heartbeat was more regular, palpitations improved.

Are relapses less severe?

When I stopped Valtrex after 5 months, I had the feeling that most symptoms start to return after 1-2 weesk, but less severe. Though they may get more severe when I don't take it for a longer time.

Do you still get PEM/PENE?

I'm not familiar with PENE, but I have much less PEM!

Are you doing just Valtrex or Valcyte too?

Just Valtrex.

Anything you'd like to add?

What I think caused the kidney problems after 3 months was that I started Vitamin D and calcium supplements. I would advise anyone, if there is no medical reason, to take only moderate calcium, Vitamin D and phosphate including in the diet.

Hope it helps you a bit :)
Hey how r u now?
 

Tella

Senior Member
Messages
372
Likes
214
Been on Valtrex for over 2 years now (currently 2g, have been up to 6g). It does help prevent outbreaks which are part of my cluster of immune symptoms. The outbreaks are on my lips and nose only, and usually don't fully erupt.

But beyond that, I can't say Valtrex does much. No major change to PEM/PENE. No obvious overall improvement. Then again, no noticeable side effects (even at 6g, only the mildest nausea).

When I have tried reducing my Valtrex dose in the past, the herpes outbreaks return. I will likely be reducing my Valtrex dose to 1g in a few months and see how it goes.

I would like to try other antivirals (Valcyte, Famvir), but they are not covered by insurance.

Edit: It was the Open Medicine Institute which had me increase my Valtrex to 6g, then taper it to 1g. I haven't dropped to 1g yet because when I do, herpes symptoms reappear.
Hey how r u now?
 

Pearshaped

...and then things went pearshaped.
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Would also be interested how you people are doing and how severe you are/were before.
Its hard to weigh out costs/dangers and possible benefits with these serious drugs.
If one is severe,one has even more to loose.My head tells me to try it.My gut says NO WAY.
 

Haley

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@Pearshaped I can only comment on my own experience here. I've been on valtrex for about 4 years - EBV started this all off for me. I'm mild but without the valtrex I'd be pushing moderate, if not squarely within the moderate level.

The valtrex keeps me functioning enough to work. Definitely not a cure all, but keeps a lot if the symptoms at bay. I've tried coming off it multiple times but have always had a significant increase in symptoms within a week. Once I start it again it takes 4-6 weeks to get back to my previously level of function.

I do have some concerns about the long term impacts/risks of taking it, but for me its about weighing up the benefits of quailty of life vs those risks.
 
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@Pearshaped
I do have some concerns about the long term impacts/risks of taking it, but for me its about weighing up the benefits of quailty of life vs those risks.
You're fine.
Long-term use of acyclovir for up to 10 years for HSV suppression is effective and well tolerated.
From: https://academic.oup.com/jid/article/186/Supplement_1/S40/837474

Valacyclovir is basically Acyclovir with just a esterification into a prodrug so more of it gets into your body. As long as you stay hydrated you'll be fine.
I experimented and took 10g in one day and didn't drink much water, I felt my kidneys ache a little (crystallizes tubes) but just drink water and it'll clear out.


Some people report psychotic effects with aciclovir, I did get sleepy but nothing to bad, I think it has to do with this: https://en.wikipedia.org/wiki/9-Carboxymethoxymethylguanine

9-Carboxymethoxymethylguanine (CMMG) is a compound which is known as the principal metabolite of the antiviral medication aciclovir (and its prodrug valaciclovir), and has been suggested as the causative agent in the neuropsychiatric side effects sometimes associated with these medications.
 

Treeman

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I’ve been taking 4g of valacyclovir for 15 months now. I’ve been ill for 27 years and for the last 3 unable to work. My illness started with a diagnosis of EBV and whilst it slightly improved and worsened in a see sawing effect over that time I never felt well. I caught two heavy colds, Jan 2016 and spring 2017 which really pushed me over the edge.

I have improved slightly every month over the last 15 months but still not enough to return to work. In that time every symptom I have has also slightly improved but they are all still there. Learner and Montoya said that if you’ve been as ill as long as me, it’s at least 2 years. It’s a very slow and frustrating recovery, but it is a recovery. I think the medication slightly reduces the quality of my sleep but that’s worth it for the improvements. I drink lots of water as instructed and whilst I pee a lot I recently had a CT scan and no build of stones in any organs etc. where seen. I caught a low grade respiratory infection in March which turned in to vertigo which then lasted 11 weeks and I’m just now coming out of that, so no improvements over that time. I keep resting (usually laying down), up to 23 hours some days, but have other days where I’m active for maybe 3-4 hours. Even in recovery I find it’s essential to pace and rest and keep dreaming of running again. Good luck.
 
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I started off with Truvada for a few years (PreP) and my symptoms slowly improved after a year. I eventually went to a cfs specialist and tried valtrex and valcyte. I couldn’t handle all 3. I went off all except Truvada and recently added back in valtrex and feel better. I’m 95% cured