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Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

Wonkmonk

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I believe people with EBV and HHV6 have responded to valacyclovir.
I also have elevated EBV-EA antibodies and positive (but not elevated) HHV6 and I responded very well to Valacyclovir. I took a higher dose (6 grams a day) though.

I'm still feeling pretty 'off'. Have been on the 1000mg for eight days now.
This could be what Dr Lerner terms a Jarish-Herxheimer reaction. It took about 6 weeks in my case to subside and partial recovery started thereafter.

Although I am not sure how it plays out at a much lower dose as Dr Lerner recommends 4 grams a day (6 grams for people >80 kilograms).
 

2Cor.12:9

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@Learner1 Yes - other anti-virals are possibilities if the valacyclovir doesn't help - will evaluate at three months. I believe people with EBV and HHV6 have responded to valacyclovir.
@2Cor.12:9 - happy to compare notes as we go. I'm still feeling pretty 'off'. Have been on the 1000mg for eight days now.
@stephano75 I've finished day 13 and the initial side effects of flu-like symptoms seem to have subsided. The only side effects I'm having now is a worsening of fatigue - which is keeping me in bed most of the day. (But then I wasn't much better off than that before I started it anyway). I'm determined to stay the course unless something changes. I want to see if I experience improvement at the 3.5-4 month mark, as others have reported. How are you doing?
 

2Cor.12:9

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[/Qs.UOTE]

@stephano75 - Glad to hear you can keep sticking with it so far. I was dx'd in 1986 with acute EBV which never went away. Very sick. After several months they rechecked the EBV levels and the doctor called it Chronic EBV. Said it was most likely the same thing going on in Incline Village, Nevada - which was not far from where I lived. I was bedridden for several years and have continued to be off and on ever since. At times I've recovered to about 75 % but then relapsed. Was never able to work outside the home. I've never had a CFS specialist but have had a number of compassionate open minded doctors willing to try different treatments. This is my first shot at an antiviral .

A few years ago I was tested for Lyme and a number of other viruses, --the HHV6 titer came back high (1:1260) - I haven't had any recent viral tests, because my doctor knows my history and is willing to try anything that is safe.

After 31 years of being sick I don't see any point in getting more tests for viruses I know I have. I don't really care about titers and viral loads - it is what it is. I'm going to try to give Valtrex a year. I might consider Valcyte later, but it's pricey. I've been taking 500 mg - 3 times a day for 15 days now. Makes my fatigue worse, but I can live with that since I don't have to work.

Good luck!
 

Learner1

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I started on valacyclovir, 1g a day. My insurance balked at my taking 2g a day. Interestingly, they have no problem with high dose generic valganciclovir. I know both are expensive but impossible to figure out what my insurance actually psys or if they get any kickbacks.

Liver and kidneys should be monitored on these drugs.
 

Jessie 107

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Hello,
I am new to all this I got diagnosed a year ago and I have got alot worse since then.
I am now house bound and feeling desperate.
I am in the UK.
My question is, how do I go about getting antivirals?
Would my own GP be able to prescribe them?
And how do I find out which virus I have!? I have had all the standard blood tests done, all were normal.
Appreciate your help
Regards
Jessie
 

Wonkmonk

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Hello Jessie,

can't comment on how to get antivirals in the UK, but regarding the virus diagnostic, if you think a herpes virus might be responsible for your disease, a starting point would be to follow the diagnostics proposed by Dr Martin Lerner:

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

That would include the following herpesvirus antibody tests plus bacterial co-infections:

EBV IgG
EBV IgM
EBV EA diffuse

CMV IgG
CMV IgM

HHV6 IgG
HHV6 IgM

A red flag usually is positive IgM titers or EBV EA diffuse titers or highly elevated IgG titers for any of these viruses. If tested positive, your treatment will depend on which of those three is positive.

It's also important to test the following bacterial co-infections because these can make antiviral therapy ineffective:

Borrelia Burgdorferi
Babesia Microtii
Anaplasma phagocytophila
Mycoplasma pneumoniae
Antistreptolysin-O

If any of these is found to be persisting, antibiotic treatment would have to precede your antiviral treatment.
 

Learner1

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Hello Jessie,

can't comment on how to get antivirals in the UK, but regarding the virus diagnostic, if you think a herpes virus might be responsible for your disease, a starting point would be to follow the diagnostics proposed by Dr Martin Lerner:

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

That would include the following herpesvirus antibody tests plus bacterial co-infections:

EBV IgG
EBV IgM
EBV EA diffuse

CMV IgG
CMV IgM

HHV6 IgG
HHV6 IgM

A red flag usually is positive IgM titers or EBV EA diffuse titers or highly elevated IgG titers for any of these viruses. If tested positive, your treatment will depend on which of those three is positive.

It's also important to test the following bacterial co-infections because these can make antiviral therapy ineffective:

Borrelia Burgdorferi
Babesia Microtii
Anaplasma phagocytophila
Mycoplasma pneumoniae
Antistreptolysin-O

If any of these is found to be persisting, antibiotic treatment would have to precede your antiviral treatment.
For EBV, I'd add doing VCA IgG and IgM and PCR tests. My EBNA and EA were negative because my immune system was so dysfunctional, but the doctor (a top US ME/CFS expert) found it with the PCR and VCA tests.

My doctor also tested for:

Parvovirus B19
Chlamydia pneumoniae

It is possible to take antivirals and antibiotics at the same time if you have multiple infections.

Also, depending on your symptoms, you may find that infections could have driven your system to create antibodies inappropriately, causing symptoms. There are panels that can be run to identify these.

Best to start with finding which infections you may have and treating appropriately.
 
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Hi @2Cor.12:9 (and anyone else who's interested!) - just thought I'd post an update on my adventures with Valtrex (valacyclovir). I've now been on 1000mg for a bit over a month. (I'll increase that to 2000 in a few weeks). Whatever the lowest level of cautious optimism that exists as part of human consciousness, divide that by ten ... and that's where I am. That is - I actually do feel as though some good things are starting to happen in terms of improved mood, cognitive function and POTS symptoms. For me it's a triumph of sorts to even be able to stay on a medication for this long, so that's good! Will post again once I've upped it to 2000mg (which is the dose my doctor wants me to stay on for a few months to judge things). Cheers, Stephen
 

2Cor.12:9

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Whatever the lowest level of cautious optimism that exists as part of human consciousness, divide that by ten ... and that's where I am. That is - I actually do feel as though some good things are starting to happen
@stephano75 Ha! That's funny - I'm glad to hear you're feeling hopeful. Please keep us informed.
I'm not sure what's going on with me yet - I want to try this for at least 6 months.
 
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I too seem to be feeling some benefits from aciclovir at 400 mg 3 X a day. I started taking it at the beginning of August, had quite a dip but was determined to stay within my energy envelope as much as I could for the first three months since in my logic, since B cells get renewed after ~ 3 months I wanted to do my best to let the new ones emerge free of EBV.

I started with ME after 2 bouts of glandular fever 18 years ago.
This is the first treatment that seems to be doing something good for me. Whoooopeeee.

I' m trying hard not to get too excited......but failing all over the place. Good luck to you all too!
 

2Cor.12:9

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I too seem to be feeling some benefits from aciclovir at 400 mg 3 X a day. I started taking it at the beginning of August, had quite a dip but was determined to stay within my energy envelope as much as I could for the first three months since in my logic, since B cells get renewed after ~ 3 months I wanted to do my best to let the new ones emerge free of EBV.
@Janice Hargreaves This is so good to hear! So are you saying that you felt worse the first 3 months and have now started to feel better? I've been feeling worse as well (I've been on it 6 weeks). I have to say that I requested Valtrex because I've been in an extended relapse. But I know that the Valtrex has made me more fatigued because I started of with 500 mg - 3 times a day. When I cut back to twice daily it seemed to help the fatigue lift somewhat.

Have you noticed the improvement in any particular symptoms? I've had ME/CFS for so long that I will be surprised if it helps anything at all. But well see....
 

Binkie4

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@Janice Hargreaves

Really pleased you are doing well and so quickly. Did you see Dr Bansal in the end?

I am in my 7th month and suspect there is real improvement. But I have a heart issue that is rapidly worsening and I need surgery very soon. It prevents me knowing what is really going on. Success stories however give me real hope that I am improved. May you continue well.

What has confused me a bit is that we are taking quite a low dose in comparison with many in the US. I wonder why that is. Also I didn't know about the B cells taking 3 months to recover. I was still very ill in month 4.

Get well soon anyway.

EDIT: a capital letter and soon in last sentence
 
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Yes for first two or three months my energy levels seemed worse plus a few minor side effects.

In my tin pot unprofessional view, for long time I'd felt I was using energy to keep latent viruses dormant. So when I tried too hard to improve, I went beyond my energy envelope and the viruses got free to cause typical flu like malaise plus palpitations, etc, etc.

No tests were allowed to be done in UK by NHS to check except for CMV and Hep C, both neg. There was no point me getting private viral tests done since the NHS would not take any notice of them.

So in the end I decided I'd like to try Aciclovir since I understood from Dr Bansal that it has a good safety profile and has been used for so long as to be off patent.

I had to see Dr Bansal privately because my CCG would not fund a consultation to see a specialist in ME.

I don't expect this to cure me since the latent viruses will remain. However if it improves my quality of life then I felt it was worth a shot.

**** But please take full medical advice and guidance. This is purely anecdotal and so unreliable as scientific data. *******
 

2Cor.12:9

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Yes for first two or three months my energy levels seemed worse plus a few minor side effects.

I don't expect this to cure me since the latent viruses will remain. However if it improves my quality of life then I felt it was worth a shot.

**** But please take full medical advice and guidance. This is purely anecdotal and so unreliable as scientific data. *******
@Janice Hargreaves - good to hear - thanks. I don't expect a cure either or even a full remission - especially after over 30 years of being sick. But I'll take anything I can get. :)

I'm in the US. My dr is not a CFS specialist, but she's open minded, compassionate, and.willing to try anything that won't hurt me. When I presented Dr. Lerner's protocol to her we both were nervous about trying that high of dose (I'm in my late 60's) But we were comfortable with a lower dose of Valtrex. So I'm happy to hear you've got some improvement with the doses your on. Please keep us posted on your progress.
 

Jessie 107

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I too seem to be feeling some benefits from aciclovir at 400 mg 3 X a day. I started taking it at the beginning of August, had quite a dip but was determined to stay within my energy envelope as much as I could for the first three months since in my logic, since B cells get renewed after ~ 3 months I wanted to do my best to let the new ones emerge free of EBV.

I started with ME after 2 bouts of glandular fever 18 years ago.
This is the first treatment that seems to be doing something good for me. Whoooopeeee.

I' m trying hard not to get too excited......but failing all over the place. Good luck to you all too!
Hello,
Very good to hear you are getting some benefit from taking this.
Can I ask if you are in the UK? And did your Gp prescribed it for you?
 
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Yes I am in the UK.

No my GP said the CCG would not fund my referral to a different region to see a specialist Immunologist with 10 years experience treating ME/CFS.
I went private. The first consultation cost £250 plus about £65 for three months supply of Acicclovir.

I then discussed this with the senior partner in my GP practice and he has since agreed to prescribe 6 months of Aciclovir.
 
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Hi all - just thought I'd post an update on my treatment with Valtrex (valaciclovir).

In an earlier post I wrote:

"Whatever the lowest level of cautious optimism that exists as part of human consciousness, divide that by ten ... and that's where I am".

At that stage I had been on 1000mg a day for a bit over a month. As much as I am reluctant to allow myself a higher level of optimism (considering it's been 21 years of CFS - half my life, from age 21 to 42) there is no doubt this medication is helping. I am scarred by endless false starts with this illness ... but the rational part of me - carefully tracking symptoms etc - has to trump the cautious/superstitious part here! Details as follows (and see previous posts of mine in this thread):

I've now been on Valtrex for three months in total. (Comprising 1000mg for two months, then 1500mg for two weeks approx, then 2000mg {1000mg twice per day} for a bit over two weeks. I'll continue on the 2000mg; this is the dose my US doctor has had good results with. (I'm in Australia, but my treatment is being overseen by a US doctor. He contacted my local doctor, who is supportive and happy to prescribe the med).

There are clear improvements in:
  • CNS sensitivity - less anxiety, sensitivity to noise/stimulus, improved mood.
  • POTS - noticeable improvement here.
  • Tolerance of cardio exercise. Hard to believe I would ever write this ... but there have been a couple of instances now where I have felt better after mild cardio exercise.
  • I have put on weight/condition - (IE in a good way)
  • Circadian rhythm has shifted back from its constantly delayed state - I'm waking up earlier.
  • Libido and sexual function generally better
Negatives? No question the pros are outweighing the cons, but nothing's perfect. I think my poor GIT function is even worse on this med. Bloating and slow digestion is worsened. My suspicion is this could be to do with Gilbert's Syndrome (which I have). This is a liver condition, officially given 'benign' status by western medicine, but there are peer-reviewed articles (in the Lancet) disputing this. 'Non-specific' symptoms such as fatigue, mood issues, digestive issues etc seem to be regularly reported by sufferers, and there is the suggestion in the literature that Gilbert's is a predisposing factor for CFS. Gilbert's is a genetic condition; sufferers have significantly less of some of the liver enzymes involved in glucuronidation (part of phase two liver detoxification of various hormones, drugs etc). So - it may well be that adding this medication to already slightly compromised liver function could worsen digestion. Pure speculation, of course.

Sleep - I mentioned improved circadian rhythm, but sleep quality is still not always great. Often wake in middle of night and can't get back to sleep. My sleep quality was usually not particularly restorative anyway before the med .. but the waking up thing was less common ... so I think this is (at least partially) due to the med.
Cognitive clarity. Sometimes it's better ... but I think the sleep issues are compromising it. I couldn't remember for the life of me if I'd had a morning shower or not the other day. My girlfriend pointed out that I'd shaved, so I'd probably done that after stepping out of the shower! With that prompt, I was able to remember. So - safe to say my mind's not exactly a steel trap. More like a stale marshmallow surrounded by cotton wool. But we'll see what the future brings!

So - as I said - pros easily outweighing cons. I'll stay on this med and this dose for a while, and see what my doctor advises. I'm now calling this 'qualified, cautiously cautious, guarded optimism'. (!)
Will post another update down the track. Best of luck to all!
Stephen
 

2Cor.12:9

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I've now been on Valtrex for three months in total. (Comprising 1000mg for two months, then 1500mg for two weeks approx, then 2000mg {1000mg twice per day} for a bit over two weeks. I'll continue on the 2000mg; this is the dose my US doctor has had good results with.
@stephano75 - So good to hear about the progress you've made! Three months for me too. I started with 1500 mg for about a month but it made me so much more fatigued I cut back to 1000. It's hard to say if I have any significant improvement because my fatigue isn't any better. But I do believe there have been some subtle changes. But I'm beginning to think the dose may not be high enough. Did you notice the improvements when you bumped up to 2000?

Also, are you by chance taking celebrex with this? I'm seeing my doctor this week and am going to ask about switching to Famvir and adding celebrex.

Thank you for the update!