Drug Valtrex/Valacyclovir Regimes

[kst88]

Hey everyone, I'm new here but excited to get involved and get to know people.

My name is Kristina, I'm based in London, 27yrs old, have had ME (ranging from moderate to severe) for the past 4yrs, and tried a variety of treatments. The latest one is Valtrex, following Dr. Lerner's protocol (found here: http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf ), which I found and my immunologist agreed to trial because I have high EBV and HHV6 antibody levels (VCA IgG 590 U/ml and IgG Ab. titre of 1:320, respectively), with the required liver function tests done regularly.

I know there are threads that discuss Valtrex and other antivirals, but I've noticed that everyone is on different treatment protocols and dosages, and I would like to hear about your detailed experiences with this drug.

Please include: dosage, frequency, side effects, time taking it, and if you don't mind also the length and severity of your ME, as well as what antibodies you tested highly for. I believe getting some more specific and detailed information can help us all navigate this very vague world of antivirals treatment, as there is so little info out there.

Thanks in advance, I look forward to hearing from you! Also happy to share any more details about my treatment so far (I've only just started, 2 months and you're supposed to only see benefits after 3.5 at the soonest) if anyone's interested.

Kristina

 

[Hip]

I have high EBV and HHV6 antibody levels (VCA IgG 590 U/ml and IgG Ab. titre of 1:320, respectively)

Dr Lerner actually used Valcyte rather than Valtrex when HHV-6 or cytomegalovirus are involved. Valtrex only works for EBV, whereas Valcyte works for all three of these herpesviruses.

 

[Remy]

I saw Lerner in 2013. I was positive for EBV, CMV, and HHV6.

He had me taking 4g/day of Valtrex and 900 mg of Valcyte twice a day.

I was at a 3 when I started and at a 5 when I stopped, though I relapsed for other reasons in 2015.

I took the antivirals for about 2 years total. It was not a cure for me, but I don’t regret trying.

 

[Not dead yet!]

I am still taking Valtrex 1g at 2x/day on a 3 months on/off basis. It has been two years (?) and it isn't a cure, but it does help and has interrupted a crash in the past.

My personal opinion is that it's controlling something that would be a secondary infection to whatever ME/CFS is really caused by. I haven't tried Valcyte.

 

[Lisa L.]

Hi everyone. I cannot remember the dosage now but I took valacyclovir and followed Dr. Lerner’s protocal for about a year and a half. There was no improvement, in fact it only made the exhaustion worst. But, I’ve been sick for over three decades and I think when you take it can make a big difference. The earlier the better, the more acute the better. It was more than disappointing. For the first time in years, I had some hope that maybe something would help. I hope it helps you!

 

[Treeman]

Hi kst88, Can you give me any feedback on how your medication and health has progressed? Thanks.

Treeman

 

[Dom]

Valac didn't do anything for me either. Just depression, terrible dizziness and very unstable energy (something I run into all the time now no matter what I take as a treatment), plus the fatigue got bad and I had very painful joint pain where my joints felt like they were locking up.

I just don't think it agrees with some of us. I titrated up to 1g but struggled to get much past that. Bizarrely I had one 24 hour period on it where I went into remission, then the next day hard crash and took me 6 weeks to recover. Valgan is so expensive, doubt I'll ever be able to try that.

 

[CantosMaria]

My immunity is so fed. I have Lyme, mold toxicity, MCAS, MCS, long covid and bizzare immune suppression. I tried valganciclovir, it made me thing extremely bad after only one tablet. So be aware that this antiviral can make things much worse.
And no it was not herx reaction.

 

[TracyD]

Valtrex and famvir help me moderately. Valtrex helps a lot. After two periods of trying it but discontinuing due to side effects, I decided to take only half a dose, which worked great. Then I weaned myself off it, only to find that I needed it occasionally - presumably to knock out any reactivated viruses. So now I take one pill every five days as the default , but I increase the frequency in bad times.

Too many details are here: https://tracyduvall.com/2018/10/01/valcyte-and-me/ Here's the most important part:

Results: Once again, something related to my digestion got much better overnight. In this case, my IBS has become much, much less limiting as long as I take a regular, multi-strain probiotic; before, I was dependent on a second, groovy probiotic from Japan and still not as healthy. More importantly, some of the core symptoms of my ME/CFS markedly improved overnight and have continued to do so. These include:

• Lower heart rate while performing my usual activities
• Able to tolerate activities that are longer or more intense (that is, with a higher heart rate) without triggering post-exertional malaise (PEM)
• Shorter PEM
• Better able to handle temperature extremes
• Sleeping less

Unfortunately, I’m not back to normal for any of these issues, and I have plenty of symptoms that didn’t improve at all.

 

[alleotheta]

Hey all! I have been curious about other's experiences with the Pridgen Protocol (famvir + celebrex).

I found this study while down a rabbit hole:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328426/

Given that I was dx'd with HSV 20 years ago, I got my MD to experiment with this drug combo, just started.

Has anyone else done this? Wondering about remission timelines, side effects, tips, etc.

Thanks in advance!

 

[GforGeorgie]

I have chronically reactivated Herpes simplex so have been on and off valtrex for years. I did notice that when I took it everyday to suppress outbreaks, my fibro and CFS symptoms were better.

Interestingly, last year I had an outbreak while also having a pain flare. I took a mega dose (1500g x 2 day for a few days) and my pain flare stopped overnight, along with the outbreak symptoms. This was really unusual and another sign that the two were linked somehow.

Following that, I went on 500g every day. Along with a bunch of other treatments, I pretty much recovered in 6 months. I'm now almost 12 months symptom free, after 20 years of fibro and fatigue!!! It's hard to say what treatments played what part but I assume the valtrex is contributing.

I started having outbreaks again a few months ago, despite being on 500g a day so I've just doubled that to 500g twice per day. I'm fortunate not to have any side effects from it and am very grateful for it's anti-viral effects.