Advice with valacyclovir

[runeriver229]

Hi,

CFS since 2012. Working my way through treatments and started valacyclovir a couple of weeks ago. Positive EA diffuse EBV (negative HHV-6 and cytomegalovirus).

Managed 500mg once a day for 7 days and then had to stop because I felt so flared up, fatigue, aches, pain, hot flushes, brain fog, headaches etc. Neck was worse area affected it was agony. A lot of nerve pain which I never got before and some small shingles looking rashes so that may be a factor too.

Been 1 week since I stopped and still feel well off my baseline.

Is there anyone else who was also this sensitive and if so what kind of dosage plan did you do? Would it be better to take the smallest amount I can everyday, so perhaps 250mg, 125mg etc whatever dose I can tolerate daily. Or would it be better to do rounds at a higher dose, maybe 500mg or 1g daily for a week then rest until I feel better and go again.

 

[cfs since 1998]

Yep I went permanently from mild to severe thanks to Valacyclovir (1g/day for 2 days did it). That was in 2023. I scoured the internet for side effect reports and couldn't find anything like what I experienced. I have excellent kidney and liver function so highly doubt I had any kind of toxicity, plus toxicity typically does not start that fast, and is normally reversible. It literally made just my ME/CFS symptoms worse.

I tried taking it again in 2024. I worked up very, VERY slowly by starting with a tiny particle of a pill, literally almost invisible. I eventually worked up my previous dose of 1g/day (actually 500mg twice a day) and did not worsen once I was on that steady-state dose. However, after six months, I decided to give up, and I started to taper it down. But every time I lowered the dose, I developed full body burning pain (neuropathic pain).

The bizarre symptoms when LOWERING the dose is what really made me stop and think. Since then I also found out I have a bona fide immune defect (IgM deficiency), plus the unusual EBV antibody pattern described in Osler's Web (I'm EBNA negative), plus a doctor was stunned at how big my cervical lymph nodes were (no sign of lymphoma yet). So putting those signs together I decided to start a 3rd time as of Spring 2025. I've lost my previous tolerance and have had to titrate all over again just like I did before.

I wouldn't pulse it like you mentioned. I'd just start at a very very low dose and work up very very gradually.

I initially tried to compound my own doses using a mortar and pestle and sugar/salt as a filler but that didn't work so well. It's hard to ensure it is mixed evenly. I eventually found it easier just to crumble the pills and take pieces of the desired size. Once I got up to a big enough dose, I switched to a knife and used some creative cutting patterns.

One of our mods, @Shanti1, has written about her Valacyclovir experience. It took her 6 months to work up to the max dose.

 

[runeriver229]

Thanks for the reply. That's scary, and you're still permanently worse from those inital 2 doses?

I agree I've done some hardcore Lyme treatments in the past with liver/kidney function tests every 6 weeks and everytime I'm told they are perfect, I'm convinced it's an immune response. I also have had very similiar feelings with other anti-viral herbs.

I'll start cutting them up then! A few years back I splurged on some scientific scales which go to 10mg precision and I have had so many uses for them!

Fingers crossed this round of valacyclovir yeilds some positives for you.

 

[NameHere]

I do not know if I have CFS (am here to find out), but I'll offer my experience: when I briefly took valacyclovir, I had a psychiatric reaction, so my ENT moved me to famciclovir, which I am tolerating well. What did your doc say about your reaction?