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

[Tella]

Who are you asking?

But u talked about meds on a diff old thread. I read it

 

[sometexan84]

Might as well share my Valtrex experience here as well.

TL;DR - Feel great! Still very early on though.

Almost 7 weeks into Valacyclovir. Not a lot happened. Then symptoms got much worse all of a sudden. Exactly 6 wks in, had 5 consecutive bedridden days, which is a record for me. Days 4-5 of which included some nausea and headaches, which is not normal for me. But, yesterday, started feeling slightly better. And today, the fatigue lifted completely.

Again, it's still very early. But I feel like I JUST went through (or GOT through) the Herxheimer-like reaction (call it what you will), with the temporary worsening of symptoms a few weeks in. And like @hopeandsparkles mentioned, this effect fits exactly w/ what Lerner said, and exactly what the info here says from Dr Myhill (which @hopeandsparkles linked to, but I'll add it again here - https://www.drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome). At least it's been this way for me.

btw, I've been doing 1.5 grams/day (3x 500mg). Increased to 2.0 grams/day (4x 500mg) a couple weeks ago. I have high EBV titers (no other viruses detected thus far). I'm 170 lb.

 

[EddieB]

Might as well share my Valtrex experience here as well.

TL;DR - Feel great! Still very early on though.
.

How are you doing? Is there still improvement? I’m seriously considering going on Valacyclovir.

 

[sometexan84]

It's only been 2 months and 4 days so far. But, I haven't had any major bedridden experiences, since what I described before. Maybe slightly less PEM. I'd say either same or ever so slightly better since the time of my last post.

At some point, I'll be retesting my EBV levels, hoping to see a decrease in Early Antigen.

I should probably edit my last post (not sure how though). Because I've since found chronic active Echovirus 11, and possible active Chlamydia pneumoniae.

 

[EddieB]

That is great news, good for you!

I’m seeing an immunologist that is not that experienced with cfs, but has offered to prescribe me Valacyclovir at 500 mg 2x day, isn’t comfortable going any higher for now. I’m don’t know if that’s going to be enough to have the desired effect. I’m 150 lbs.

Oxymatrine is used for treatment of the echovirus, not sure if you can treat both at the same time. I did entero/echo testing through ARUP lab recently, came back all negative. My EBV has consistently been sky high, no hh6 or cmv. So I think that make me a candidate for the valtrex.

To edit, click the “edit” below your post, make your changes, the hit save.

 

[sometexan84]

I think the edit button maybe goes away after a time?

I think it's important to be taking the Valtrex 3 or 4 times a day. So that it stays effective in your system a bit more constantly.

 

[EddieB]

I think the edit button maybe goes away after a time?

You also have to be logged in?

That’s what I’m afraid of, if I don’t take enough, might make things worse.

 

[EddieB]

Just found this, in one of Hip’s posts...
In non-responders to Valtrex, Dr Lerner would sometimes add cimetidine (500 mg twice daily) or probenecid (500 mg twice daily), which potentiate blood concentrations of this antiviral drug.
Anyone tried it?

 

[heapsreal]

One can always consider famvir, it may have a similar half life to valtrex but its intracellular half life is 18hrs which may be worth considering.

 

[EddieB]

One can always consider famvir,

Not sure why, but it’s been said the famvir is tolorable when the valcyclovir isn’t. Keeping it in mind, thanks.

 

[EddieB]

I found these guidelines, going to print and take to my immunologist that gave me the valcyclovir. If I’m going to try this, I’ll have to get her to write scripts and order routine tests, may take some persuading. This plan seems a little more conservative than some of the others.
https://www.drpodell.org/ValtrexConsent.pdf

 

[gbells]

We've discussed this. They have a large anti-inflammatory effect that are most likely causing the improvement and are very expensive. Have you tried a low inflammation diet and time release curcumin which is also anti-inflammatory? Could save you a lot of money and get the same result.

 

[EddieB]

We've discussed this. They have a large anti-inflammatory effect that are most likely causing the improvement and are very expensive. Have you tried a low inflammation diet and time release curcumin which is also anti-inflammatory?

I’m on a pretty restricted diet. My stomach can’t handle the curcumin.

According to my immunologist, my C reactive protein is normal, indicating inflammation is low. Not sure if that’s an accurate indicator for this.

 

[gbells]

I’m on a pretty restricted diet. My stomach can’t handle the curcumin.

According to my immunologist, my C reactive protein is normal, indicating inflammation is low. Not sure if that’s an accurate indicator for this.

This study shows about 80% sensitivity for cholecystitis inflammation. Tissue areas that are painful (dolor) when you press on them, have signs of swelling (ie. increasing hat size, tigher shoes-tumor), and increased redness (rubor) suggest inflammation. Some viruses (EBV) trigger chronic inflammation by upregulating Nf-kb. I had all of these and they were helped greatly doing this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5908901/

 

[EddieB]

Thank you gbells for responding. But I’m yuking up someone’s thread with tmi. Was just looking for success that others are having with valcyclovir. Sorry. More about me here, https://forums.phoenixrising.me/threads/long-time-reader-new-member.78862/post-2284182

 

[EddieB]

One can always consider famvir, it may have a similar half life to valtrex but its intracellular half life is 18hrs which may be worth considering.

Do you think that famivir might be easier on the stomach than valcyclovir? I can’t seem to tolerate it.

 

[heapsreal]

Do you think that famivir might be easier on the stomach than valcyclovir? I can’t seem to tolerate it.

Its worth a shot. Ive taken famvir on an empty stomache alot with no issues. But i do have an iron guts compared to most cfsers.

 

[EddieB]

Its worth a shot. Ive taken famvir on an empty stomache alot with no issues. But i do have an iron guts compared to most cfsers.

Thanks!