About to start antivirals — pointers?

[Hoosierfans]

Wanted to respond to this older thread and get some feedback. So this time last year I started acyclovir (500 mg 2 x day) and got some immediate benefit but it started to fade after a week or so. My doc (who is not an ME / CFS doc) bumped me up to Valtrex, also at 500 mg 2 x day.
I was on that for about 4-6 weeks with no change in symptoms, so my doc wanted me to stop it (we then pursued mold stuff).

I am now revisiting the idea of an anti-viral trial because clearly I didn’t try it long enough or high enough doses. I never tried Valgancyclovir or Famvir. I also never worked up to more that 1000 mg / day of the Valtrex.

If I can convince my new doc to make another run at anti-vitals, how to folks work up to the doses suggested by Lerner / Montoya. @Hip or @Lerner1 any thought there? Should I make another run at Valtrex but just up the dose? Or start out anew w Famvir or Valgancyclovir?

Attached below are my labs from October 2018. My results done in January 2020 were identical except my Early Antigen was negative (I believe, my doc told me but I haven’t seen it)

 

[Hip]

Dr Lerner found that when using Valtrex or Valcyte, the very first signs of improvement only appeared at the 3 or 4 month stage, and it took a year or more for the full benefits to appear.

Lerner used 4 x 1000 mg of Valtrex daily.

Lerner's criteria for active EBV is high antibody levels in the VCA IgM test and/or the EA IgG diffuse test. You do not seem to meet those criteria.

Montoya's criteria for active EBV is high VCA IgG and/or high EA IgG, which you would meet.



Valcyte is a bit more potent than Valtrex, and has a wider spectrum of activity (works against more herpesviruses).

But I heard Stanford stopped using Valcyte, because the success rate was low.

Though Stanford do not know how to correctly test for coxsackievirus B, so they may be giving Valcyte to patients with CVB infections, which might explain the low success rate. Valcyte does not work for CVB.

 

[Hoosierfans]

Dr Lerner found that when using Valtrex or Valcyte, the very first signs of improvement only appeared at the 3 or 4 month stage, and it took a year or more for the full benefits to appear.

Lerner used 4 x 1000 mg of Valtrex daily.

Lerner's criteria for active EBV is high antibody levels in the VCA IgM test and/or the EA IgG diffuse test. You do not seem to meet those criteria.

Montoya's criteria for active EBV is high VCA IgG and/or high EA IgG, which you would meet.



Valcyte is a bit more potent than Valtrex, and has a wider spectrum of activity (works against more herpesviruses).

But I heard Stanford stopped using Valcyte, because the success rate was low.

Though Stanford do not know how to correctly test for coxsackievirus B, so they may be giving Valcyte to patients with CVB infections, which might explain the low success rate. Valcyte does not work for CVB.

Hip as always, thank you. You are a gem. I’m providing my doc with your Roadmap. I wonder, do folks taper up on these anti-virals or do you just jump in at 1,000 mg 4 x day (Valtrex or Famvir) or 450 mg 3 x day (Valcyte) right out of the gate?

 

[Hip]

I wonder, do folks taper up on these anti-virals or do you just jump in at 1,000 mg 4 x day (Valtrex or Famvir) or 450 mg 3 x day (Valcyte) right out of the gate?

Myself, I always start drugs at a low dose, and build up the dose slowly over a few days, in case there are side effects.


The question of which EBV diagnostic criteria (Lerner's or Montoya's) are correct remains unanswered. As I understand it, you would not meet Lerner's criteria, so I don't think he would have offered you antivirals.

I tend to trust Lerner's theories more for Valtrex treatment of EBV, only because Lerner is the only one who conducted a study on Valtrex against EBV ME/CFS, as well as a study on Valcyte for ME/CFS involving more than one herpesvirus. But nobody really knows.

 

[Hoosierfans]

Yeah @Hip, that’s part of the conundrum for me and I have opinions all over the place; my doc last year would not let me take antivirals for more than 8 weeks without a recent positive EA. On the other hand, I have some knowledgeable folks here who have seen my labs and said OMG with those high VCA and EBVNA numbers you should absolutely treat! Then I have division between Lerner and Montoya criteria. 🙇🏻‍♀️🙇🏻‍♀️🙇🏻‍♀️🙇🏻‍♀️🙇🏻‍♀️. This did all start for me with a bad case of mono, about 14 years ago. So that’s part of the equation too. The GENIE test I did last year stated that I was fighting some “unidentified infection” and that was causing all sorts of havoc (impaired glucose metabolism, upregulated IL-1b, upregulated Toll receptor genes and a few other things)....and so far EBV is the only infection that I’ve had positive lab results for.
And then there is Prustys recent work — which suggests (if I understand it) that it’s not so much the amount of virus or form it’s in, but that the body is reacting to the fragments of active or inactive virus and causing the Mitos to go haywire.

So just thinking out loud maybe the way for me to go is to try and hit it w some antivirals while at the same time doing whatever I can to repair my Mitos. And see where that gets me.

 

[Hoosierfans]

So wanted to update this thread as a lot of shifting has been going on, new test results obtained, etc.

In the last few weeks, I tested positive (strongly so!) for 8 out of 13 antibodies tested through CellTrend. I ran the Dysautonomia / POTS panel and the Small Fiber Neuropathy panel.

I also got back my Enterovirus results from ARUP labs — echovirus was negative, Coxsakie B 2 and 5 were positive...but below Dr Chia’s criteria for treatment.

Now, we have an excellent explanation for my odd constellation of symptoms — HHV-6 and EBV (likely “smoldering”) and significant autoimmune disease that is attacking my vascular system, nervous system and nerves.

We have just started Valgancyclovir, which we will stay on as needed but plan on long term. And, my internist, autonomic neurologist and I will be meeting to discuss how to address the significant autoimmune component. Notably, I do NOT have immunodeficiency issues — my IGG total and subclasses are all fine. I am eyeing IVIG, plasmapheresis and a course of Rituximab ... but have lots of research to do! Thank you to everyone who continues to be so helpful to me on this journey... with these new results I am feeling very hopeful that I will be able to make some progress in the next year!! 🔥🙌🏻🔥🙌🏻🔥🙌🏻🔥

 

[EddieB]

I also got back my Enterovirus results from ARUP labs — echovirus was negative, Coxsakie B 2 and 5 were positive...but below Dr Chia’s criteria for treatment.

Do you plan to treat for entero virus anyway? Or do you feel the problem is elsewhere?
My ARUP test were negative, but I just got my biopsy results, positive.

 

[Hoosierfans]

Do you plan to treat for entero virus anyway? Or do you feel the problem is elsewhere?
My ARUP test were negative, but I just got my biopsy results, positive.

For me given my symptoms (skin / nerve burning everywhere, brain pressure, dizziness, lightheadedness, fainting, cognitive decline), I think the HHV-6 and the antibodies are the main culprits.

As for the enterovirus, I am going to wait a couple of months and the test again. A couple folks here gave me the idea — in general, Enterovirus antibodies should only stay elevated for a couple of months and then come down. So, since I have a few other things to start in the next few months anyway (valcyte, a couple of peptides, IVIG), I am going to wait a few months and retest. If my immune system does it’s job and the levels come down, great. And I won’t treat. But if they stay elevated then we will look into treatment. 👍🏻

 

[EddieB]

You may have read this already, but in case you haven’t...
https://www.healthrising.org/blog/2...thers-chronic-fatigue-syndrome-xifaxin-story/

Just thought it pretty interesting, how a medication that’s used off label for SIBO helped her. The story seems to assume that her root problem was SIBO, because of the improvement from xifaxan, but who knows? Her first diagnoses was with chronic EBV.