Viral reactivation on antivirals

[godlovesatrier]

Hi all,

Has anyone here had a viral reactivation on antivirals, valgan, valac, famciclovir?

I experienced this after about 7 days on famvir and I wasn't overdoing it or anything, I was resting as much as possible, yet I still got felled down. I suffered all the symptoms of an ebv reactivation but sadly on the back of that I started to get a tonsil infection which I'm still getting rid of.

I just wondered how many people had expereinced this issue, either opportunistic infections with tonsillitis while on antivirals or a confirmed viral re-activation (it seems ebv is the hardest one to control with antivirals). It got so bad that I couldn't think straight, was sleeping a lot, had tonsil pain, swollen tonsils, tons of phlegm production in ym throat which gradually just got worse.

My canker sores disappeared on antivirals and my mouth became far less dry (to not dry at all after a few days) so I am trying to find a way forward.

One approach is to take antibiotics while on the famvir to get rid of the infection, my body should then clear the viruses even if it's stressed by the famvir on its own.

I have not been tested for all co-infections, the cost is just insane, easily £1000.

Would welcome peoples thoughts/experiences.

 

[Thehealthofholly]

I have no advice, but I’m currently in the same boat. Are you sure you had a tonsil infection? What was your CBC and WBC? I’m just asking because I have all the same symptoms. I’ve been on a new herbal regimen and my tonsils are massive. I think it is EBV reactivation. I want to go get my EBV titers redrawn but I’m too tired to get up.

 

[godlovesatrier]

Hey there,

I mean it certainly felt like an infection. I say this because you can't really herx on an antiviral. But you might feel shit because of the changes in the immune system and abortively infected cells being popped. But really probably shouldnt notice much. Yet a lot of patients do and a lot don't.

Anyway I can't afford to get my wbc and CBC tested every week but I'll be getting it done in the next 7 days. If my lymphocyte count is high then I reckon it is a reactivation and I think your right it could well have been that.

I'm currently 3 days in now at a higher dose of 500mg twice a day and that seems to be much better for me. I just feel whacked most of the time or very tired. But fatigue is better and so are a few other symptoms.

Yeah I could get my ebv retested but honestly it's another £200. And ive just spent £800 on tests to check for resistant strep bacteria and Chlamydia p.

Hopefully my liver and kidney tests don't look too bad and I can continue.

Also forgot to say as of today which is day 3 my tonsils have not blown up. But I had jaw ache instead. I know from years of taking things that the immune system will work on one area and then move to another area. So possibly it worked on my tonsils and throat first and now it's moved to whatever has messed my jaw up. I only get jaw ache symptkms when taking stuff. After a strange bac infection in June 2021 which didn't show up on a culture test with the NHS.

 

[DrUniverse]

Maybe not and viral reactivation but a random co Infection?
Or some positive Herx Reaction, Lerner said you can herx really strong on anti virals.

 

[godlovesatrier]

Yeah he did, but it's not clear why. All I can think of is suppression of herpes viruses suddenly allows the immune system to work properly.

But without nk cell function tests before and after it's a bit hard to discern :/ I have to travel 60 minute south to get the cd3/4 + 8 test and it's £200 a pop. So too much for me really all in.

As for co-infections yes totally possible. Which is why I am taking knotweed, skullcap and andro tincture at present so hopefully it doesn't happen again. That kills lyme and in vitro quite a few strains of bacteria. The andro doesn't do either but it's in there anyway!

Getting tests for some co-infections next week.

 

[JES]

I think it's the antivirals and not a random infection. I trialed acyclovir/valacyclovir several years ago. The first week went so-so except for increased insomnia, but after that I quickly began to feel worse, as if hit with an infection. Another week later, I started to experience odd heart symptoms in line with myocarditis. I quickly discontinued antivirals and had to spend a month recovering from this. Obviously this is not supposed to happen as valacyclovir is even sold over-the-counter in pharmacies in my country.

A few years later I had another short go at antivirals when my ME/CFS symptoms had progressed. This time, I couldn't even tolerate more than a couple of days before my immune system reacted negatively.

I have a few hypotheses as to why such a negative reaction could happen. One is indeed some sort of viral reactivation or the immune system suddenly starting to recognize one of the herpesviruses following administration of antiviral. It could be that our compromised immune system becomes overwhelmed with fighting the virus or it might even be that this allows another type of latent virus to reactivate, causing the problems. I reckon that these type of antivirals were not really developed for viral issues that ME/CFS patients are facing, but rather for temporary viral re-activation of herpesviruses in healthy persons, which is a very different thing.

The other possibility is that these antivirals in general weaken our already compromised immune system through secondary effects on the immune system and metabolism. Below is a quote from Q&A with Robert Naviaux about this risk. I don't know which hypothesis is more likely to be correct and unfortunately I wasn't able to get any immune system markers tested before and after, but what I'm sure of is that antiherpesvirals of this class are not an option for me.

In addition, all antivirals have metabolic effects that have nothing to do with inhibiting viral DNA
or RNA synthesis directly. Many antiviral drugs inhibit the key metabolic enzyme S-
Adenosylhomocysteine Hydrolase (SAHH). Inhibition of SAHH causes an increase in
intracellular SAH levels. SAH is a potent inhibitor of DNA, RNA, protein, and small molecule
methylation. This affects both viral and host cell epigenetics, gene expression, mRNA
translation, and protein stability. The inhibition of methylation reactions in the cell also affects
neurotransmitter (dopamine, norepinephrine, and serotonin) and phosphatidylcholine membrane
lipid synthesis, folate and B12 metabolism, and many other reactions. So by giving antivirals,
doctors are not just inhibiting viruses, they are also inhibiting many host cell metabolic functions.
Sometimes the inhibition of host cell functions can attenuate ME/CFS symptoms for a time, but
in other cases, using potent antiviral drugs inhibits mitochondrial and methylation reactions and
can delay a full recovery from ME/CFS.

 

[godlovesatrier]

Yes but it does work for some, we can go back to Navaiux's quote as many times as we like and it might explain why they don't work for some people, or why we react oddly, but it doesn't mean they won't work at all.

Like you I've got to give it a go and many others have done the same as I have, the downside with famvir or valtrex or valcyte is really the 3 to 6 month delay before you really know whether you're in a better or worse place. Though when I stopped famvir on day 8 I got back to a good place with reishi and oat bran within 3 days. This is partly because the joshua leisk protocol has detoxed my body amazingly well and got me into a good place. I tolerate gluten ok now on the whole, I hope something...might not be famvir, will get me the rest of the way.

Interesting that you experienced insomnia, as that certainly is an issue at the 1g per day dose I am at right now.

When you say your immune system reacted negatively the second time, what were your symptoms that time?

And you're right it could open a hole for other viruses to reactivate and cause more damage, this is always possible. Thanks for replying with your experiences.

 

[heapsreal]

IRIS/immune reconstitution inflammatory syndrome can happen in the beginning with HIV pts starting arv's. Something similar can happen with AVs . Viral load can be reduced and this free's up the immune system which can increase inflammation as it can start going after other infections.

 

[heapsreal]

IRIS/immune reconstitution inflammatory syndrome can happen in the beginning with HIV pts starting arv's. Something similar can happen with AVs . Viral load can be reduced and this free's up the immune system which can increase inflammation as it can start going after other infections.

https://en.m.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome

Immune reconstitution inflammatory syndrome (IRIS) is a condition seen in some cases of AIDS or immunosuppression, in which the immune system begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.[1]

 

[godlovesatrier]

Thanks heaps. I couldn't remember the details.

 

[Hipsman]

Immune reconstitution inflammatory syndrome (IRIS) is a condition seen in some cases of AIDS or immunosuppression, in which the immune system begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.[1]

Maybe if we had access to better antivirals that work for all herper viruses this would be less of an issue? Brincidofovir should work for all herpes viruses, unless you have resistence to cidofovir as brincidofovir is a prodrug of cidofovir.

By the way, there might be brincidofovir groupbuy in coming month in me/cfs discord server, anyone can join, price is around 100$ for yearly supply.

 

[godlovesatrier]

Is that a new drug @Hipsman ? What I mean is did it come after valtrex valcyte? And it says online it's mainly aimed at cmv. Ant sources for it acting on other viruses?

I think right now I'm just left with nervous system reactions to the drug. Aka insomnia, angry and snappy emotional state, difficulty concentrating and impatience. Although that could be immune inflamation too and thats why I'll have to wait a few months to see if it subsides on its own.

I'll look into the cost of Brincidofovir

 

[Hipsman]

Is that a new drug @Hipsman ? What I mean is did it come after valtrex valcyte? And it says online it's mainly aimed at cmv. Ant sources for it acting on other viruses?

Yes, 2021 approved in US, less than a year on the market, it's not sold in pharmacies, only doctor can give to you. It's a prodrug of cidofovir, releses cidofovir intracellularly if I remember correctly.

My sources for effectivness:
Heatmap of effectivness, from here: https://www.sciencedirect.com/science/article/pii/S0166354218306570?via=ihub

And for hhv-7 I found this quote:

Note that brincidofovir, also known as CMX001, is an orally administered lipid-ester derivative of cidofovir that is active against numerous DNA viruses, including HHV-6 and HHV-7

https://sci-hub.hkvisa.net/10.1128/microbiolspec.DMIH2-0007-2015

I can give invite to our me/cfs server where we gathred all importand info on this drug including side-effects, just let me know.

 

[godlovesatrier]

Nice. That could be a winner then!

Saying that many of us have multiple illnesses. So even if we did take the antiviral might not be enough.

At any rate good news about the multi buy I'll keep my eyes peeled.

 

[Alenka]

I can give invite to our me/cfs server where we gathred all importand info on this drug including side-effects, just let me know.

Could you please email the invite to me too?