Which drugs are effective against herpesviruses HSV, EBV, CMV, VZV, HHV6, HHV8?

[Learner1]

Doctors interpret the serology in different ways, but personally I don't see evidence that you have a re-activation of either EBV or VZV:

Your interpretation has some serious problems. This is why too many patients are wrongly told they don't have reactivations. Many of us aren't adequately making antibodies.

Running quantitative PCR tests more than once, in case the virus is hiding in the tissues and not in the blood on the first negative test, can be extremely helpful.

Of course, serology is never a perfect guide as to whether a re-activation of a herpesvirus.

Exactly.

You have told @MartinK authoritatively he doesn't have a problem with these viruses when he very well might.

VZV IgM antibody is probably the most relevant antibody in determining whether there may be a reactivation. Your IgM antibodies are within the stated reference range.

IgM only shows up with a first time, acute infection, not necessarily in a reactivation. And, if the infection is chronic, lasting more than 3.5 weeks, the body may stop making them, even if the infection is active.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5370824/

EBV Early Antigen (EA) is probably the most relevant IgG antibody in determining whether there may be a reactivation. Your EA antibodies are within the stated reference range

This is a problem. Not everyone makes EA. I had several doctors miss my EBV because they interpreted results like you do. My EA was zero, but I was PCR positive for EBV and going on Valcyte was a game changer for me.

These charts are from the attached papers and are about interpreting EBV serology in IMMUNOCOMPETENT patients, which many of us are not. Note that the case of only high VCA IgG, which is pretty common in ME/CFS patients, says more testing is required, e.g., PCR testing, which will catch the DNA of the virus (if it's in the blood, so repeating at a couple weeks apart is critical for some).

valtrex specifically caused kidney stones,

Dietary oxalates, along with a lack of oxalate degrading bacteria in the gut microbiome are typically what cause kidney stones.

 

[Learner1]

Which drugs are effective against herpesviruses HSV, EBV, CMV, VZV, HHV6, HHV8?

This thread is intended to collect information from other threads regarding which drugs are effective against the various common herpesviruses:

1. Herpes Simplex Virus (HSV)
2. Epstein-Barr Virus (EBV) (also known as mononucleosis, glandular fever, or simply "mono")
3. Cytomegalovirus (CMV)
4. Varicella-Zoster Virus (VZV) (also known as shingles, chickenpox, or herpes zoster)
5. Human Herpesvirus 6 (HHV6)
6. Human Herpesvirus 8 (HHV8) (also known as Kaposi's sarcoma-associated herpesvirus or simply KSHV)

This paper is helpful

 

[rubix]

Hello,

I have been excited about Brincindofovir for a while. I have chronic Epstein-Barr virus, and treatment options are very scarce. I have tried Valtrex in the past, and tolerated it well, but it did not improve symptoms (which for me is mainly just chronic fatigue, sometimes rather severe). Does anyone think Brincidofovir (will refer to it as BCV from here on out) will be effective at keeping Epstein-Barr Virus down? Many of us with ME/CFS have very elevated EBV titers.

My concern with Brincidofovir, other than possible side effects (which seem to mainly be stomach issues and the drug having potential carcinogenic properties) is that it seems strange that the drug is shown to be strong broad spectrum anti-viral, but seemingly hasn't been involved in may trials, even though it's been around (I think) about 10, or maybe even 20+ years? It seems like the drug company would want to trial the drug against multiple viruses as much as possible to see if it's effective and get investors interested and then go on to make hundreds of millions of dollars off their product. In other words, if BCV was infact so effective as a broad spectrum antiviral, wouldn't it be much more well-known and widely used by now? Wouldn't I be able to get it prescribed from my Doctor and have it be readily available at my pharmacy?

I am very tempted to try it for myself (if it was available to me), but I'm skeptical that it's a drug that's been around for such a long time and we still know fairly little about it. Again, if it was much better than current available antivirals on the market, wouldn't it be much more well known and distributed? If I mentioned it to my Doctor they probably wouldn't know what it is (I could be wrong).

Thanks for listening to my questions/thoughts. I'm very much looking forward to input/response on this, as I am kind of over my head on this kind of stuff.

 

[godlovesatrier]

Hey,

Even if you hit the ebv with a powerful drug like Tenofovir for example, it doesn't mean to say it will stay that way. Comorbid infections also play a role in acquired immune defiency which means that one infection may be doing more harm than another. A cluster of infections is VERY common in ME patients.

See here: https://www.frontiersin.org/articles/10.3389/fimmu.2022.949787/full

Results: At 3-6 months after mild/asymptomatic SARS-CoV-2 infection, virus-specific antibodies in saliva were substantially induced signifying a strong reactivation of latent viruses (EBV, HHV6 and HERV-K) in both cohorts. In patients with ME/CFS, antibody responses were significantly stronger, in particular EBV-encoded nuclear antigen-1 (EBNA1) IgG were elevated in patients with ME/CFS, but not in HDs. EBV-VCA IgG was also elevated at baseline prior to SARS-infection in patients compared to HDs.

So if you assume you have all six viruses in the above list strongly reactivated when A) you are acutely stressed for a long period B) you get a covid like infection, say influenza for example or covid, C) you get a vaccine (too many people to count have had herpes reactivations after the vaccines). These will all cause reactivation of the above viruses.

So knowing which viruses you have is quite important because without that knowledge you can't take the correct drugs for the viruses.

Also see this:

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciac864/6785897

A summary of this study is a series of case studies on patients two of which had asymptomatic covid. Via WGS sequencing they found that these patients often had chronic mutated forms of covid within them and that this was the cause of ongoing symptoms, even if they often never tested positive and never even felt sick in the first place. They were caught because they had chronic diseases pre covid, so that's how they became stratified.

These patients however were treated with multiple drugs. The doctors found that one patient might respond to remvesidir while other might not and would need a completely different drug. Turns out the viruses had become resistant to the drugs.

So when I say correct drug above, I don't mean taking lots of drugs due to viral resistance. I mean that even if you got the viral load down without knowing why it's high in the first place (assuming your immune system didn't return to normal oncethe infection was down, which generally speaking is the expected outcome) then there's nothing to stop it coming back.

At any rate I am not triyng to be negative, you should absolutely pursue treatment as these viruses just keep doing damage. I'm just saying that even if the drug is well tolerated on the body and it hits the virus very hard, it might still not be enough. But hopefully that may not be true.

Bottom line really is that we often need the right cocktail of drugs and antibiotics for all the infections we have and figuring this out in and of itself can be tricky to do, often needing multiple antibody and pcr panels to be 100% sure you do not have a particular pathogen. @Pyrrhus tested many antibiotics until he found one that made him feel better years ago, was pure trial and error on his part. But just goes to show how you can take an antibiotic from a doctor but if the doctor isn't willing to keep trying, that might be the end of the treatment

As for your suspicions about the drug itself and concerns, I agree with them all to be honest. A lack of safety and research is not ideal :/

 

[heapsreal]

In regards to testing, I always mention lymphocyte subset tests, mostly because I don't have access to the titre tests showing viral load etc. But even if one has access to testing viral load, getting a lymphocyte subset test can help confirm a positive or negative test by looking at the cd8 T cells. If cd8 T cells are high, this is common in herpes viruses like ebv, cmv etc. If it'd below range it may be showing immune exhaustion.

The lymphocyte subset test will also give you your nk numbers which you could also use as a guide especially if you can't get nk function test. It can also be something to measure before and during treatment with immune modulators like immunovir that should be increasing nk function and numbers.

So if your unsure your viral titres are indicating a current infection, than cd8 T cells can confirm it.

 

[godlovesatrier]

Yep I was just about to do my first test for this pre covid and then I got covid. I was so mad. So I'll never have a pre covid baseline

I decided to do a test while I was still sick with covid to see what state my body was in, I should get the results in a few days.

Then I will re-test after 2 months and see if they hae returned to normal. According to a study last month I should not expect them to return to normal - potentially ever. The study followed patients for 8 months only, at 8 months none had recovered their prior immune function.

Thanks for your notes heaps, I'll keep these for hwen I get my test results. I am quite pleased I've got this test as it will allow me to at lesat have a very good indication of how sick I am. I personally believe I'm very sick with herpes reactivations, as I am not well at the moment and taking valtrex unlike my normal reaction (I barely have any reaction) it made me very ill and most of my symptoms got much worse. However it could also be covid as I was coughing as well when treating with valtrex. Another jigsaw puzzle!

 

[SWAlexander]

Does anybody have experience with Cimetidine reg. EBV
I had this Twitter message.

 

[rubix]

Does anybody have experience with Cimetidine reg. EBV
I had this Twitter message.
View attachment 49923

Interesting, but without more info, who knows. Did the person expand on this message or what these "hints" were? I don't understand why an antacid medicine would help treat EBV, but hopefully we'll get more information.

btw thanks to everyone who has responded to this thread, very useful information.

 

[SWAlexander]

I don't understand why an antacid medicine would help treat EBV,

I wonder about it too.
Another person on Twitter is trying it at the moment. Maybe I should too.

 

[godlovesatrier]

Guys this is information we've discussed at length on PR before.

It's Dr Goldstein's treatment from the seventies. He used it on severe patients. If it helps it will work within thirty minutes. It only works for chronic ebv patients.

It's contradicted in men because it lowers testosterone levels causing suicidal depression. But women seem to tolerate it ok. I think if your a bloke you could still try it but may have some very unpleasant effects on mood.

It's a h2 blocker if anyone is wondering. Family includes pepcid tagamet and zantac. Only tagamet will work by the way!! Do not use pepcid for ebv.

 

[heapsreal]

Interesting, but without more info, who knows. Did the person expand on this message or what these "hints" were? I don't understand why an antacid medicine would help treat EBV, but hopefully we'll get more information.

btw thanks to everyone who has responded to this thread, very useful information.

I know zantac, which is used for reflux etc,it can help treat viruses particularly herpes 2 and Varicella, so should help any herpes virus. From the best of my memory it works by stopping some sort of reaction the virus makes that turns off t cells, so by use zantac and similar meds it can increase the life span of a t cell so it can fight viruses for longer. On my experience it's not a cure, but it helps especially if it feels like viruses are reactivating and your getting viral symptoms.

 

[SWAlexander]

h2 blocker

There are h2 blocker natural alternatives.
Herbal Remedies: Some people find herbal remedies such as ginger root, chamomile, slippery elm, marshmallow and licorice effective in treating heartburn.
I have tried some of these, but no real effect.
Sometimes bananas helped a little.

 

[godlovesatrier]

You can't compare tagamet and natural h2 blockers. Bioavailability and potency are amplified with drugs. That's why they are used clinically. Tagamet blocks one of ebvs protein synthesis routes (can't remember which) so while the drug is in your system that's how it works. H2 blockers don't do this...it's a secondary mode of action.

A bit like spironolactone. However I think hip is correct in that it's anti inflammatory action is what helps reduce ebv not it's antiviral action. Ebv LOVES inflamation. It absolutely loves it. If my body gets inflamed through stress ebv goes wild.

 

[rubix]

I haven't heard of anyone successfully treating EBV with antacids (though if anyone wants to share their experience I'd be glad to hear about it). I feel like if Cimetidine or ranitidine were effective at all for EBV, they would be widely used for treatment, as they are cheap medicines. Although I'm desperate so maybe I will give it a shot? Again, they are cheap, but I wouldn't expect them to make any noticeable difference, good or bad.

I did have my VCV levels checked back in March, but was never sure how to interpret them exactly, my Doctor didn't even mention them, so I assumed they were okay. I did have chicken pox as a kid, 33 years ago, so it makes sense I would have antibodies:

Varicella Zoster Virus Antibody, IgM: 0.80 (Anything under 0.90 is considered negative)
Varicella zoster Index: 7.3 (High)
Varicella zoster Antibody, IgG: Positive (Anything over 1.1 is considered positive)​

But back to Brincidofovir (I know I'm all over the place, my apologies), is anyone remaining optimistic that Brincidofovir will be a substantial, perhaps "life changing" antiviral? Will anyone maybe even try Brincidofovir for themselves? Would it be of any use asking a primary care doctor if they would prescribe it? Sounds like a massive longshot. Not sure on the current availability of BCV/Tembexa, but I would guess it's very very limited. I'm generally an optimistic person, so I am holding out hope for Brin, but like I said before, if Brincidofovir was truly a magic bullet antiviral of any kind, it seems like it would be widely used everywhere, as it's already been around for quite a while.

But I'm always keeping my ear to the ground for any sort of potential EBV or ME/CFS treament.

 

[hapl808]

There are h2 blocker natural alternatives.
Herbal Remedies: Some people find herbal remedies such as ginger root, chamomile, slippery elm, marshmallow and licorice effective in treating heartburn.
I have tried some of these, but no real effect.
Sometimes bananas helped a little.

Yeah, the alternatives are soothing, but I don't believe any work at H2 blockers. Unfortunately I've tried all of those and minimal help for reflux (maybe slippery elm was the best). As for antiviral activity, that's a separate question although some of them have some minimal efficacy I think.

 

[Mary]

Does anybody have experience with Cimetidine reg. EBV

It's Dr Goldstein's treatment from the seventies. He used it on severe patients. If it helps it will work within thirty minutes. It only works for chronic ebv patients.

It's contradicted in men because it lowers testosterone levels causing suicidal depression. But women seem to tolerate it ok.

12 years ago or so (I forget exactly how long) my doctor had me try cimetidine in an attempt to boost my immune system. He gave me an article (maybe Life Extension? I can't remember) which described how it had been beneficial in cancer treatment. I didn't have cancer but my immune system was definitely subpar. So I tried the cimetidine and within a short period of time (a few days I think) I was experiencing a very dark mood which nothing could shake. It was different than just feeling a bit gloomy. After a few days I realized I couldn't tolerate the way I felt so had to stop the cimetidine.

So I never got to find out if it could help me with EBV.

 

[godlovesatrier]

Guys we are not talking about antiacids - as I keep saying only Tagamet works. How well it works is in question I guess, but if you're severe it is 100% something you should try to see if it gives you relief.

I forgot about that @Mary but I remember your post on PR about it now. Yes seemingly it can do this in women as well as men. I have to say as a guy I wouldn't touch it but if it makes women depressed too! Then that's a bummer These things always have side effects...nightmare.

 

[BrightCandle]

Guys we are not talking about antiacids - as I keep saying only Tagamet works. How well it works is in question I guess, but if you're severe it is 100% something you should try to see if it gives you relief.

I forgot about that @Mary but I remember your post on PR about it now. Yes seemingly it can do this in women as well as men. I have to say as a guy I wouldn't touch it but if it makes women depressed too! Then that's a bummer These things always have side effects...nightmare.

Tagamat is a H2 antognist, an antihistamine. A lot of long haulers find good benefits from taking a H1 and H2 antihistamines together (Zrytec being the most popular H1 with Ketotifen recently being found to be also effective in research papers).

 

[godlovesatrier]

Sure but I'm talking about things that effect ebv protein replication. Not anti histamines that effect h1 or h2 receptors.

 

[SWAlexander]

Tagamet

According to a Google search: Tagamet was taken off the market.
The FDA said the medicines may contain "unacceptable" amounts of N-Nitrosodimethylamine (NDMA), a substance the World Health Organization has classified as a "probable human carcinogen."
In Germany Cimetidine was also taken off the market.
I still will try Cimetidine if I can find it. Just for a short time to see if it makes a difference.