Dr Chia finds 2% of ME/CFS cases are due to varicella zoster virus reactivation (shingles), and this form of ME/CFS is very treatable

[Hip]

But I’ve since shown those photos to others doctors that said it’s possible.

If your ME/CFS were due to VZV, according to the video interview with Dr Chia (see 1st post), you would experience a dramatic improvement in a few of weeks on acyclovir. So if you can find a doctor willing to prescribe a short course of acyclovir, that might be the easiest way to test for VZV ME/CFS.

 

[EddieB]

. So if you can find a doctor willing to prescribe a short course of acyclovir, that might be the easiest way to test for VZV ME/CFS.

Yes, I have a script for valcyclovir I have not tried yet. I’ve been reading your many postings on this, thank you!

 

[Hip]

Yes, I have a script for valcyclovir I have not tried yet. I’ve been reading your many postings on this, thank you!

I've yet to come across someone on this forum who had a miraculous recovery from ME/CFS simply because their illness was due to VZV, and acyclovir thus fixed it in a matter of weeks. But Dr Chia says he does come across such cases, so that's why I started this thread, to make people aware of this very treatable form of ME/CFS.

 

[EddieB]

I've yet to come across someone on this forum who had a miraculous recovery

I know, highly unlikely. But I’ve been considering trying antivirals anyhow, as nothing else is helping, just another reason. I have high EBV IgG and decreased left ventricle function (Dr Lerner), so I may see benefits.

 

[EddieB]

I was researching drug interactions between valcyclovir and dexilant (ppi) that I currently take. Found this study...

Omeprazole Increases the Efficacy of Acyclovir Against Herpes Simplex Virus Type 1 and 2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6901432/

 

[heapsreal]

I cant believe this is the first time ive seen this thread, interesting.
One thing to consider is the disease mollarettes meningitis, which is reoccurring chronic shingles and its mentioned in a few places shingles without a visible rash or an internal rash. Its usually diagnosed with a lumbar puncture and some people have had several episodes of mollarettes before vzv is found in spinal fluid, so it can be hard to get a diagnosis for it. Treatment is the same ie antivirals but seems if in hospital they will use IV acyclovir.

When researching mollarettes, it seems very similar to cfsme, maybe it is the same thing but a different name??

 

[EddieB]

Related article,
https://www.sciencedirect.com/science/article/pii/S0306987709003065

 

[EddieB]

One of my constant annoying symptoms, I go through periods of breakouts in sores that look and act very much like an insect bite. An itchy bump will form, break open with clear fluid, then scab over. It will last for several days to weeks, healing slowly and leaving a brown spot long after.

I was reading up on VZV, and came across this...
About 15% – 20% of people who have received one dose of varicella (chickenpox) vaccine do still get chickenpox if they are exposed, but their disease is usually mild. Vaccinated persons who get chickenpox generally have fewer than 50 spots or bumps, which may resemble bug bites more than typical, fluid-filled chickenpox blisters.

I’ve been comparing these sores to histamine, shingles, etc, but they sound a lot like what’s being described above here. And I hadn’t thought about it till now, but if I remember correctly, when I had the chicken pox as a kid, the sores left brown spots that lasted a long, long time afterwards.

Any thoughts? Or is this connection I’m making even possible? I have not had a shingles vaccine.

 

[Mrparadise]

I had chickenpox as a child and I never had any visible blisters recently but when I did a specific testing (see attached picture) the value for HHV-3 (VZV) is extremely high. I asked my doctor if I could try some antivirals but he said two things: 1) As my liver values are not optimal its probably too risky and 2) he is only referring to dr. lerner's work/studies in any CFS treatment approach regarding viruses (so he is not listening to me when I told him that Dr. Chia thinks thats 3 weeks could be enough).

I would be highly interested on your thoughts about this (no visible blisters but having high lab results which the labratory thinks points towards reactivation).

What would you do? Order it myself? Is an oral administration even gonna work as good as IV?

Many thanks in advance!

@Hip (sorry for the @ but your opinion would mean a lot to me)

PS: the labratory results are German (sorry for that)

 

[Hip]

I would be highly interested on your thoughts about this (no visible blisters but having high lab results which the labratory thinks points towards reactivation).

My understanding is that active VZV diagnosis is done visually, noting the appearance of blisters, not by antibody levels.

If you look at table 1 in this paper by Chia, you see that he diagnoses active VZV by the appearance of lesions, not by antibody tests.

 

[EddieB]

I have not been able to get doctors to test me for VZV for the same reason, they say the results can’t determine an active infection. Maybe your test is different if the lab considered it active?

I sent this photo along with a stomach biopsy to Dr Chia to comment, but can’t seem to get to him...

 

[Mrparadise]

But what I do not understand is why the T-cell-activity is that high and there are no visible signs for that... Could it be that the virus only targets a specific area? The lab states at the end of the document that a reactivation cant be excluded regarding these values (but they are also saying that one has to interpret this results with the serological findings and the cinical picture of the patient in mind). In the end as in my case it affects VZV why not just try antivirals for 1 month? Sure my liver values are a bit off but I guess I will survive it..

 

[Hip]

But what I do not understand is why the T-cell-activity is that high and there are no visible signs for that

Are your test results measuring T-cell activity, rather than antibody levels? I have never seen T-cell activity tests before.

 

[Pyrrhus]

In the end as in my case it affects VZV why not just try antivirals for 1 month? Sure my liver values are a bit off but I guess I will survive it..

I don't know which antiviral your doctor was talking about, but the standard treatment for VZV involves valacyclovir (3-4g/day) and I haven't heard about any liver issues with valacyclovir. (Of course, there may be interactions with other medications that might impact the liver, though.)

 

[Mrparadise]

@Hip Yea, as far as I understand it, its exactly that.

@Pyrrhus Actually I dont know about liver damage either but ity adviced to control liver parameters while on antivirals.

 

[Pyrrhus]

Actually I dont know about liver damage either but ity adviced to control liver parameters while on antivirals.

It depends upon the particular medicine. Each antiviral medicine is completely different from each other in terms of pharmacology. Some require close monitoring of liver enzymes and some are barely even metabolized by the liver at all. Unfortunately, I find that generalizations about "antivirals" too often tend to be misleading and unhelpful.

 

[gbells]

So it is worth considering whether you have this rarer form of VZV ME/CFS, just because a short course of antivirals can be curative for varicella zoster ME/CFS.

Did Dr. Chia ever publish any long term follow up on these HZ acyclovir cured-people? Perhaps they just improved and later relapsed? I had chickenpox in childhood, recovered with no ME, developed ME at 38 and had a shingles flare at 46, was treated with acyclovir which successfully prevented it from progressing but it had zero effect on my ME symptoms. That said, I also am positive for my other ME viruses.

 

[Hip]

Did Dr. Chia ever publish any long term follow up on these HZ acyclovir cured-people? Perhaps they just improved and later relapsed?

Not that I am aware of, and I have not come across any cases on this forum, although that may be down to lack of awareness (Chia found that even one or two tiny shingles blisters can signify VZV activation, but I bet many ME/CFS patients do not know that).

 

[Mrparadise]

@Pyrrhus Do you know an anziviral which is not metabolized by the liver and is generally not too much of a burden for the body + is effective against HHV3/VZV?

 

[Pyrrhus]

@Pyrrhus Do you know an anziviral which is not metabolized by the liver and is generally not too much of a burden for the body + is effective against HHV3/VZV?

The drug valacyclovir (Valtrex) is often prescribed for VZV and is generally seen to be effective and have a very low incidence of adverse events. It is taken by mouth, converted to acyclovir in the intestines/liver, and then released into the blood. Once in the blood, the acyclovir suppresses the virus and is eventually excreted in urine and feces, mostly unmetabolized.

So the liver does some metabolism during the conversion of valacyclovir to acyclovir, but after that there doesn't seem to be much liver metabolism:

After oral administration, valacyclovir hydrochloride is rapidly absorbed from the gastrointestinal tract and nearly completely converted to acyclovir and L-valine by first-pass intestinal and/or hepatic metabolism.
[...]
After oral administration of a single 1 gram dose of radiolabeled valacyclovir to 4 healthy subjects, 46% and 47% of administered radioactivity was measured in urine and feces, respectively, over 96 hours. Acyclovir accounted for 89% of the radioactivity excreted in the urine [FDA label].

Source: https://pubchem.ncbi.nlm.nih.gov/compound/Valacyclovir#section=Absorption-Distribution-and-Excretion

For people with liver problems, the official prescribing information from the U.S. Food and Drug Administration has this to say:

Patients with Hepatic Impairment:
Administration of VALTREX to subjects with moderate (biopsy-proven cirrhosis) or severe (with and without ascites and biopsy-proven cirrhosis) liver disease indicated that the rate but not the extent of conversion of valacyclovir to acyclovir is reduced, and the acyclovir half-life is not affected. Dosage modification is not recommended for patients with cirrhosis.

Source: https://www.accessdata.fda.gov/drugsatfda_docs/label/2019/020487s020lbl.pdf

What does this mean? This means that if you have liver problems, the drug might be absorbed into the blood more slowly due to the liver disease, but it will not be excreted from the body more slowly, indicating that the liver does not appear to have problems excreting the drug from the body.

In my personal case, I found that the standard dosage for shingles, which is 1g valacyclovir 3 times per day, reduced my shingles rashes to small pinpoint red spots. Only when I increased the dose to 1g valacyclovir 4 times per day did the shingles rashes disappear completely. (I don't have liver problems)

Your doctor will probably recommend that you take it with water or other liquids. Your doctor will probably also recommend that you space your doses throughout the day, since acyclovir has a short half-life.

Hope this helps.