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

[Mrparadise]

Many thanks for the detailed response @Pyrrhus - highly appreciated. I will talk to my doctor again and hope that I can try it for 3-4 weeks. I am still not sure if its worth it because I do not have visible blister but maybe I can help the community (and myself) if I do improve on it only because of the elevated T-cell acitivy against the virus. I guess its worth a try especially if the risk for serious complications is kinda low.

 

[Keeping the Faith]

It has been hypothesized that varicella zoster virus (VZV) reactivation in the peripheral nerve ganglia may cause ME/CFS.

Dr John Chia finds that around 2% of ME/CFS cases may be due to reactivation of the varicella zoster virus in the dorsal root ganglia.

From Dr Chia's experience, ME/CFS due to varicella zoster virus reactivation appears easy to treat: it responds very quickly (in a matter of weeks) to antivirals such as acyclovir or Valtrex.

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.

I wonder if anyone can offer me some advice on this. I had Shingles a number of years ago and it kicked off the CFS. The fatigue was intermittent for a couple of years then constant from 1 year ago. Having read the posts about Shingles on here I wonder if I should try anti virals. However, I can't figure out if Dr Chia and others are recommending them if you have Shingles after the onset of CFS.

If anyone has any experience with this please let me know as I'd love to give it a go but am concerned about becoming my own doctor and the risks therein.

I also need to know how long an effective treatment needs to be in a case like mine.

I'm due to see a consultant in 3 months and he may help with this but I'm not sure I can wait.

Thanks

 

[Hip]

I had Shingles a number of years ago and it kicked off the CFS.

Varicella zoster virus reactivation in the form of shingles can occur in the first few months of catching an enterovirus (and enterovirus can trigger ME/CFS). This reactivation is due to the temporary immune weakening caused by the enterovirus infection. Dr Chia published a paper on this. See the first post in this thread for more details.

My guess is that if you do not have an ongoing shingles rash, then it's not the sort of VZV ME/CFS that Dr Chia treats with acyclovir. You could try taking acyclovir for a few weeks if you like though, as in the case of VZV ME/CFS, it only takes a few weeks treatment to cure, it seems.

Did you have any sort of acute infectious epsiode just before you got shingles? Like a sore throat, gastrointestinal upset, or flu-like illness? If so, then the fact that you got shingles afterwards provides a clue that you may have caught an enterovirus, a virus linked to ME/CFS.

In the UK, we do not have sensitive enough tests to detect the chronic enterovirus infections found in ME/CFS patients. But these tests (called antibody neutralization tests) are available in Europe and the US. See the enterovirus section of my roadmap document for labs which can test for chronic enterovirus.

 

[Keeping the Faith]

Thanks for your reply. As far as I can remember, I didn't have any acute infectious illness before Shingles. It really seemed to come out of nowhere.

Even though the rash left a long time ago and hasn't returned, I wondered if the Varicella Zoster virus might be being constantly reactived and causing/contributing to the fatigue. It's a long shot I know but a course of Acyclovir might be worth a try.

 

[ChookityPop]

What is the best test for VZV?

 

[Hip]

What is the best test for VZV?

VZV reactivation is diagnosed by visual inspection of the skin. See the first post. Lab tests are not as accurate as visual inspection.

 

[Martin aka paused||M.E.]

VZV reactivation is diagnosed by visual inspection of the skin. See the first post. Lab tests are not as accurate as visual inspection.

So would you say that if IgG rises anove 2000 but you don't have shingles it's meaningless? Because I can't sort it out if this was a reactivation when I became bedridden or a meaningless high titer.

 

[Hip]

So would you say that if IgG rises anove 2000 but you don't have shingles it's meaningless? Because I can't sort it out if this was a reactivation when I became bedridden or a meaningless high titer.

From what I understand from reading various sources, high VZV IgG in an antibody test does not tell you much about the state of VZV in your body, and whether this virus has become reactivated in the dorsal root ganglia (its normal home).

It is only the appearance of shingles blisters that is a good indication of reactivation (even if it is only one or two tiny blisters). I don't know why antibody tests are not a good guide for VZV reactivation, because I could not find info on that.

But if you find any more information on this, or information to the contrary, please let me know, because I found it hard to find information on this subject.


I mention the story in the first post of Dr Chia's severe ME/CFS patient, who he had been seeing for nearly a year. It was only when he noticed just two tiny shingles blisters on her skin that he was alerted to VZV reactivation. Presumably if there were a blood test that was a reliable way to test for VZV reactivation, Dr Chia would have already given that test.

So when he found these two tiny shingles blisters, he have the patient some regular acyclovir, and within weeks she was back to full time work.

For me, the extraordinary thing about these rare cases of VZV-associated ME/CFS is the speed in which recovery occurs after being given antivirals. When we compare to EBV, CMV or HHV-6 virus-associated ME/CFS, Dr Lerner found improvements in symptoms from antiviral therapy take a year or more to fully manifest, and usually the patient does not recovery, but just gets a bit better.

My interpretation is that VZV ME/CFS may be due to a classical acute/reactivated viral infection, which antivirals are good at quickly addressing.

Whereas ME/CFS linked to EBV, CMV or HHV-6 may involve unusual forms of infection, such as the abortive infections that Dr Lerner proposed were driving ME/CFS, which do not respond directly to antivirals. Lerner says antivirals only work for abortive infections by indirect methods (addressing any reactivated infection which co-exists with the abortive infection).

 

[Martin aka paused||M.E.]

But if you find any more information on this, or information to the contrary, please let me know, because I found it hard to find information on this subject.

I don't have a source but the only thing I could think of is cross-reactivity. That's in general a problem with antibody-tests I think.

 

[ChookityPop]

VZV reactivation is diagnosed by visual inspection of the skin. See the first post. Lab tests are not as accurate as visual inspection.

I had a painful rash last year which lasted between 2-3 weeks. It was also located at the thoracic nerve T12 (lower abdomen). I never developed any blisters as far as I remember. Here is a post I made about it Painful rash.

I haven't had any rashes before or since. If that was VZV reactivation that caused the rash could I have persistent ongoing infection? Or is it nothing to worry about since I haven't had any new rashes? I can add that I am positive for VZV and my mother struggled with shingles for years and years. I also had pain in the area quite a while afterwards.

 

[Hip]

I had a painful rash last year which lasted between 2-3 weeks. It was also located at the thoracic nerve T12 (lower abdomen). I never developed any blisters as far as I remember. Here is a post I made about it Painful rash.

I don't know much about rashes, you would have to consult a doctor. Shingles rashes usually contain tiny blisters.

If you wanted to try a few week's course of acyclovir speculatively, that is something you could also ask your doctor about.

 

[TiredBill]

I did have shingles about 25 years after contracting ME/CFS. It was the most excruciatingly painful thing I've ever experienced, and I discovered the cause too late to take antiviral medications, to my regret.

I can't say that shingles--as awful as it was--set off any noticeable change in my expression of ME/CFS.

Bill

 

[Hip]

I can't say that shingles--as awful as it was--set off any noticeable change in my expression of ME/CFS.

Have you at any stage tried acyclovir, Valtrex or Famvir?

Dr Chia's findings suggest a very small percentage of ME/CFS patients may have their illness caused by ongoing VZV activation, and these cases are very treatable with antivirals.

There may be people on this forum whose ME/CFS is due to VZV, but they do not know it; yet they might be able to achieve full remission within weeks on acyclovir.

 

[TiredBill]

Have you at any stage tried acyclovir, Valtrex or Famvir?

Dr Chia's findings suggest a very small percentage of ME/CFS patients may have their illness caused by ongoing VZV activation, and these cases are very treatable with antivirals.

There may be people on this forum whose ME/CFS is due to VZV, but they do not know it; yet they might be able to achieve full remission within weeks on acyclovir.

I have not. Were I able to turn back time I certainly would have clamored for antivirals immediately upon the outbreak of shingles. I did not recognize what was happening until it was too late--and I paid a considerable price in terms of pain for that mistake. Pure torture.

My plans to get a shingles vaccine have been upset by this pandemic. Not sure what to make of a 2% claim of remission of ME/CFS by taking acyclovir or other antivirals. I would take them in a heartbeat should I have another bout of shingles before I get the vaccine--and pray that does not happen.

Shingles took me to my knees and I'm someone who always prided myself on having an exceptionally high pain threshold. Having shingles was humbling.

Bill

 

[nerd]

I wonder if keto rash is actually shingles reactivation.

 

[borko2100]

I wonder if keto rash is actually shingles reactivation.

Interesting theory. I also get the keto rash when doing keto or fasting. Do others around here get it too?

 

[nerd]

Interesting theory. I also get the keto rash when doing keto or fasting. Do others around here get it too?

Even the places where I get it would be consistent with zoster reactivation. Some research attributed this rash to the findings of acetone-feeding bacteria but these might just be correlative because the inflammated skin provides the best breeding ground while being fed acetone from the ketogenesis.

I've had no success whatsoever with topical antibiotics. It appears and disappears randomly without any obvious trigger. It doesn't look like typical shingles but when is reactivated zoster typical?

If visual inspection is supposed to be the best verification, I don't know how we're supposed to verify it because ketosis changes the rules.

 

[Martin aka paused||M.E.]

It doesn't look like typical shingles

Then maybe it's not shingles at all?

In 2016 after a trip to Cuba I got heavy rashes all over my body. It was pretty bad and combined with acne and folliculitis. Of course, the dermatologist gave me a cortisone +antibiotic topic treatment and no further testing.

I found out that the outbreaks were controllable with deep self-hypnosis. But the outbreaks themselves were not triggered by stressful events. Deep hypnosis (I'm professionally trained in that by a hypnotist who studied under Milton Erickson) can reduce inflammation (tons of research - it's the same effect like deep meditation plus affirmation/suggeations; I think it is more effective than meditation). I confirmed that later when I had a epididymitis. It sounds like oath, but I cured it with self-hypnosis alone.

Two years later I found very high IgG of VZV when I became bedridden. No skin rashes that I would have been aware of (though shingles - as @Hip mentioned with the “Chia-example” can be hard to find to an uneducated eye)
I don't know if there is a connection, and if I had even higher titers back in 2016?!

But - dealing with skin diseases since puberty - I know skin rashes can have multiple reasons and if it doesn't look like shingles, than maybe it isn't.

Furthermore there are skin conditions that can look a bit like shingles for examples psoriasis pustulosis...

A rheumatologist told me back in 2016 that if you have an autoimmune disease like psoriasis or any other type of AI you're prone to systemic inflammation in all of your tissue and joints. So maybe you triggered sth completely else.

Just a thought
Not backed with research affords.

 

[Hip]

I'm professionally trained in that by a hypnotist who studied under Milton Erickson

That must have been very interesting training you received.

Years ago, I used to have an academic reading interest in hypnotism (always been fascinated by the mind and exotic mental states like hypnotism and meditative states). I was highly impressed by Milton Erickson's extraordinary and unorthodox abilities to place people into hypnotic trance.

I stopped reading books since getting ME/CFS, though, as unfortunately brain fog does not allow me to enjoy or penetrate academic subjects.

 

[nerd]

Furthermore there are skin conditions that can look a bit like shingles for examples psoriasis pustulosis...

A rheumatologist told me back in 2016 that if you have an autoimmune disease like psoriasis or any other type of AI you're prone to systemic inflammation in all of your tissue and joints. So maybe you triggered sth completely else.

I've had psoriasis at some point, but only a very small area of one foot. I'm highly susceptible to rheumatic conditions such as psoriasis by multiple HLA-B27 alleles. But this rash looked completely different.

The shingles rash itself without herpes also doesn't look the same as the one with co-infection. Bacterial rashes aren't uncommon either with shingles. It's not always an opportunistic herpes co-infection. Typically for shingles would be the first painful burning and then itchy hives. So far, this is completely consistent with my own experience. But instead of herpes blisters, I developed numb papules.

None of this contradicts shingles, papules can happen with shingles as well. If you google "keto rash" and look at all the different manifestations of the keto rash, I can't say that there's any difference to some of the shingles pictures I found.

My theory is that the reactivation itself might be the same, but unlike normal shingles, where herpes viruses play a greater role for the manifestation of the later symptoms, it might be acetone bacteria in the case of the keto rash. These might just be different profiteers from VZV. As I've explained in other posts, ketones increase the risk of viral reactivations. This would also be consistent.

I don't think anyone has ever researched the keto rash well enough to tell if the bacteria can cause such issues on healthy skin. Why is it limited to these shingles-typical places and doesn't typically occur on extremities, just as shingles doesn't typically occur there? Also, it always recurs in the same regions. If it was bacterial, wouldn't it spread to any place, wouldn't you be able to reinfect your skin by scratching somewhere else and getting it there? Instead, it recurs simultaneously at multiple places of the body.

Maybe if I do more research, I can find cases where it spread to other people on keto. These would have to be vaccinated or otherwise immunized of course so that it's not an initial chickenpox infection. If it spreads, this would be inconsistent and a sign that I'm confusing this.