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

Senior Member
Messages
12,778
Likes
23,516
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.



VZV is the virus which causes chicken pox, but after you have had this illness (usually as a child), for the rest of your life the virus remains in the dorsal root ganglia along the spine, normally in a latent state.

If VZV reactivates, it often causes a shingles rash on the body skin. Indeed, varicella zoster virus reactivation is usually medically diagnosed just by observing the distinctive shingles rash on the skin, rather than through viral blood tests. (If you do want to double-check, PCR testing of the shingles blister contents is the most reliable way to confirm VZV reactivation).

So if as an ME/CFS patient you have had a shingles rash, this indicates VZV reactivation, and it suggests your ME/CFS might be due to VZV. Even just a few tiny little shingles blisters are enough to signify a VZV reactivation.

In this video at 6:58 Dr Chia tells the story of a high flying executive who became bedridden with severe ME/CFS. After 11 months in this bedridden state, Dr Chia noticed two tiny little shingles blisters appearing on this patient, and thus suspected VZV reactivation-caused ME/CFS. Dr Chia gave her some acyclovir to take daily, and within 3 weeks she was back to full-time work. That's how quickly VZV ME/CFS responds to antivirals.



The medical name for shingles is herpes zoster, and the rash looks like this:

Shingles Rash (Herpes Zoster)
1554496690623.png

More examples of shingles rashes are shown HERE.

A shingles rash only appears on one side of the body, left or right, and will be confined to a strip or a small area. The most common locations for the shingles rash are shown below:

Most Common Locations for a Shingles Rash
Shingles rash common locations.jpg

So if after developing ME/CFS you have had a rash that looks like shingles, especially in the locations indicated, then your ME/CFS might be due to VZV.



Note that enterovirus infections in their first two months have been shown to cause transient immunosuppression which can temporarily reactivate VZV. Ref: 1 Enterovirus is also one of the main viruses linked to ME/CFS.

So if you develop shingles in the first two months after contracting an enterovirus — an enterovirus which may have triggered your ME/CFS (enterovirus can initially cause a gastrointestinal or flu-like illness, or herpangina sore throat) — the shingles may just be due to this temporary immune weakening.

If your shingles rash was the result of catching an enterovirus, I imagine your ME/CFS is more likely to be due to enterovirus (which unfortunately is much less treatable) than VZV.
 
Last edited:
Messages
1,851
Likes
5,111
So if you develop shingles in the first two months after contracting an enterovirus
So: how does one obtain this antiviral? How do we get access to some of these types of treatments?

I don't expect you to answer yet I seem to not ever find the answer.
 
Messages
1,851
Likes
5,111
So if you develop shingles in the first two months after contracting an enterovirus
for what its worth: personally experienced a neurological event in which two teeth nerves were killed. Doctors could not explain it. I explained it to myself: it was some kind of shingles event. That killed my teeth six weeks after giving birth and the massive physical stressors therein. No rashes were involved. I am convinced that its possible for this critter to: not produce an evident rash. I am also more convinced this may account for very odd surficial sensitivity I experience in the surface of my spine/skin, especially during acute episodes..
 

Wolfcub

Moderator
Messages
2,854
Likes
7,103
Location
SW UK
I had shingles twice in the year 2000. Apart from the lack of respiratory symptoms it felt like a double dose of flu, plus rash of course.
I healed nicely with no post-herpetic pain, and it hasn't come back since then....but I wondered about it as last year VZV did cross my mind when I felt like I'd got flu but minus respiratory symptoms. But there was no sign of a rash or even a single blister anywhere.
I blasted it for weeks with a concoction of herbal anti-virals....convinced it had to be a virus. A concoction that had in the past, cured me of some pretty sturdy stuff....but it all had no curative effect.

For one year I've had a slight twingey nagging pain above right eye and recurrent "coming down with flu" symptoms (noticeable mostly in "crashes")...a mystery to the neurologist and no pathology on a CT.

I would experiment with a pharmaceutical anti-viral but I do respond rather badly to things like that...i.e. they make me dreadfully ill whereas herbs don't.
 

Sidny

Senior Member
Messages
176
Likes
412
Doctor Chias findings in regard to VZV are interesting, I wonder if he finds EBV or HSV play a role as well and if so whether or not antivirals maybe equally helpful in those cases.

Does anyone believe HSV features in ME/CFS? Either as a primary infection or reactivation? I know of 5 individuals on this forum who have good reason to suspect a primary HSV infection triggered their illness one of which was Shawn (rest in peace) aka SK2018.

I believe it might be overlooked as it’s one of the more stigmatized HHVs
 

Hip

Senior Member
Messages
12,778
Likes
23,516
how does one obtain this antiviral?
Your doctor should be able to prescribe it. Or else you can buy acyclovir, Valtrex or Famvir (all three work against VZV) at one of the reliable prescription-free pharmacies listed in this post.

Valtrex (valacyclovir) is the prodrug of acyclovir, meaning that it converts into acyclovir in the body. Famvir (famciclovir) is a different drug, which is often better tolerated than Valtrex, but is more expensive.

Unlike the antiviral treatment of ME/CFS linked to EBV, cytomegalovirus and HHV-6, which takes up to 1 or 2 years to get the full benefit, the antiviral treatment of ME/CFS linked to VZV is very fast, with the full benefits appearing in just 2 weeks or so. Thus if you have VZV ME/CFS, you do not need to be on these antivirals for a long time.



Doctor Chias findings in regard to VZV are interesting, I wonder if he finds EBV or HSV play a role as well and if so whether or not antivirals maybe equally helpful in those cases.
According to Dr Chia's letter on the probable causes of ME/CFS in his patients, he does consider EBV, cytomegalovirus, HHV-6, parvovirus B19 and Chlamydia pneumoniae to be possible causes of ME/CFS. Of course Dr Chia specializes in enterovirus-associated ME/CFS, so he considers enteroviruses (coxsackievirus B and echovirus) to be the most important cause of ME/CFS.

Dr William Pridgen considers herpes simplex virus to be a possible cause of fibromyalgia, and the Pridgen antiviral protocol which targets HSV has successful passed phase II clinical trials as an effective treatment for fibromyalgia. However, I have not seen any evidence that HSV can cause ME/CFS, though it's not beyond the bounds of possibility (and I believe Pridgen has also been trying his protocol on ME/CFS patients).



I would experiment with a pharmaceutical anti-viral but I do respond rather badly to things like that...i.e. they make me dreadfully ill whereas herbs don't.
Having tried many dozens of all sorts of different pharmaceutical drugs (which I mostly bought from prescription-free pharmacies online), I have found that with some drugs my symptoms may be worsened (which means I usually have to stop the drug), whereas with other drugs I experience no such adverse effects. So each drug is individual.
 

Hip

Senior Member
Messages
12,778
Likes
23,516
So it's a case of some being given the wrong diagnosis then. Seems to happen fairly often, particularly in the UK.
In these varicella zoster virus reactivation cases, the diagnosis of ME/CFS is probably correct, it's just that this form of ME/CFS responds very rapidly to antivirals.

Antivirals are pretty effective a treating regular viral infections, such as VZV reactivation.

But standard antivirals are not good at treating the unusual type of infections found in ME/CFS, such as non-cytolytic enterovirus infections, or in Dr Lerner's theory of ME/CFS, abortive herpesvirus infections. So this is most likely why antivirals typically take several months or years to work for most ME/CFS patients — because standard antiviral are not good a clearing these sort of infections.

But when you get ME/CFS being caused by a regular type of viral infection, as in this VZV reactivation case, then antivirals work quickly and effectively.



I think these cases of VZV ME/CFS are interesting, because they suggest if we had the right antivirals to treat the unusual enterovirus and herpesvirus infections found in most cases of ME/CFS, this disease would be treatable, and probably curable in many cases, in a matter of a few weeks of antiviral treatment.

Unfortunately this treatable VZV ME/CFS is not common. In the video I linked to earlier, Dr Chia says he sees about 50 cases of VZV ME/CFS in every 3000 ME/CFS patients (1.7%).

And in this published letter from Dr Chia, he found VZV ME/CFS in 6 out of 200 patients (3%).
 
Last edited:
Messages
1,851
Likes
5,111
Unfortunately this treatable VZV ME/CFS is not common.
Thank you this is very helpful. I have the EBV chronic version; but I may also have the VZV as well. So I would need the long term antivirals most likely. And I think I definately am harboring something living in the intestines like Norovirus.
 

Mary

Moderator
Messages
7,705
Likes
15,839
Location
Southern California
@Hip - this is very interesting. In September 2015 I tested positive for varicella zoster virus antibody (IGG). The reference range was < or = 0.90, and my result was 2.83. But I never had any symptoms, to my knowledge. I've known people who had shingles and it's supposed to very painful.

But - I just realized I've had a small patch of skin on my right eyebrow which itches, it's been there for several years, I've just thought it was a mild form of psoriasis or something, nothing to get excited about. Though several years ago it was worse - larger and red and inflamed, but in my constellation of symptoms it was nothing so I ignored it. And on my right side I've had a small area that also itched - again, nothing to get excited about.

Now I'm wondering if it might be some form of shingles without pain, if that's even possible. Both spots are small, but both are on the right side and within the areas you noted. Any ideas? Maybe worth a look into!
 

Wolfcub

Moderator
Messages
2,854
Likes
7,103
Location
SW UK
Having tried many dozens of all sorts of different pharmaceutical drugs (which I mostly bought from prescription-free pharmacies online), I have found that with some drugs my symptoms may be worsened (which means I usually have to stop the drug), whereas with other drugs I experience no such adverse effects. So each drug is individual.
Yes of course. I am very hyper-sensitive to some drugs whereas others, I tolerate quite well. Most antibiotics unfortunately have a terrible serious effect on me, and that makes me unsure of trying an anti-viral.
But sure -antibiotics and anti-virals are completely different medicines so a little bravery on my part would come in handy !

Once I was prescribed a short course of steroids and felt good! And many pain killers I can handle. But even a single antibiotic tablet had a terrible effect on my whole system, and my heart rhythm. The doctor thought I was allergic to penicillin but that turned out not to be the case, as there was a single one I could just barely tolerate. Amoxycillin made me feel unwell but it was bearable for 5 days.
His experimenting with a nonpenicillin antibiotic had just as bad an effect.

I was like that before the CFS so not sure at all how it would be now.
 

Hip

Senior Member
Messages
12,778
Likes
23,516
In September 2015 I tested positive for varicella zoster virus antibody (IGG). The reference range was < or = 0.90, and my result was 2.83. But I never had any symptoms, to my knowledge. I've known people who had shingles and it's supposed to very painful.
I don't fully understand it, but I believe that antibody blood tests are not very sensitive for detecting VZV reactivation. My understanding is that VZV reactivation is usually diagnosed by visual observation of the shingles rash, rather than blood tests.

In the above story of Dr Chia's patient, Chia only figured out this patient had VZV reactivation once two tiny shingles blisters appeared. If it were possible to accurately detect VZV reactivation by blood test, I am sure Dr Chia would have included an VZV antibody test in his battery of viral tests on the patient.

I've seen various patients on this forum post up the list of blood tests given to them by various ME/CFS doctors, including Dr Chia, Prof Montoya, Dr Kenny De Meirleir and Gordon Medical, and in none of these lists was a VZV blood test ordered. So blood tests for reactivated VZV I presume are not that much use, at least in the ME/CFS context. Thus VZV is unique among the ME/CFS viruses, being the only one which is diagnosed by observation alone.

In the CDC recommendations for diagnosing VZV reactivation by lab tests, it says that if two separate blood serum samples are taken some time apart — at the acute stage and then later at the convalescent stage of shingles — and these show a four-fold rise in IgG antibodies, then that you can reliably use that to diagnose VZV reactivation.

However, that diagnosis requires two acute and convalescent blood samples to be taken. A single IgG blood test, as far as I can work out, does not tell you much regarding whether your VZV may have reactivated.


In any case, when ME/CFS doctors talk about high IgG antibody levels, these are levels many times higher than the reference range for negative stated by the lab. In your VZV IgG test, your reference range for negative is ≤0.90, and your IgG result was 2.83, so you are only about 3 times higher than the reference. I don't know if it is anything to go by, but in Dr Chia's enterovirus tests, he considers high IgG to be at least 16 times the reference range for negative. So by those standard, your IgG levels for VZV do not look high.

In my own test for varicella zoster virus IgG, my result was 1395 mIU/ml, and the reference for negative was ≤160. So my IgG is around 8 times higher than the reference — that's still not high.

Have you ever in the past taken any herpesvirus antiviral for at least a few weeks — antivirals like acyclovir, Valtrex, Famvir or Valcyte? If so, that would have dealt with any VZV reactivation you may have that might be causing your ME/CFS. If anyone has taken such antivirals since developing ME/CFS, I think that probably rules out the possibility they have VZV ME/CFS (at least at that point in their disease history).


But if Dr Chia's statistics are right, and 2% of ME/CFS cases are indeed due to varicella zoster virus, then there could be dozens of forum members here who might have VZV ME/CFS, which could be easily treated and their symptoms greatly improved with simple and inexpensive antivirals like acyclovir.
 
Last edited:

Mary

Moderator
Messages
7,705
Likes
15,839
Location
Southern California
Have you ever in the past taken any herpesvirus antiviral for at least a few weeks — antivirals like acyclovir, Valtrex, Famvir or Valcyte?
No, I haven't. Okay, it sounds like from my numbers it's doubtful that I have an active varicella zoster virus infection and that the two spots I have of sensitive itchy skin in the same areas as in your chart are not significant. Though I know of course this is not a definitive answer. I'd never thought much about them until I saw the chart and wondered if there was a connection. Another mystery of this DD! :sluggish:

Thanks for your analysis and all the information @Hip! :thumbsup:
 

Hip

Senior Member
Messages
12,778
Likes
23,516
I found acyclovir pills on ebay, not sure if that is safe to buy...
I think acyclovir is a prescription drug everywhere, so you would not normally expect to find it on eBay (except acyclovir cream for topical use, which you can buy over the counter). Thus whether those pills contain acyclovir I would not like to say.
 

tiredowl

Senior Member
Messages
156
Likes
136
Location
Norway
I think acyclovir is a prescription drug everywhere, so you would not normally expect to find it on eBay (except acyclovir cream for topical use, which you can buy over the counter). Thus whether those pills contain acyclovir I would not like to say.
Sometimes people sell prescription meds because it might not be prescription in their countries, I think?
So thats why you can sometimes find medications there. I found cimetidine which I think is prescription here.

But yeah, it's probably not a good idea to buy it... Don't know what is in it.. and most seem to only contain 10 tablets which probably isn't enough to cure Variella Zoster virus..
 

Hip

Senior Member
Messages
12,778
Likes
23,516
@Hip do you know what the acyclovir dosage is?
I don't know the acyclovir doses used by Dr Chia to treat varicella zoster virus ME/CFS (where the patient has a shingles rash), but perhaps they may be similar to the acyclovir doses used to treat shingles (herpes zoster), which this article says is:
[Acyclovir] 800 mg orally every 4 hours 5 times a day for 7 to 10 days
This study found that for treating shingles, Valtrex 1,000 mg three times daily is equivalent to acyclovir 800 mg five times daily.

Valtrex (valaciclovir) is the pro-drug of acyclovir (it converts into acyclovir in the body).
 
Last edited:

Pyrrhus

Senior Member
Messages
185
Likes
530
Location
U.S., Earth
found that for treating shingles, Valtrex 1,000 mg three times daily is equivalent to acyclovir 800 mg five times daily.
I went through a period a couple of years back where I experienced recurring episodes of shingles.

When I took the standard dosage for shingles (Valtrex 1gm 3x/day) it reduced the shingles rashes to tiny blisters.

When I upped the dose to (Valtrex 1gm 4x/day) it completely eliminated the shingles rashes.

I have since wondered if 3 times daily is insufficient in some cases. ...Maybe Dr. Lerner was right in saying that Valtrex needs to be taken 4x/day for maximum effect?

(The blood half-life of acyclovir is only about 3 hours.)