• Phoenix Rising needs funds to operate: please consider donating to support PR

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
14,685
Likes
28,846
Maybe Dr. Lerner was right in saying that Valtrex needs to be taken 4x/day for maximum effect?
Yes, maybe that slightly higher dose used by Dr Lerner is better.

Did your ME/CFS improve in any way after taking Valtrex for your shingles? Or did this antiviral have no effect on ME/CFS symptoms?

I imagine there must be some cases where ME/CFS patients get shingles, but this VZV reactivation does not play a part in their ME/CFS. So the antivirals may help the shingles, but do not improve the ME/CFS.

But we know there are also cases like the ones Dr Chia detects, where VZV reactivation is causing both shingles and apparently also causing ME/CFS. In these cases the antivirals improve both conditions.
 

Pyrrhus

Senior Member
Messages
600
Likes
1,553
Location
U.S., Earth
Did your ME/CFS improve in any way after taking Valtrex for your shingles? Or did this antiviral have no effect on ME/CFS symptoms?
There was no effect on ME symptoms during/after treatment.

(Although there was an unexplained energy boost the first week I took it, similar to how I get an short energy boost after the flu.)
 

Belbyr

Senior Member
Messages
530
Likes
1,314
Location
Memphis
Is Dr Chia still finding enteroviruses and treating for them?

I decided to send some biopsies to him for fun, + or - I won't know what to make of results because apparently treatment takes forever and if it works... you can't stop. Relapse seems to always happen.
 

Marylib

Senior Member
Messages
593
Likes
356
I had shingles about 2 years ago and took the standard acyclovir dose for shingles. After about a week, I noticed a big improvement in my ME symptoms. But I seemed to feel worse after my Rx ran out. This could have been just my perception and maybe I just went back to my previous lousy state and only noticed the difference by comparison.
Equilibrant makes me a bit nervous. Had a friend who used it cautiously, slowly ramping up but it gave her a bad relapse that took forever to come back from .
 
Last edited:
Messages
4
Likes
7
Location
Canada
I just wanted to add to this conversation my own experience. I have had a high viral load for years, and did not know which virus was causing it. In 2014 I started having a little bit of pain in my upper back on the right side. Nerve pain. It hurt to have water hit my skin in the shower, and worsened after sun exposure. I intuited that this was shingles, since it fit descriptions, although I never had any overt blisters. I have low NK cells and I think my immune system was not strong enough to mount an overt immune response. My only symptom (apart from the general viral feeling + everything else of my illness) was one-sided nerve pain. I went to a regular doctor and requested antivirals. I was offered Valtrex and ended up staying on it for two and a half years. Every time I tried to stop taking it, the pain would return. I finally did a low-dose pulsed protocol of nitazoxanide, which was difficult to tolerate but did get rid of this virus in my body. Following that course of treatment, I felt much less viral. Fewer flu-like feelings. I now only have occasional moments of nerve pain in my back, much more rarely, which I assume is due to the nerve damage (?) effects that the virus had on me for those many years.

However I would like to be really clear that I'm not at all cured of ME. My illness is not at all resolved. I don't know where the shingles reactivation fit into the picture of my ME. I think I probably also have enteroviruses or some other sort of virus that needs to be addressed. I have no idea how many years into my illness the shingles started reactivating. I have had ME since 2005.

Note that I live in Canada and was unable to obtain proper viral titer testing for varicella-zoster virus. I requested antibody testing but didn't get an appropriate work-up. I had chickenpox as a child (same virus) so I think it was unclear whether my antibodies were a result of that childhood illness or whether they were diagnostic of reactivation. My GP didn't know and didn't try to figure it out. The proper testing simply was not available to me. But I know that I had shingles and I know that I do not have shingles anymore. On to tackling the next beast, whatever virus it is...
 
Messages
36
Likes
20
Hello
I am being followed by dr chia he did isolate a enterovirus from my wbc we are waiting for the dna sequencing.. Im hoping that this strand of the enterovirus is the cause of this chines virus. I also have coksackivirus b4 but he said this is a different one...
 

Pyrrhus

Senior Member
Messages
600
Likes
1,553
Location
U.S., Earth
I have low NK cells and I think my immune system was not strong enough to mount an overt immune response.
As you may well know, low NK cell activity may be common in ME. This may be related to the dysautonomia of ME, as the sympathetic nervous system can inactivate NK cells.

I finally did a low-dose pulsed protocol of nitazoxanide, which was difficult to tolerate but did get rid of this virus in my body.
I also used nitazoxanide for its innate antiviral effects! What led you to try nitazoxanide? I found that 250mg 4x/day gave me temporary, mild interferon-like effects, but higher doses gave me intolerable interferon-like effects. What dosage and dosing frequency did you use?

I don't know where the shingles reactivation fit into the picture of my ME.
NK cells are one of the body’s main defenses against herpesviruses, such as the VZV virus which causes shingles. Low NK cell activity increases the risk of herpesvirus reactivation. So, theoretically, ME could lead to low NK cell activity, which would lead to VZV reactivation...
 

gbells

Improved ME from 2 to 5
Messages
899
Likes
940
Location
Eastern NC USA
I had shingles 11 years after getting CFS. It had the classic thorax rash over the ribs. The key thing is to go to your family doctor immediately because you must get on the viral inhibitor within 2 days of showing the rash for it to work. Not getting the drug causes you to get terrible nerve pain for weeks. However, the drug didn't help my CFS symptoms in the least.
 

Wolfcub

Moderator
Messages
5,877
Likes
14,609
Location
SW UK
@EddieB It's hard to tell from the photo. Are the blisters filled with a clear fluid?
But the main giveaway with me, was a very sore bruised feeling all around that side of my ribs. It really hurt like I'd been kicked in the ribs. The pain started before the rash.
Plus there was an unpleasant malaise like flu.

(edit) I took a herbal mixture I made myself, and used that also as a lotion for the rash.
I used Golden Seal, Echinacea Angustifolia, Myrrh, ( both tinctures)and Chickweed. I got no post-herpetic pain both times I had Shingles, and the rash was gone entirely in 8-9 days.
Sadly Golden Seal can't be grown sustainably any more, so I heard recently. It always was the price of gold dust, but now it's incredibly hard to find, if possible at all to obtain. Such good medicine too.
 
Last edited:

EddieB

Senior Member
Messages
344
Likes
377
Location
Northern southern California
@EddieB It's hard to tell from the photo. Are the blisters filled with a clear fluid?
But the main giveaway with me, was a very sore bruised feeling all around that side of my ribs. It really hurt like I'd been kicked in the ribs. The pain started before the rash.
Plus there was an unpleasant malaise like flu
The photo was from over a year ago. Yes, there was a clear fluid/draining from the sores. I don’t remember it being itchy. I have pain in that area that comes and goes, so hard to know if it was caused by it. Flu/malaise is a pretty much constant for me, so again had to know. It would have been a very minor outbreak, if one at all.
 

ljimbo423

Senior Member
Messages
3,335
Likes
8,071
Location
United States, New Hampshire
Could someone comment on this picture, would this be considered a possible outbreak?
I don't know if that's an outbreak. I had one a few years ago on my arm. It looked different from what I can remember. You still might have an outbreak though.

I also had flu-like malaise as Wolfcub describes and the blisters were incredibly painful. I was getting 1-2 new blisters a day for a few days. Then I started taking 10-12 capsules of Echinacea extract a day. Which is a very fast acting immune system stimulant.

Within 24 hours I stopped getting new blisters and within 2 days, the blisters I had, all popped and had started to heal. Imo, if you have an outbreak, your immune system is low for some reason.

That's why the high dose Echinacea, stopped my outbreak so fast. No antivirals needed, just gave my body's immune system the boost it needed to put the virus back into latency.:)
 

EddieB

Senior Member
Messages
344
Likes
377
Location
Northern southern California
don't know if that's an outbreak. I had one a few years ago on my arm. It looked different from what I can remember. You still might have an outbreak though.
May not be. Just going by Hips comment, that even a tiny outbreak could indicate carrying the virus.

Some photos of another outbreak I had. Doctors said it was poison oak, not shingles. I grew up in the Santa Cruz mountains and I know what poison oak is. There isn’t any where I live now, so l don’t know what caused this.

EA1A739E-3FE5-4434-B290-27BB573B44A3.jpeg
83FCAD20-5036-4715-82EB-4EF76114FD93.jpeg
 

Hip

Senior Member
Messages
14,685
Likes
28,846
Could someone comment on this picture, would this be considered a possible small outbreak? Actual size was slightly smaller than the photo, on my lower back
This is how the CDC describe shingles:
Shingles is a painful rash that develops on one side of the face or body. The rash consists of blisters that typically scab over in 7 to 10 days and fully clears up within 2 to 4 weeks.
You can see other shingles rash pictures in Google Images.
 

Tammy

Senior Member
Messages
1,664
Likes
2,759
Location
New Mexico
@EddieB Yes, it is very possible that can be a shingles outbreak on your arm. Between my ex-husband, my mother, grandmother, friend and myself, I have seen various different ways that shingles can present itself. It can happen anywhere on the body.......one side......or both sides. The actual rash may present itself differently also at different times. My grandmother would sometimes get just a few in a very small area so yes, your previous photo of spots on lower back could also possibly be shingles.
 
Last edited:

ljimbo423

Senior Member
Messages
3,335
Likes
8,071
Location
United States, New Hampshire
This is from the Google images link Hip posted above. These are what my blisters looked like but mine were on my right arm. There is a wide range of different pics their though and many of them look very different from this one-
1594597467690.png
 

Tammy

Senior Member
Messages
1,664
Likes
2,759
Location
New Mexico
Sadly Golden Seal can't be grown sustainably any more, so I heard recently. It always was the price of gold dust, but now it's incredibly hard to find, if possible at all to obtain. Such good medicine too.
I get Goldenseal root alcohol free tincture by Natures Answer on Amazon. I think Natures Answer is available in UK?
 
Last edited: