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Could it be chronic Varicella Zoster Virus?

heapsreal

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I just want to bring this up for discussion but will start with my experiences that have made me think its possible that VZV could be an ongoing issue with many cfs/me people.

SO i had chickenpox as a kid and it ran its course like most kids, so quite benign, a few itchy spots, a few mild viral symptoms etc, nothing to really say.

Fast forward 25-30yrs, age 31, in a post viral state from cmv mono when i got chickenpox, again. Not so benign, actually up there with one of the worst moments of my life and think it was the straw that broke the camels back when it came to cfs/me for me. I was one big swollen pimple with pussy pimples and sores on top on that. They were as itchy as, headaches and dizziness, fevers. I couldnt shave due to the pox. My mouth bled when i brushed my teeth and the other end bled after whipping it when going to the toilet. After 5 days the fevers stopped, the pussy sores started to dry up but got itchier, still with headaches and lethargy was severe. walk outside the house and not leaving the yard intensified fatigue.

It took several months to feel somewhat normal (which never really happened) and might have occurred sooner if i didnt then get ebv mono.

Fast forward 5 years or so and i find a good cfs doc and did antivirals with good success, up and downs etc but generally up with many posts on here.

Of interest and concerned about possibly getting shingles or even chickenpox again, 9 months ago i got serology done for VZV/varicella zoster virus. Here in australia we cant get viral titres tested, they just come back positive or negative with igm and igg. My test just came back igg positve, evidence of past exposure, represents good immunity?????

Two weeks ago i had a shingles outbreak on the side of my head. Initially i didnt realise i had shingles, just some type of viral infection, thinking it was my normal cmv reactivation for which i start taking famvir and do 10 day courses now when virus symptoms start. Previously i had been on antivirals constantly for a few years but now use them when required.

This did feel different to my previous possible cmv episodes, though as i didnt get the sore glands i normally do and this time i was constantly tachycardic and a mild fever. 4 days post antivirals i felt a bit better and was over due for my hair cut which my wife does. Usually a no blade clipper. This was when we saw the shingles rash which was starting to crust up. I was concerned but sort of glad as it wasnt as bad as i thought it would be as i recall my chickenpox episode aarrgghh. time will tell

Last week was a short working week for me of 2 days for me, it was a struggle. Still ongoing headaches that were getting worse and normal pain killers not really helping much and lethargy. Yesterday i was suppose to go back to work and had 4 days. i couldnt do it. I saw my doc who wrote me off for the week to rest up and some better pain killers which have helped and probably why im posting now.

What was interesting talking with my doctor was that i brought up the test i had 9 months ago saying i had good immunity against VZV, also said where i had the rash was where i usually have those brain fog type headaches, this seemed to intrigue him. He also stated that maybe the test (rememeber not titres) was evidence of a chronic low level VZV infection. It would be interesting to know what the titres were and if there is a certain level where they could say that its an active infection?

There are VZV infections that occur without and rashes etc and like ebv i did come across some research showing VZV can suppress nk cells.

So bringing this up as its not really spoken much about as a chronic infection, more as a one off type of infection. Would be interested to hear on others thoughts and if they have found any interesting research on this subject as well as those who have had multiple chickenpox and or shingles episodes.

cheers!
 

SOC

Senior Member
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I don't know that I can contribute much other than to say I've had shingles multiple times at what my GP described as "an unusually early age".

I don't remember having chicken pox. I would have said I never had them. I know I didn't have the vaccine. I was tested for immunity in my mid-20's and was found to have antibodies, so I must have had chicken pox at some time.

IIRC, none of my ME/CFS specialists tested me for VZV, but given that I have chronic EBV, HHV6, and HSV, I wouldn't be surprised to find VZV is a problem as well. :rolleyes:
 

heapsreal

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I don't know that I can contribute much other than to say I've had shingles multiple times at what my GP described as "an unusually early age".

I don't remember having chicken pox. I would have said I never had them. I know I didn't have the vaccine. I was tested for immunity in my mid-20's and was found to have antibodies, so I must have had chicken pox at some time.

IIRC, none of my ME/CFS specialists tested me for VZV, but given that I have chronic EBV, HHV6, and HSV, I wouldn't be surprised to find VZV is a problem as well. :rolleyes:


I guess the treatments are the same but I wonder if damage to the nerves and nervous system are different as vzv seems to like nerves more than other herpes viruses?

I think just like shingles that adult chickenpox should be treated aggressively with antivirals as well as mono from ebv/cmv/hhv6. I guess im preaching to the converted ;)
 

anne_likes_red

Senior Member
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My 12 y.o. had chicken pox at 16 months, then reactivation (an outbreak along a 'nerve line' around the hip) at 7 y.o. We were away camping when this happened and it resolved before we saw a doctor.
Nothing since, though all is not 100% well with him energy-wise. :cry:
(Won't go into details in a public space.)
Anyway...yes, I have been wondering about VZ for a while.
 

heapsreal

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My 12 y.o. had chiox at 16 months, then reactivation (an outbreak alchickenpox 'nerve line' around the hip) at 7 y.o. We were away camping when this happened and it resolved before we saw a doctor.
Nothing since, though all is not 100% well with him energy-wise. :cry:
(Won't go into details in a public space.)
Anyway...yes, I have been wondering about VZ for a while.


Interesting. My daughter had chickenpox the same time I did but mild probably normal for 2 yo. When she was 12 she got chickenpox again. This time we gave her antivirals as obviously her immune system didnt make antibodies. Maybe genetic thing. She has no fatigue issues at 15yo.
 

heapsreal

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http://jid.oxfordjournals.org/content/186/Supplement_1/S91.full.pdf

Chronic VZV encephalitis. This variant of VZV encephalitis is seen almost exclusively in patients with AIDS or other conditions with depressed cellular immunity. The onset of the encephalitis may occur months after an episode of herpes zoster, making the diagnosis more difficult [89]. Pathologic studies reveal multifocal lesions in the white matter near the gray-white junction, with small vessel vasculitis and demyelination [90, 91]. The clinical presentation is usually subacute with headache, fever, mental status changes, seizures, and focal neurologic defects, including aphasia, hemiplegia, and visual field cuts [92–94]. Magnetic resonance imaging studies demonstrate plaque-like lesions in deep white matter, changes consistent with demyelination, and late development of ischemic or hemorrhagic infarcts of cortical and subcortical gray and white matter [95, 96]. Examination of CSF reveals mild mononuclear pleocytosis. VZV DNA has been amplified from the CSF of encephalitis patients by polymerase chain reaction (PCR) techniques [79, 97]. The clinical course is often progressive deterioration and death, although anecdotal reports have suggested benefit with high-dose intravenous acyclovir therapy [90, 98].

Zoster sine herpete. Clinicians frequently encounter patients who present with zoster-like neuropathic pain but never develop the characteristic dermatomal rash. Recent detailed studies of a few patients presenting with dermatomal pain have established that some of these cases are due to VZV reactivation. Patients with this syndrome, termed zoster sine herpete, have rising titers of VZV-specific antibody in both serum and CSF and have VZV DNA in CSF and peripheral blood mononuclear cells detectable by PCR [99, 100]. Since there is no easy means for making the diagnosis, the incidence of zoster sine herpete is not known. In anecdotal reports, responses to antiviral therapy have been inconsistent.
 

Gingergrrl

Senior Member
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16,171
@heapsreal Sorry to hear you are still going through all of this and glad you were able to get a week off work to rest. We've talked about this before but in case it helps others, I have tested IgM positive for VZV since I first got tested in July 2014 at OMI. This did not change after seven mos on Famvir.

I have never had shingles and had a mild case of chickenpox once at age 11 (with no lingering issues at that time.) In my upcoming blood work (which I will be breaking into several parts b/c I do poorly when I give too much blood at once) I will be checked again for IgG and IgM of VZV as well as "VZV Quant RT PCR" (not sure exactly what this means?)

The other IgM's that I test positive for are EBV (plus EBV early antigen remains positive) and most recently I am positive on one Echovirus which we are re-checking. Not sure if any of this info helps?
 

heapsreal

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@heapsreal Sorry to hear you are still going through all of this and glad you were able to get a week off work to rest. We've talked about this before but in case it helps others, I have tested IgM positive for VZV since I first got tested in July 2014 at OMI. This did not change after seven mos on Famvir.

I have never had shingles and had a mild case of chickenpox once at age 11 (with no lingering issues at that time.) In my upcoming blood work (which I will be breaking into several parts b/c I do poorly when I give too much blood at once) I will be checked again for IgG and IgM of VZV as well as "VZV Quant RT PCR" (not sure exactly what this means?)

The other IgM's that I test positive for are EBV (plus EBV early antigen remains positive) and most recently I am positive on one Echovirus which we are re-checking. Not sure if any of this info helps?


Because you dont have any rashes etc i wonder if its a chronic low level infection thats causing your cfs?? zoster sine herpete?
 

Gingergrrl

Senior Member
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16,171
Because you dont have any rashes etc i wonder if its a chronic low level infection thats causing your cfs?? zoster sine herpete?

@heapsreal I am assuming that "zoster sine herpete" means VZV infection on IgM test but without any outward signs (no rash, lesions, shingles, etc?) It is confusing for me since I had chicken pox at age 11 whereas I had mono from EBV at age 41. Did the VZV remain hiding since age 11 (but I never tested it so I wouldn't know) or did the EBV cause it to re-activate?
 

heapsreal

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@heapsreal I am assuming that "zoster sine herpete" means VZV infection on IgM test but without any outward signs (no rash, lesions, shingles, etc?) It is confusing for me since I had chicken pox at age 11 whereas I had mono from EBV at age 41. Did the VZV remain hiding since age 11 (but I never tested it so I wouldn't know) or did the EBV cause it to re-activate?

i have read that both can lower nk function and probably other immune funtions, so im guessing letting the other virus reactivate, chicken or the egg?? treat them both?
 

SOC

Senior Member
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7,849
@heapsreal I am assuming that "zoster sine herpete" means VZV infection on IgM test but without any outward signs (no rash, lesions, shingles, etc?) It is confusing for me since I had chicken pox at age 11 whereas I had mono from EBV at age 41. Did the VZV remain hiding since age 11 (but I never tested it so I wouldn't know) or did the EBV cause it to re-activate?
Herpes viruses are known to reactivate each other, so it seems quite possible that EBV at 41 yo could reactivate the VZV. I think, although I'm not certain, that it has to do with how herpes viruses affect the immune system.
 

heapsreal

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Since the shingles my sleep has gone very fragmented, waking every hour or 2, thats with sleep medication.
It seems to have done something to this little brain if mine.
 

SDSue

Southeast
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C'mon @heapsreal ! Pull it together and get better. If our fearless leader - the one who pulled himself out of the muck and returned to work - goes down, we may lose hope!

Seriously, I hope we soon hear good news that you are back to baseline!