Anyone else get recurrent herpes viruses that are not EBV?

vision blue

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I feel like recurrent virus since 2014 is giving me my dysautonmia symptoms but no one will listen. if i here the word "impossible" one more time, i might scream. I'd like to know if anyone has anything similar.

Recurrent Little blisters with nerve pain (suggests a herpes virus, zoster? simplex?) in 2 places (chest near breast and on forehead) . the blisters themselves are trivial (and no longer burst open when reoccur) but the symptoms that come with it are devestating including sympathetic excess, high blood pressure spikes, sensations that my head is flying all over the places when sleeping or dizzy when awake, pain along distribution of one of the cranial nerves (on bridge ofnow), feeling that someone shocked my heart with a de-fibrillator (often duirng the night but leads to lasting things0> Heart rate accelerates with changes in position, but also dropeed at rest.

If it wasn't that symptoms at the beginning were wiped out by antivirals (which i could not tolerate and can no longer risk), i'd wonder if it was somehting else and not a herpes virus. not sure if any other can do those symptoms of the blisters and nerve pain besides zoster and simplex?

becaue i had a full 2 months w/o a recurrence and symptoms were subsiding it was like being hit by liighening bolt when virus returned aburbtly and bringing with it all the other symptoms with heart and worsening bp etc etc.

Over the years of this, especially in beginning, i went to 3 infectious disease doctors, spoke to one more by phone (the best by far, also a researcher) and one by email. and of course read a bunch.

so damn discouraged. this was just a bonus disease i got 5 years ago, likely from two many doctor visits. was alredy a zebra before this. these symptoms are so damm awfi; though and have them right know as i type and I do think these dysutonomia symptosm are dangerous plus herpes does kill people- just goes quietly unrecognized

Any other zebra in this pasture?
 

Hip

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Recurrent Little blisters with nerve pain (suggests a herpes virus, zoster? simplex?) in 2 places (chest near breast and on forehead) . the blisters themselves are trivial (and no longer burst open when reoccur)
If that is a varicella zoster virus rash (Shingles rash), then you could have VZV ME/CFS, which is a very treatable form of ME/CFS, which Dr Chia has found can be cured in a matter of a few weeks on simple antivirals like acyclovir, Valtrex or Famvir (Famvir is usually better tolerated than acyclovir or Valtrex). See timecode 6:58 in this video interview of Dr Chia. The normal Valtrex dose for shingles is 1,000 mg three times daily. Ref: 1

You can also use the antiviral brivudine, if you can obtain it from Germany. This is potent for VZV, and only requires a week's treatment. Ref: 1

The H2 antihistamine cimetidine 200 mg three times daily plus 400 mg just before bed can be an effective off-label treatment for varicella zoster virus. Refs: 1 2

More info in this post.
 

vision blue

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for everyone else, please jump to the last pargraph on what am hoping to connect with others , and for
@Hip: Thanks for the post. But note first that I do not have VZV ME/CFS. I meant to mention this in the post but probably didnt: I've been sick for many years before the herpes. That was just a bonus. Buy one, get one free.

I believe I did mention in the post that antivirals were effective but could not tolerate. To elaborate, I tried both Valtrx and acylovir 3 or 4 times, the longest I lasted 3 weeks, but throwing up galvascon and antivirals was the final straw and my esophagus actually has never been the same since.

i thought that it was direct contact with the antivirals that was so damaging (I cannot swallow pills - or rather my sentinel esophagus cannot tolerate swallong pills tho how it can tell its a pill i have no idea) so i crushed them and mixed with all manor of things. Figure it was direct contact, i tried like crazy to get someone to give me IV acylcovir but they would not. They actually count spots (!) and i didn't have enought to qualify. So i fashioned an intranasal absorption system and was going to make it even better- only to find that acylovir did the exact same thing to my esophagus even though it was not touching it!

I have not tried famvir. i do have a few pills sitting in my closet i could try which i had asked for a couple of years ago . but after what happened with the other two meds, by then it seemed not worth risking. I already do not weight enough and any further assault to esophogus may mean being unable to eat. And since famvir is what's known as a prodrug, like Valtrex, it has to go thru the GI track to work- so i can't fashion anything submucousal with it. its too bad though that

I am not familiar with the german-only drug. will look it up. if its not a prodrug then if i can get it, will try some kind of submucousal delivery- after i check all its ingredients to see if safe (I also appear to have very reactive mast cells). thanks for that tip.

on Tagamet (cimetdine), i know all about its use as an antiviral and have read the original journal articles on the research. Alas, Its one of the meds thats contraindicated with mao-A/tyramine issues (something you and I butted heads about before) so have been reluctant since that can land me in the ER. if they had a lozenge i might in a moment of weakness give it a go anwyay. I've tried crushing pepcid, another H2 blocker and it gives me a stomach ache. (i cannot take pepcid complete, which is the only one available as a chewable/quick dissolve since cannot tolerate baking soda. incidedentally, cannot tolerate baking soda or potassium or oral magnesium- i mention that becasue those could go along waytowards ph balancing of the often acidic crushed meds). I recently saw that zantac is available as a powder by prescription only so am thinking of requestiong that, tho again at this point given mast cell troubles and esophagus, i'm pretty close to swearing off all big pharma meds.

incidentally, i've also tried lauricidin and lysine (lauricidin was working but had same effects on esophagus and lysine did nothing and made me naseous).

Thanks for trying Hip, even if been there, done that. sigh.

And for everyone else, Anyway, still curous to know if anyone else has these non standard recurrences of zoster or simplex that's gotten up into their cranial nerves and/or gives them symptoms like i described of eleectiricty spreading in chest and/or head and alterations to heart rate and blood pressure and/or dizziness. Also interested if anyone has known herpes simplex 1 on their chest or forehead (I know this is herpes gladatorium or however its spelled but that seems like more of a nuisance and no one reports heart trouble from it).
 

merylg

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I’ve had one episode of suspected Shingles above one eyebrow (only one small sore & tingling under the skin). My mother had a more severe outbreak also above one eyebrow. I remember the concern that it was so close to her eye.

Recently another member of my family had Ramsay Hunt Syndrome Type 2, Shingles of ear & facial nerves with hemi-facial paralysis. Recovered in hospital with treatment fortunately, as some do not recover from the paralysis.

I’d like to know if Zantac (Ranitidine) might help, as I tolerate that well for gastric & oesophageal issues.
 

vision blue

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@merylg. That was one of my spots- above eybrow, though a tiny bit higher maybe. eyebrow ridge did swell up. Since for a while i did have severe vertigo, and some ear pain, ramsey hunt was a possiblity but since i didn' get facial droop or paralysis they declared i did not have that - and of course based on their textbook bins, also declared therefore the remainder of my symptoms could not be from zoster.

I think other H2 blockers should help, but not sure. the original research was done with tagemet but it looked like that was more because it was just used more then since the other h2 blockers came later. If you were on it when you had an outbreak it may well be why it was more minor. I guess that's all the symptoms you had- no dizziness or pain on bridge of nose or headaches etc? i think maybe depends what nerves it gets?
 

Judee

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Have you tried RMA (Red Marine Algae)? It's suppose to be very good for herpes and shingles. I've used it because I read somewhere on a product page that it can also be good for HHV6 which I've had abnormal titers for.

It does give me slight energy. I've read that it has iodine in it but I don't think the amount is much. I've also been on iodine long term and never got that slight boost that I do from RMA so I think it might be the anti-viral action that is helping.

Edit: looking back at a review I did reminded me that it can make my heart race. I had trialed it for 40 days straight to see if it would help with the HHV6. My energy did not increase any nor did my ME/CFS improve over the tiny energy bump so now I only take it once in a while when I have something I have to get done.
 
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merylg

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@merylg

I think other H2 blockers should help, but not sure. the original research was done with tagemet but it looked like that was more because it was just used more then since the other h2 blockers came later. If you were on it when you had an outbreak it may well be why it was more minor. I guess that's all the symptoms you had- no dizziness or pain on bridge of nose or headaches etc? i think maybe depends what nerves it gets?
No dizziness or pain or headache. I think GP gave me antibiotic & Valtrex.
I do get headaches quite a bit though now & sometimes nerve zaps from turning head but have arthritis in spine, bulging discs & facet joint arthrosis, a previous whiplash injury & have had Ross River Fever 2015. Did IV Vit C for that. Twice weekly for 3 wks. Also done treatment for Tick Borne Illness so feel unwell most of the time actually. Have developed paroxysmal Atrial Fibrillation in last year or so... one more thing :((

Did 23andme in early days & health report quite useful then, plus other programs. Recently did WGS more confusing info. Ran the raw data through two programs. Useful but also confusing.
Asked for Muscle Dystrophy panel, Connective Tissue Disorders panel & Immune Deficiency panel, plus got Periodic Paralysis panels some of which is research. Need help to interpret.

Next step might be ‘long reads’ not sure how useful that would be?
 

vision blue

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@Judee Thanks. Had read about it but didn't know anyone who has tried it- you are the first. I'm so reluctant to try stuff these days for one reason or another, i have so many restrictions feels like only things left for me are aroma therapy and pet therapy and with my mind these days i might end up getting those switched...

interesting on the heart rate. and that's a good approach to try for 40 days assuming tolerable side effects. .

interesed in the hhv6. I have wondered on that. Did your titers show elevation beyond the expected igg exposure sometime in past? I have never had that tested. Did you ask for the test?
 

vision blue

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@merylg
First a quick thing that might be of use to others- its good doc gave you antibiotic with the valtrex. surprised because few know that some antibiotics have some antiviral properties against herpes viruses. was thinking about taking some erythromycin, only one i can tolerate, but i get such bad lower gi side effects, not sure i want to deplete my gut bacteria again.

ok, on the genetics, glad you brought that up because was going to ask about the MAO snp you mention in your signature. What variant of note do you have there? I don't have anything obvious with mao - i think one copy the faster processor, and the other th slow one, yet symptom wise i've suspected low MAO-A activity of unknown cause. was hoping to find answer in genetic data, but did not.

I also did 23and me testing in the early days like you. (V2 chip ) and agree with you was worthile back then with the old analyses. I paid a ton of money back then for it and then i remember for a while they switche dover to a monthly subscription fee for new users, but i had paid so much i had a lifetiem account, though a year later everyone had a lifetime account as they switched business models. again, back in the relatively early days before they found their fortune going to bed with big pharma.

I did not do whole genome testing like you did , but did do whole exome testing- that was enough so i'm likely not to bothe rwith whole genome. which programs did you run it through?- i ran mine through of course promethease and then i have some access to a rare genetic disorder database. If you know of some software to better analyze it, please let me know. I'm pretty obsessed with privacy these days though and lately companies have changed policy to pretty much do anyting they want with your data as everyone is trying to capitalize on the popularity and find a way to make there fortune. promethease is a great example. used to be they were satisifed with the 5 dollar or 2 dollar payments and they deleted your data off their server pemrantly in 30 days and did not use it for anyting. now theyve changed and they can and do do anything with it they want , they even emailed all old customers for whom they had email for saying hey why don'tyou upload your data again, and we'll keep it permanantly on our servers, and we'll give you a new analysis for free if you do that. Theyre kicking themselves for all that data they deleted. um, no thank you.

i used a company for exome sequencing that has been bought out- but for some reason i can no longer access my data. i do have a download of the raw data files but theyre big and need some software so i can play with it more. have to look again for something.

I can tell you on the long reads, there really is only one reason to bother. If youve found a sequence of interest and can only identify say the genus, but you want the species, or you get a species, but you want a subspecies, then the long reads can be veyr helpfu. for example, i also had analyzed my blood for viruses (using genetc analysis) and a small bit of HSV1 DNA turned up. That was actually when i raealized that alleged zoster was probably HSV1 not zoster. But anyway, there was no way to get info on the exact type of hsv1 since the reads was so damn small. if it was bigger, i would have learned more. But sounds like you want long reads on your own dna rather than for viral? You can skip it i'd think- for your own dna, i'd say a better way to spend the money is if a snp turns up of interest thats potentially pathogenic and you really think it may be playing a role inyour health, then you have to get it verified by targetting that gene in a new sampling.

can you say more on the panels you ordered? did you mean genetic or did you mean antibodies or other blood markers? (I mean if you can answer and its not too much to type).

also interested in your vitamin C by IV. I have been trying to find out if i should pursue that becasue i have very high oxidative stress, can't find a supplement i can tolerate, and some of the OAT testing i did showed pretty much 0 vit c levels (not surprising).

I do not know about ross river fever. new one for me so will look it up to educate myself. also curious if you feel like typing if you had tick borne illness verified or just took a chance. When i did a ubiome test on 5 sites on body, it turned up much to my surprise Bartonella which i had not even thought of. am thinking if i should follow that up.

on the atrial fib, can you identify any triggers at all? I had atrial tachycardia (one step away) and 4 months of PVCS with 15 out of every 65 beats 24 hours a day. that's in the range where you should do something to stop them. I got lucky with that one becasue it turns out it was from hemp seeds. i was eating 1/2 ounce of hemp seeds a day (blended to form a milk). Pvcs went to 0 without them. the atrial tachy i think is connected to this virus. when i get the zaps to chest it does somehting to my heart rate

again if you feel like typing, interested in what the zaps to your head feel like. its so hard to put into words and would like to know if its simiar. i also have some cervical issues but mine seems to come and go with virus (and i've wondered with catecholamne levels).

on the panels you need help with, would be happy to try to take a stab at it, whether its genetic or blood markers.
 

Judee

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Did your titers show elevation beyond the expected igg exposure sometime in past? I have never had that tested. Did you ask for the test?
No my abnormal titers were the IgG type however I also have a condition called IgM Deficiency and my doctor didn't know whether that would mean an IgM reaction wouldn't show for me. I tried to contact an agency that works with Immunoglobulin diseases to see if they would know but they never got back to me.

It was my doctors suggestion to order the test.

Have you considered finding a environmental doctor since you are reacting to so much? Or have you looked into MCAS (Mast Cell Activation Syndrome)? There are several people here that have that.

aroma therapy and pet therapy
Be careful though because some aroma therapy can be toxic to pets. Here's one website that talks just a little about that: http://www.vetstreet.com/our-pet-experts/do-essential-oils-pose-a-risk-to-pets

I'm so reluctant to try stuff these days for one reason or another
I understand. I'm super sensitive too and most of the time just start with a pinch of a substance.

The environmental doctor often told me that everything is cumulative. Meaning if we are eating our allergy foods and the pollen counts are high we feel it but if we are avoiding our allergy foods and the pollen counts are high we can tolerate the pollen counts better.

For instance, I find this to be true for apples. I can't eat them in the summer because of the tree pollens (even the cross reactive ones). If I do I get very itchy but I don't get the same reaction in winter.

Of course, it's not just for foods and pollens but other things we get exposed to as well like chemicals and even joint subluxation. I have MCS (Multiple Chemical Sensitivities) and they make everything worse for me but I react more to the chemicals when I'm needing a visit to the chiropractor.

Hope I answered all your questions for me.
 

vision blue

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@Judee Yes thanks much you answered all my questions. The IgM deficiency is intersting. About a quarter of those with CFS, at least in one german population since it seems to differ depending on subject pool, have elevated IgM. If you ever have your numbers handy- for IgM, IgG, and IgA (and if by luck also have IgG subclasses...) - would like to see thaem i posed a seperate thread that i'm hoping to collect more of those numbers from others. I think there's an untapped goldmine in there and i want to build a database.

I believe I do have MCAS and that have had it all my life. As did my mother Only realized i have overreactive mast cells a couple years ago. I would have been fine with it most likely had i not had dental work that i reacted to a couple of the chemicals . it was my Tipping Point and have been in the land of the sick ever since. had plenty of data to tie it in to the dental exposure given what happened in the hours, days, weeks, and then months after. Finally made it clear though, i wasn't just unlucky with an "allergy" but my mast cells were primed to overreact to stuff.

since you have multiple chemical senstiivty, i know some think that pretty much is really MCAS, though not everyone buys that.

Some use the "bucket" anology for that cumulative thing you are talking about - that as long as the bucket doens't overflow, youre ok. Mostly it hasn't helped me yet. But i like your apple example. that's a good one. (I seemed to be reacting to some apples and not others- but i believe its that most places use wax on the apples, even whole foods. wheni finally went to stragith from local grower, no wax- i had no reaaction. still too soon to tell though since just figured that out less than a year ago and need to retest a few times) .

i have to re-look up hhv6, but my recollection (though could be confusing it with a differnt herpes virus) is that its one that nearly everyone is exposed to , so everyone would be expected to have igg antibodies to it. that's why was asking if was just igg - but of course with an igm deficiency, that makes it all impossible to figure out.

Thanks on the aroma and pets. I was just joking about that's what's left for me but good to know- especially since i got a wicked sinus infection after aromatherapy and haven't been so keen since then.

I don't think i've ever come across an envtl doctor. I had a toxicologist once who was helping me with the dental exposure issues. of couse my insurance covers nothing i need and i pay a fortune for it, but i digress.

also interestuing you find joint issues and the chemical stuff interact. I wonder if inflammation is the mediator. guess depends on cause of joint issues too. I often find things trade off - one cluster of symptoms up means another is done. Sometimes i will try to give myself an allergic reaction to bring the other side of the see-saw down if i think my immune system is reacting too strongly to what it thinks are pathogens but are not.

Since you react to envt stuff, will mention one thing (I react to tons of chemcials btw, and more so every day) - seem to have developed a classic allergy (of the IgE type) to all dairy (even goat, sheep, and camel, and butter from these things too), even a small drop sets things off. hives, itching, swelling, diarreha. And also to coconut. But one odd thing is that i don't seem to get the skin symptoms until the night, regardless of the time i consume it (with the excpetion of GI side effects).; whether that;s becasue there is a delay or because my skin only reacts at night i do not know. Anyway, i recently asked them to test for IgE for those two which they did- and they are both negative. so damn frustarting and i put further allergy testing including for mast cell on hold. what' the point . I'm certain its not an IgG response to the milk or coconut. , leaving me just not knowing what the hell it is. more envtl sensitivity of a type not well defined presumably. Who knows, maybe another zebra will read this and say hey i know exactly what you are talking about.
 

heapsreal

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Another option to try is lysine. Im on antivirals all the time but every couple of months i get a left sided headache and a mild rash where previous shingles were. Without antivirals it has been alot worse. After i go through a viral type symptoms/episode the headaches can hang around longer which may be neuralgia from the nerve damage, which i have some pain killers for. I have had some cortisone shots that helped greatly with headaches in that area. With antivirals its about a week generally of feeling bad. Off antivirals when i have had this i have been off work for 3 months. So 2 big episodes was enough for me to stay on antivirals. It must be hard when you cant tolerate the antivirals.

It might be worth looking into mollarettes meningitis which is a chronic form of varicella effecting the brain??
 

vision blue

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@heapsreal oooh. That so far is closer than anyone else. If you've gotten any useful insights on recurrent shingles (most deny it), please pass that along. I think i also get post herpatic nerualgia from damage, but often that's the only thing medicos will acknowldege. but i've read research studies finding that alleged post herpatic neuralgia is often low level of the virus being present.

Also curious if your rash now behaves like mine- milder than the first and rarely ever opens up now. sometimes i'll just get it for a day and it seems to reabsorb, yet the other symptoms are there. Mostly i think a rash must mean active virus, right? but then I wonder if it could be my own immune system? mine too always in same place

yes it is hell not being able to take antivirals, as they did help tons. The recurrences after the first 2 years were milder, though this one hitting me now is the strongest in well over a year so not sure how will play out. Right now the headaches are coming daily starting at 4pm but at least not present all day every day when this thing gets going.

in terms of lysine, i've tried the powder but didn't help and made me naseous. i coudln't risk upping the dose.

on the meningitis, i've read a bunch of articles by Gilden on zoster and simplex in the central nervous system, including spread to vessels which i wonder about. So far, i'd say my symptoms can be accounted for by perhipheral nervous system (cranial nerves) and not central nervous system tho am not sure When i look at a map of the dermatomes, e.g. http://www.acupuncture.uk.net/trigeminal-neuralgia/ for my head symptoms, i can localize both the eruptions and pain to the opthalamic division of the trigeminal nerve. I think when i get the "zaps" to the head, they are electric shock sensations which veyr much fits trigeminal nerve and probably i should stop calling them zaps and start calling them pain. When they occur, they are agonizing and wake me up from sleep every 5 minnuytes for the frist 2-4 hours of sleep. Enough to drive a person out off their mind and nearly did. Had that most of about 1.5 years. so i should proably start calling it trigeminal neuralgia but the opthalamic division rather than the more common lower divisions.

In my case i have a second site- the chest- and both come back together with the chest precedin the head by 2 days (and both preceded by feeling GREAT for 3 days- i've figured the herpes virus shuts off my immune system so it can replicate and having lower than normal immune activity i feel better) and one thing i don't know is if my symapthic nerve dysfucntion is from the head lesions (cranial nerves) or more to do with the chest lesions.

grrrr. (and thanks)

5 years for me (though sidelined for years before anyway)
 

valentinelynx

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Interesting. I had 3 episodes of mini-shingles breakouts in one year a few years back. Only a few bumps each time, but a lot of itching. I didn't notice exacerbation of dysautonomia, though. Since then, I've been on a regiment of 500 mg of famciclovir twice a day every day, with no further outbreaks. I didn't tolerate valcyclovir: it caused tachycardia, maybe other symptoms, I don't recall.

The irritating thing is that I never had chicken-pox! My only exposure to the varicella zoster virus was from being vaccinated prior to starting medical school. The vaccination was mandatory. Oddly, I didn't seroconvert from the vaccination, either (this is actually fairly common). Then, years later, when tested again, I did show up positive for varicella exposure. Then I started getting shingles. Gee, thanks for the vaccine!
 

heapsreal

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Also curious if your rash now behaves like mine- milder than the first and rarely ever opens up now. sometimes i'll just get it for a day and it seems to reabsorb, yet the other symptoms are there. Mostly i think a rash must mean active virus, right? but then I wonder if it could be my own immune system? mine too always in same place
Yes, that is how my rash reacts. The rash may get a little itchy but itself not a big deal but the overall headaches/pain and just viral feel is the issue and the rash is just a sign its the vzv having a crack at me.
I will get back to you.
 

vision blue

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@valentinelynx Hi. where on your body were the mini-rash? mine is both chest and head and wondering if its one or the other of those that produces my sympathetic overdrive and heart reactions.

i wonder if i should risk trying famvir. my gut and esophogaus reacted so badly to acylovir and valtrex i don't know if worth the risk. and since famvir is a prodrug, i can't snort it either (though with acyclovir, i got same reaction even when i snorted it).

You are not the only one that got recurrent shingles following the vaccine. Some of those include a few people who tried it because they had recurrent simplex infections and since simplex and zoster have 70 percent gentic overlap, some thought the shingles vaccine might help the zoster. And a few did find it had that effect, but others (even more I think than the ones it helped) reported it have them shingles which now recurred as well. I assume you used the live vaccine since the other one has't been around that long; haven't gotten much info yet on this new one, but at the moment i can't risk any vaccines given most contain aged proteins and that and the glutimates would give horrific reactions perhaps hyptertensive crises.
 

vision blue

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@heapsreal Interesting that yours does too. how come docs refuse to acknowledge this? I had an Infecitous disease doc for a hopsital delcare "shingles lesions do not effervesce" . was annoying because he was otherwise smart, just too by the book that never applies to me.

Am enclosing pics of the single lesion i just got in same place- this one actually burst and crusted but it was subtle. most of the time they don't. and of course its hard to photograph. will also try enclosing original outbreak on cheat; head was harder to photograph. sometimes i think i hget both recurrent shginles and hsv1 since has feastures in common with both. Shoot having trouble with the photos- some other time