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Has anyone had their illness triggered by the cold sore/herpes simplex virus?

Discussion in 'General ME/CFS Discussion' started by veganmua, Oct 24, 2016.

  1. veganmua

    veganmua Senior Member

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    Background - I got gradually ill, with my illness slowly progressing from normal functioning, through moderate and finally to severe between 2009 and now. The only strange thing I can remember about my health from the time I got ill is a large patch of cold sores from my nose to my top lip on one side. It was there for about 5 or 6 months before it healed. I was ill with suspected swine flu in 2010, but had already been diagnosed with ME/CFS beforehand. In 2014 I had a major, full face flare up of cold sores, was on acyclovir tablets until a few months ago to keep them at bay. No improvement in ME symptoms while on acyclovir. Attached pic of 2014 cold sores to illustrate the severity.
     

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  2. purrsian

    purrsian Senior Member

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    I don't get cold sores (even if I accidentally kiss my fiancé when he has one), but I had a similar gradual onset to you. It makes it hard to tell what the trigger was, which is annoying.

    Have you been tested for antibodies of any of the big suspected CFS viruses like EBV? I tested positive for EBV but have no idea when I had it. While the herpes simplex virus may have triggered your illness, it could also just have reflected how run down your system was at the time. If your body was run down due to trying to fight off some unknown virus, then the herpes simplex virus celebrates and has a party on your face lol

    In saying that, I usually find that all my "seemingly unrelated" illnesses and symptoms closely correlate to my overall CFS symptoms. I'm sure a doctor would tell you it's unrelated to CFS, but CFS seems to do funky things to our immune systems. Also, while many people seems to be triggered by the main couple of suspected CFS viruses, there are plenty of circumstances where the trigger seems to be other viruses or other things that over-stress the system.
     
    Tammy, veganmua and Hutan like this.
  3. frederic83

    frederic83 Senior Member

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    I'm positive for EBV, and sometimes (rarely) have a small cold sore on the side of my lips. It is triggered by food, in my case, like gluten, cereals, or sugar mainly.
     
  4. frederic83

    frederic83 Senior Member

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    You can try to disolve lysine and apply it on your face.
     
  5. Webdog

    Webdog Senior Member

    Cold sores that erupt or don't erupt often precede a significant worsening in my symptoms. Until 15 years ago, these cold sores nearly always erupted. Since then, they tend to stay as sore bumps under the skin on or around my upper lip (occasionally in my nose).

    I've told many doctors over decades about this relationship between cold sores and my symptoms, but only in the past year has one taken me seriously.

    Edit: Cold sores did not initially trigger my ME/CFS onset, however.
     
  6. Hip

    Hip Senior Member

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    @veganmua
    Did you ever have a cold sore on your face or lips prior this large cold sore outbreak that appeared near the beginnings of your ME/CFS?

    If so, then that would indicate that you already had the cold sore virus (herpes simplex) in your body from years before, and that the eruption of cold sores that appeared at the beginnings of your ME/CFS was just a reactivation of this existing herpes simplex virus. In other words, you did not catch the herpes simplex virus at that time.

    However, you may have caught another virus at that time, which weakened your immune system, and allowed the herpes virus to reactivate. (Dr Chia found that the herpes varicella zoster virus often reactivates when people catch enterovirus infections, a virus linked to ME/CFS).

    This is a more likely scenario, because there is not much link between herpes simplex and ME/CFS (though herpes simplex is linked to fibromyalgia).
     
  7. vision blue

    vision blue

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    Am too tired to tell my story now - just joined this group and posted a message - but your title drew may attention because yes, my autonomic symptoms started with a recurrent herpes virus. like you, few will listen, especialy now that the sores rarely erupt. Do you also have autonomic symptoms? i have what appears to be overactivated/disregulated sympathetic nervous system with poundinh heart, bursts of tacycardia, blood pressure chagnes, temp regulation difficulties - its like alwasy being on speed. Also dizzy and with weird head sensations where my head feels like its flying all over. have also had vertigo.
     
  8. vision blue

    vision blue

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    Also, the ones on your nose and forehead remind me of where mine were that I hyopethised were affecting 2 cranial nerves that pass together through same region on route to brain - and that the virus had made its way up the nerves to the brain/CNS.

    Were your lesions tested to see if they were HSV1, 2, or seomthing else? am guessing since they cross the line they are not zoster, but if its dessiminated, it can cross midline. Mine were not tested because by the time i realized they should be tested, they no longer erupted in a way that generated fluid.

    I am enclosing a pic of mine on my chest when first got them. (note the pic may need to be rotated 90 degrees clockwishe) shingles1 feb 19 2014.JPG i had both chest and head on first presentation (along with dizziness from the very first). At first, i thought they were infected pimples, but then with the nerve pain, and other peculiar symptoms, we thought they were shingles. but later, thought perhaps Hsv1 (tested negative for antibodies to hsv2, so not that). Do they look to anyone like anything in particular?

    comment on enterovirus very intersting. Right before worseining symptoms that were autonomic, i had a mystery virus i caught from a doctors office with a week of fever, and a cough that lasted 3+ weeks. things spiraled after that, and wonder if it re established the herpes virus which had been fading before that.

    in addition to the fatigue of CFS, do you get autonomic symptoms with your CFS? any dizziness or vertigo?
     
  9. JuliaMaple

    JuliaMaple

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    I strongly suspect that there is a relation between the herpes type virus and my health troubles.
    My ever lasting fatigue started, and never ended, after having the cytomegalovirus when I was 16. (also from the happy herpes family)
    When my mother was pregnant of me, she had a bad case of shingles. As a child I had a strong sensitivity when it came to cold sores, I just had them very often. My immune system did not manage to keep it at bay.
    I also had chicken pocks several times when I was a child, the doctor was confused because that does not happen a lot.
    One time when I was older I had a cold sore outbreak on my lip, a couple on my cheek and inside my nose, which kept returning over and over again. And at the same time an odd outbreak on my ankle. It looked and felt the same, so I suspect that was herpes (on my ankle) too.
    I was feeling quite horrible/ill at that time. I had never seen anyone that had it on their leg before so I was worried I had HIV or something. Which turned out not to be the case of course.

    I stayed sensitive to cold sore outbreaks, and could not manage it at all. Until many years ago I discovered lysine, which has greatly helped me to reduce outbreaks to a tiny minimum, but I still very often 'come close' to having one. It always starts with mild fever, a sore throat, a sort of mild nerve pain in one cheek and horrible tiredness. When that happens I know its time to take a good dose of lysine. If I don't, I will feel a cold sore happening the next morning. If I do, the outbreak usually does not happen.
    I have 'never' understood why doctors have been unable to give me this simple advice.
    Lysine could have helped me ages ago if someone had told me about it.

    My guess is that I was already sort of weak as a child, when it came to the herpes virus, maybe because of the shingles my mother had. (just a wild guess)
    Then I got the cytomegalovirus as a teenager which permanently changed something in my system. After that I was never the same again.
    There has been no doctor however, that confirmed that this could be the cause. They seem to feel that herpes is just a mild annoyance and not much more then that.
    I believe its doing much more.
    I once asked an internist to try an antiviral, to see if it changed anything. But she refused.
     
    Last edited: Oct 27, 2016
  10. veganmua

    veganmua Senior Member

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    I'd never had a single cold sore until I got the massive patch in 2009. I've never actually had a mild cold sore, like the small red blister they show on Zovirax commercials. It's always been a massive patch of sore, tingling misery or nothing!

    I have postural orthostatic hypotension - often upon standing, my vision gets grey around the edges or completely goes and I feel very weak and faint.

    They were not tested, the only way we knew for certain it was cold sores and not a bacterial infection was because they put me on antibiotics and acyclovir - the acyclovir only lasted for a few days, but the antibiotics were a longer course. As soon as I took my last acyclovir, pill, the cold sores were back within 6 to 12 hours! And not mildly either! I tried to go off the acyclovir a few times over the course of two months, every time the cold sores came back within a span of a few hours to few days. I only came off the acyclovir early this year from 2014 - they haven't come back yet!

    Mine definitely looked different from yours in the picture, more widespread patchy erythema and blistering and less pimple/bite-like bumps. I never got them anywhere else on my body.

    I took lysine for a long time, but I don't take it anymore.

    @JuliaMaple I, too, was weak as a child. I think possibly the 'weak' ones can't fight off viruses well and end up getting ME and never truly recovering. I was 3 months premature and weighed 2 pounds 14 ounces at birth, then at one day old my lung collapsed. As a child, I loved being active and playing outside, yet I never seemed to be naturally as strong or fit as my peers. If it's any consolation re antivirals, acyclovir never made any difference to my ME while I was on it, it just prevented the cold sore explosions on my face. Maybe a higher dose could've made a difference? Until we find the exact mechanism which causes viruses to trigger ME, I guess we'll never know.
     
    Last edited: Oct 28, 2016
  11. vision blue

    vision blue

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    Some of us seem to have genetic succepitibility to certain herpes viruses like hsv. I know that my igg subclasss 3 is at the very low end of normal - and know of at least one study that says its that subclass you need to effectively fight herpes simplex. subclass 3 lasts much shorter than subclass 1, and both 1 and 3 trigered by herpes, but apparently 3 packs a stronger punch and is what is needed to keep it at bay.

    @julia maple - i have those kinds of doc frustrations too. Before i knew for sure that i coul dnot tolerate acyclovir and vancyclovir, i had to positively beg to get a refill. All sorts of circus flaming hoops i had to jump through. Lysine hurts my gut, like so many things, and have not had much luck with it. We have enough trouble w/o the medical world throwing flaming obstacles our way.

    my strange head sensations where it feels like bolts of electricity followed by head flying every which way and repeats itself every single time i try to fall asleep for the first 2 hours each night began with the strange chest blisters along with a strange pain at the upper bridge of nose and an unusual type of dizziness i had not had before. As soon as i took valcyclovir, they went away - but was unable to tolerate the valcyclovier. tried again, and again symptoms went away and again could not tolerate. a few weeks later as the neuro symptoms increased (along with the headaches- forgot about those- those started at the same time as the blisters, dizziness, nose pain, i actually think the head zap (and chest zap things were later as it progressed) , i tried a mixture of acycloiver and valcyclovir for 3 whole weeks, determined to get rid of it - this time took a week before it started working, and toughed it out for 3 weeks. went away for a little while - acan' remember how long- but then came back. by then though i had wrecked my esophogous from the anti virals and took a year to go back to near normal, though never completely normal.

    but now that lestions have mostly faded (more likely know i get a prodrom, and somtimes they pop up but then get reabsorbed ), docs believe me even less. I don't know if now antivirals would help, or if the neuro symptoms have progressed into a life of their own- possibly mediated by autoantibodies- just don't know (or an over reaction to the herpes virus).

    if i do have POTS, it seems to be closer to the hyperandergeric kind since my bp does not go down when i satand up and sometimes goes up (along with the tachy). having trouble distinghishing between some very simialr
     

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