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Shingles vaccine. Yes or no?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by BEG, Aug 20, 2011.

  1. BEG

    BEG Senior Member

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    I have a friend who is suffering horribly (hospitalized) with shingles. For those older than age 60, there is a vaccine available for shingles. What are the CFS specialists telling their patients regarding this vaccine? Has anyone had first-hand experience with it?
     
  2. determined

    determined Senior Member

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    Yes, shingles hurts a lot. I've had it many times. I asked my doctor (not CFS-literate) if he thought it would help and he wasn't too encouraging. He felt that it was only marginally effective. I wouldn't try it myself since I tend to react very unpredictably to vaccines. I'll be interested to see if anyone has tried it, and if so, what their reaction has been.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If you get shingles you need to jump straight onto an antiviral like famvir within the first 2 days, also need to try not to soldier on with the pain as this is a sign that the nerves are getting damaged and u need to get straight on pain management meds straight away maybe even an anticonvulsant type med like neurontin or lyrica even trycylic antidepressant like amitrityline which can help greatly with nerve pain. The earlier these strategies are used the less likelyhood of post herpetic neuralgia PHN which is it sounds like your friend has which are complications with shingles like ongoing pain for months or possibly years.

    cheers!!!
     
  4. WillowJ

    WillowJ Senior Member

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    there is some question whether ME patients develop immunity from vaccines, so getting a vaccine may not do us any good.

    I always get a bad reaction when I get a vaccine, and my personal choice is not to get any (when I asked my primary care doctor what to do about tetanas booster, she said I could even avoid that). Since there may not be any benefit, and I know there will be a potentially serious relapse.

    Not everyone will want to make the same choice I make. This is an individual benefit:risk decision.
     
  5. WillowJ

    WillowJ Senior Member

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    and I'm very sorry for your friend. I know someone with chronic shingles, and it's devastating. :(
     
  6. BEG

    BEG Senior Member

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    Thanks, WillowJ. I had a bad reaction to a flu vaccine. I know of a specialist who says "no" to that vaccine. I'm really hesitant to try the shingles vaccine.

    Heapsreel gives some very good medical advice for anyone who gets the shingles. The problem with my friend is she didn't realize she was getting shingles until she was out of the window for taking the antiviral, and so it progressed.
     
  7. BEG

    BEG Senior Member

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    Bumping. Does anyone have anything new to report? My doctor is pressing the issue of the shingles vaccine.
     
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I had Shingles when I was 25 years old. I caught it before there was even a rash. I got better quickly. I know when I am older I will not bounce back so quickly. I am not sure myself about vaccines. I cannot take mycins and vaccines re preserved with it.. I wish there was an easy answer!
     
  9. SOC

    SOC Senior Member

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    If the shingles vaccine is a live virus vaccine (and I think it is), then I think it would be contraindicated for ME/CFS patients. I have been told that it is better to get antivirals immediately if you get shingles than to risk the live virus vaccine. Sorry I'm too beat today to do the research, but you can probably find something more specific from at least one of our ME/CFS specialists.
     
  10. justy

    justy Senior Member

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    Hi, i'm a little confused by the notion of a shingles vaccine. Shingles can't be caught or passed from person to person. Shingles arises from a prior case of chickenpox. The chicken pox virus hangs out in your spinal cord your whole life and can be reactivated by severe stresses etc, then you get shingles. I know a lot of women in my are who have had shingles recently and they all had antivirals immediately and did very well (none of them had M.E) I don't think a shingles vaccine is even available in the UK.

    Even though i have lung fibrosis, i personally dont have any vaccines, not even flu ones as i feel they compromise my immune system rather than help it. I try to keep my immune system healthy as possible with good diet and herbs.
    All the best, Justy
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I forgot to add that I took an antiviral quickly before the rash came. I made it sound like I just got better. I did heal pretty quickly since I did know it was shingles even though no rash or redness was there.
     
  12. SOC

    SOC Senior Member

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    I believe that the idea is that as you get older, your body doesn't produce as many antibodies to chicken pox as it did when you were young, so the virus can reactivate as shingles. Theoretically, the vaccine is a very mild dose of the chicken pox (HHV-3) so your body starts producing more antibodies to keep the virus latent.

    The downside is that a dose of chicken pox (HHV-3) could stress your immune system, and/or reactivate other herpes viruses such as HHV-4 (EBV), HHV-5 (CMV), HHV-6 and so on. Not worth the risk, imo.

    When my daughter got her chicken pox booster for college, it reactivated EBV and HHV-6 which further challenged her immune system so that she caught H1N1 and got pneumonia. She went from ME/CFS remission down to about 4/10 functionality and unable to stay in college within a year. It was another 2 years, roughly, after that before she was back in remission.
     
    zzz likes this.
  13. justy

    justy Senior Member

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    Thanks SOC for the explanation - that makes sense. In the UK we dont vaccinate against chickenpox at all. I agree though that vaccinating with a live herpes type virus doesnt seem sensible in M.E patients who already often have reactivated viruses etc that their immune systems are trying to deal with.
     
    merylg likes this.
  14. voner

    voner Senior Member

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    beg,

    This question came up a while back at a meeting in Denver with dr. Susan Vernon of CFIDS. She replied that every expert she's ever asked that question about vaccines replied that yes, patients should take or get the vaccines.

    You might also try to imagine what getting shingles might feel like being on top of your pre-existing ME/cfs symptoms.
     
  15. SOC

    SOC Senior Member

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    I've had shingles on top of ME/CFS. It was bad, but I've lived through worse. Besides, no one is suggesting to just get shingles and do nothing. The idea is to take antivirals if you develop shingles.

    Look at it this way: Do you inject a mild form of a herpesvirus into your immune impaired body when you don't already have an activation or do you take an antiviral (which would also help suppress activation of other herpesviruses) only if you develop shingles? In other words, do you want to put a virus in your body just in case, or an antiviral if it becomes necessary? It's basically a matter of personal choice.
     
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  16. WillowJ

    WillowJ Senior Member

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    I strongly disagree with Dr. Vernon. Many ME/CFS patients have adverse reactions to vaccines. The question here is an individual benefit-to-risk decision for you personally (and may be different for each vaccine):

    is your specific chance of getting a flare, and the severity you think it might be, worth the chance of possibly preventing the specific disease the vaccine is preventing (should you happen to be exposed) and the severity of that particular disease and availability of other treatments.

    If one has had bad reactions in the past, the chance of having a bad reaction again is greater. If one has had vaccines without incident, the chance of having a bad reaction is less. If one hasn't tried it, one doesn't know and must judge only by the items on the vaccine and disease side.

    For you, BEG, since you already had a reaction to a flu vaccine, the risk portion of the benefit:risk ratio goes up (there is more risk for you). If your doctor cannot understand this, you might need to consider looking for a new doctor, but that's a bit complex depending on what other support and understanding your doctor has about other things related to your disease.

    One place where an official recommendation for being careful with vaccines can be found is at the Allison Hunter Memorial Foundation on the fact sheet. This states that patients may fail to 'seroconvert' (or produce antobodies against the organism being vaccinated against, which is the whole point of vaccinating - in other words, the vaccine may even not produce immunity). Unfortunately there are no footnotes; the citations are just all listed at the bottom, so it's difficult to figure out what study this is taken from.

    The new IACFSME primer may have mentioned that, too - I don't recall offhand.
     
    zzz, silicon and SOC like this.
  17. SOC

    SOC Senior Member

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    Another point -- the ME/CFS experts I've consulted about this topic make a clear distinction between killed virus vaccines, which they usually recommend, and live virus vaccines, which they don't.
     
  18. Crux

    Crux Senior Member

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    I don't have experience with antiviral meds. or vaccines for shingles, but I did have consecutive outbreaks for nearly 5 yrs. I learned from a very painful trial and error process that B12 was the active ingredient that would stop my outbreaks, and the post herpetic neuropathy. It used to be used for shingles until the advent of antiviral meds.

    B12 does have antiviral properties. But, it does't eradicate the virus. I'm doubtful that it is possible to completely destroy it, but I'm more than happy to minimize it.
     
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Don't let them pressure you into it, until you have done your homework. How does this vaccine work, if we already have the "bug", so shouldn't we already be immune? So why is a vaccine with the same thing in it better?

    GG

    PS How is your Vitamin D? Do you take LDN?
     
  20. BEG

    BEG Senior Member

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    Thanks Sally, SOC (so sorry for your daughter), justy, voner, WillowJ, Crux (interesting about the B12), and ggingues for helping me to make an informed decision. Who knows better than CFS/ME patients except the CFS specialists who seem particularly quiet on this topic.

    My doctor said the vaccine has been out for about 4 years and has a good track record. That may be all well and good for a healthy patient, but we are not. Also, I can't imagine whom Dr. Vernon was referring to.

    ggingues, I supplement vit. D with my calcium tablet. I haven't had it tested recently. What is LDN?
     
    WillowJ likes this.

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