Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Immunologist recommending flu vaccines

Discussion in 'General Treatment' started by olliec, Jul 26, 2012.

  1. olliec

    olliec

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    I saw an immunologist (UK NHS) earlier this year, who ran a battery of tests, and their recommendations are:

    "His bloods today have shown an elevated IgA and IgM level as well as Pneumococcal
    and Haemophilus influenza antibodies below protective level pre-vaccination. I would therefore be
    grateful if you could vaccinate him with both Menitorix and Pneumovax to see if he is able to
    mount a good antibody response."

    Does this simply mean the tests show I've not been vaccinated, and they think I should be? Or does it mean something else? It sounds like the recommendation is designed to protect me from flu, rather than to in any way treat the MECFS.

    Also, is anyone aware of any risks with these vaccinations? I'm reluctant to have any because my immune system is out of kilter, and I'd hate to make it worse, but I appreciate that needs to be balanced with the risks of infection. The reading I've done suggests the side-effects are flu-like, but what about MECFS'ers?

    I'll be seeing my GP and discussing it but would be interested to hear others' views.
     
  2. floydguy

    floydguy Senior Member

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    Some have a different take but the only way I would take a flu vaccine is at gun point or in a medieval torture device.
     
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  3. SOC

    SOC Senior Member

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    Unfortunately, not all PWME respond the same to vaccines. The recommendation I've heard most from ME/CFS specialists is: get killed virus vaccines unless you've had a bad rxn to them in the past, but avoid live virus vaccines if at all possible.

    The statement from the immunologist might be interpreted to mean that s/he wants you to be given the vaccines in order to see if your body can produce antibodies. That would be a measure of your immune fitness and a useful thing to know in general. If your body can't produce antibodies, there's no point in getting any more vaccines, and it's probably not safe, either. If the immunologist is trying to test your immune fitness, s/he will want to run antibody tests again after you have had the vaccines. I'd ask your GP.

    As for getting vaccines, the issues to consider, as I understand it:
    1. Getting the full-blown illness can be really bad for PWME. Theoretically, the killed virus vaccine cannot give you a case of the illness, it just causes you to produce antibodies (if you can) to the illness. This should be good for PWME.

    2. Some people have reactions to killed virus vaccines that are not the result of getting the illness itself. It may be inflammation due to the immune response to the vaccine or an adjuvent in the vaccine.

    3. Live virus vaccines give you a very mild case of the illness which your body should be able to fight off and produce antibodies.

    These are not recommended for people with immune abnormalities because if your immune system can't fight off the mild illness and it could develop into serious illness. All you've accomplished is to give yourself the illness deliberately. :rolleyes:

    4. Some PWME with cooperative docs choose not to run the risk of reacting to the flu vaccine, but instead depend on getting antiviral meds from the doc at the first sign of flu. That requires prompt reactions on the part of the patient and doctor to catch it in good time for the antiviral to be of any use.

    5. People with only a small chance of being exposed -- housebound, no kids in school, that type of thing -- should balance the chance of being exposed against the chance of reacting to the vaccine.

    If the risk of exposure is low, the vaccine may not be necessary. OTOH, for those whose risk of getting the illness is high, a mild rxn to the vaccine is a small price to pay not to get the full-blown illness.

    FWIW, my daughter and I do get killed-virus vaccines because we only get relatively mild reactions to them. Also, she's in college and was living at home, so the likelihood of us being exposed to viruses is very high.

    OTOH, we do NOT get live virus vaccines. I don't know whether the Pneumococcal vaccine you mentioned is a live virus one, but when I did get one a while back, I had a substantial crash. I didn't have enough knowledge at that time to ask whether it was a live- or killed-virus vaccine.
     
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  4. Tito

    Tito Senior Member

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    This is what I understood from the immunologist's statement, and I would add that if your body can produce antibodies, then he/she will conclude there is no immune problem whatsoever. It looks someone is trying a little experiment on you. What I would suggest is to identify if this procedure is common practice, if so, in what suspected pathology. I've never heard of something like that for ME patients (which means very little, but over the years I've read a lot about this illness). If it were me, I would run away... (my sibling developed full blown ME after a flu jab)
     
  5. Tito

    Tito Senior Member

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    It does not start well:
    "Menitorix is not intended for use in adults. "
    Found here:
    http://www.medicines.org.uk/emcmobile/medicine/17189/spc

    That means to me, "folks, we've never tested this on adults, if there is a problem, we won't pay a penny"

    I would also question the fact that 2 vaccines would be used simultaneously.
     
  6. Tito

    Tito Senior Member

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    And even so, I would still try to negotiate ;)
     
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  7. Ema

    Ema Senior Member

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  8. Sparrow

    Sparrow Senior Member

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    The only ME specialist I've spoken with advised me strongly to avoid vaccinations at all cost (unless I specifically cleared it with him first and he for some reason thought the risk was worth it).

    I don't plan to be getting any.

    The Physician's Primer for ME says:
    ...Which isn't terribly helpful in giving you a firm decision, but might help some in weighing the risks.
     
  9. Sushi

    Sushi Senior Member Albuquerque

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    I had a very bad reaction the last time I had a flu vaccine (years ago). I would also check to see if it has
    thimerosal
    (mercury based preservative) in it, as many vaccines provided in multidose vials do contain it.


    Sushi
     
  10. Katherine

    Katherine

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  11. Snow Leopard

    Snow Leopard Hibernating

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    My illness was triggered straight after a vaccination so I've never had to have this particular conversation with a physician. ;)
     
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  12. Ian

    Ian Senior Member

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    "There is no evidence that any influenza vaccine thus far developed is effective in preventing or mitigating any attack of influenza. The producers of these vaccines know that they are worthless, but they go on selling them anyway." - Dr J Anthony Morris, former Chief Vaccine Control Officer and research virologist, US FDA
     
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  13. Dreambirdie

    Dreambirdie work in progress

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    If someone wanted to give me a flu vaccine, I would run as fast as I could in the opposite direction. Really! I'd be gone before they could finish the sentence. I am normally not capable of sprinting, but in that case I would make an exception.

    I have heard several horror stories from other MCS patients about severe adverse reactions from all the crap they put in vaccines--mercury, aluminum, not to mention the dead viruses--from who knows where? One older lady I know was talked into a flu and pneumonia vaccine, and she ended up bedridden for a year with crippling inflammation in her joints.

    Supposedly vaccines work well for some people, but I haven't met any of them yet.
     
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  14. Tito

    Tito Senior Member

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    It looks like the head of the post and its content are different. Menitorix is a combination meningitis C and Hib vaccine for 12-month old babies and Pneumovax is a pneumococcal vaccine that contains extracts from the most common types of Streptococcus pneumoniae bacteria. So the immunologist's suggestion is not about a flu jab, it's about other jabs.
     
  15. SOC

    SOC Senior Member

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    Thanks, Tito, for nudging us back on-topic. :)

    It sounds to me as if olliec's immunologist is trying a cheap (or perhaps more relevantly, acceptable within the NHS) way of evaluating olliec's immune function. Perhaps the question for olliec to ask is if there is a better way for this particular patient to get an immune evaluation without exposing him/her to the viruses?

    For example, are there other immune function tests that are allowable within the NHS? Maybe some of our UK members can chime in on this one...?
     
  16. Marg

    Marg Senior Member

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    Two weeks after the flu shot of 93 I had the flu, it was the last straw that pushed me into this. I also had vaccinations for living in Europe and allergy injections. I will never get another.
     
  17. SickOfSickness

    SickOfSickness Senior Member

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    I might have gotten sick from vaccination long ago, and maybe others in my family.

    I avoided flu vaccines most of my life but I got 2 in recent years. No trouble that I noticed. I also got a Tdap without noticing problems, and I think an MMR.

    I don't know how I feel about flu vaccinations. I hated when I got the flu and thought if only I got the vaccine, maybe I would have avoided all these bad days.
     
  18. Bunchy

    Bunchy Senior Member

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    Same thing was suggested to me - and I never went back to that immunlogist again as he clearly didn't have a clue :confused:

    I discussed what "low functional antibodies" meant with my GP and she said it was my choice whether to have the vaccines and I told her no - she was fine with that. She said the low functional antibodies just meant that we had not been exposed to that particular virus in the past.

    Sorry this might be confusing - I am tired tonight. Please PM me if you want more details.

    Love Esperanza c
     
  19. ukxmrv

    ukxmrv Senior Member

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    My guess would be that this is some sort of immune challenge as I have seen the same remarks on another UK patient forum. When they questioned the immunologist that is the response that they got. If I find the thread again I'll post some more information. Can't remember if this ever turned out to be another useful for the earlier poster though.
     
  20. Bunchy

    Bunchy Senior Member

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    It's a pretty dangerous "immune challenge" for a CFS patient, way too risky and one I will not be trying!

    Esperanza x
     

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