opinions of meningitis vaccine

Discussion in 'Fibromyalgia Main Forum' started by amomwithsickkids, Jun 23, 2010.

  1. amomwithsickkids

    amomwithsickkids New Member

    Hi everyone, would you mind giving your opinions regarding the meningitis vaccine? I want to know the good, bad and ugly! Thanks.
  2. AuntTammie

    AuntTammie New Member

    I don't know much about that one specifically, but I do know that some people believe that CFS can be triggered by vaccinations, and I also know that the whole purpose of a vaccination is to provoke an immune response....so for someone who already has CFS, any kind of vaccination can make it flare up badly
  3. elliespad

    elliespad Member

    I have not had ANY vaccines since having a SEVERE reaction in 1970 to Tetanus.

    Dr. Mikovitz thought vaccines COULD trigger CFS or Autism. I may not be saying this exactly, but is close.

    The XMRV virus lives in B or T cells (or both, I forget) So when you give a vaccine, you send your (B or T cells?) in your immune system into overdrive. If you have XMRV virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency.

  4. Gingareeree

    Gingareeree New Member

    if your health is already in a compromised state. My son in law,who is a quadraplegic,cannot receive any type of vaccine,however,my daughter and grandkids have to,because of my sil health condition. My grandson has had the meningitis vaccine a few times now, this one, in my opinion is worth the risk,because the illness is so deadly. (For young adults) We have an epidemic of meningitis up in Ft. Collins,Co. A bunch of hockey players,a few have already died from it. Oh,by the way,my son in law is in the condition he's in,I believe because he received a flu shot a few weeks prior to getting ill. It's a tough decision to make~~~Jeanne
  5. amomwithsickkids

    amomwithsickkids New Member


    My daughter had a flu vaccine years ago that affected her negatively...she became quite ill afterwards. As a result, I never had her take a flu shot again. Thankfully, her docs understand this. I am afraid that the meningitis vaccine will have the same negative effect.


    I completely understand why you avoid vaccines. My youngest child had a severe reaction to the first DTP shot (apparently due to the pertussis component) and has not had a pertussis vaccine since.

    Ten years ago I'd have thought that there was no relationship to vaccines and CFS or autism. Funny how ten years can turn around your thinking. I know so many kids who have been dx'ed with autism, or "autism spectrum disorders" Ten or fifteen years ago, I rarely heard about autism or autism spectrum disorders. Now it seems like every other family is affected by this. It's very troubling.

    I am very interested in xmrv, but not knowledgable. I hope at some point soon that this virus will be tested for routinely.

    Thanks for giving me more info on xmrv and vaccines. We have to make a decision as to whether to give the meningitis vaccine or not.


    Well, firstly I can't imagine what life is like for a quadraplegic. My hat goes off to him and your family, and I hope he is able to maintain his health. Makes sense given the situation that your daughter and grandchildren are immunized.

    Thanks so much for telling me about your grandson who has had the meningitis vaccine a few times. I tend to agree with your assessment that this one is worth the risk, because the illness is so deadly. I only hesitate because my daughter has already been through so much and I don't want her to suffer needlessly or have setbacks due to the vaccine. Like your SIL, my daughter became very ill from a flu shot.

    Gosh...it is very scary to hear that so many in your area have contracted meningitis, and that a few have even died! I'm guessing that those athletes who died were pretty darn healthy.

    You're right, it's a tough decision to make.

  6. sickofcfs

    sickofcfs New Member

    My daughter has ME/CFS. She has had all the dead virus vaccines without incident. That includes the meningitis vaccine, I believe. I agree with a previous poster that the meningitis one is important because the illness is so very, very bad.

    However, my daughter went out of ME/CFS remission after a live virus vaccine -- a chicken pox booster. It appears that it reactivated a latent HHV6 infection. :( Unfortunately, I was too ill to go with her to the doc. When my husband asked the doc if he was sure it was okay to give her the live virus, the doctor assured him it would not be a problem. Fortunately, my husband did remember that I'd previously refused to let them give her the HPV vaccine (because it is also live virus), and refused that one even though he couldn't remember why. ;)

    Since that time our ME/CFS doc has agreed that live virus vaccines are not a good idea with ME/CFS, but the others should be okay. As I understand it (but you should do your own research), the dead virus vaccines cannot cause the illness because they can't replicate. Live virus vaccines are weakened versions of the illness. It seems logical, then, that if your immune system cannot fight off viruses effectively, even a weakened one could be a problem for you. The risk, of course, is that you run into the full-blown virus somewhere and get it anyway....

    Evidence is good that most vaccines are advantageous, but there are certainly rare exceptions. Our family's best shot at the most reasonable course is to get all the vaccines except for the live virus ones.

    Incidently, we'd have to think long and hard about passing up the HPV vaccine if we weren't confident that there is, at present, no need for her to have it. It will be a more difficult decision a little farther down the road.
  7. sickofcfs

    sickofcfs New Member

    You might want to consider not giving multiple vaccines at once, although this is common. If your kiddos do have a reaction, it is likely to be milder and you'll know which vaccine or classes of vaccine to avoid.

    Do you have an ME/CFS doc? Have you asked him/her this question?
  8. amomwithsickkids

    amomwithsickkids New Member

    I appreciate your input.

    DeterminedOne, nice to run into you too :) Everyone who answers adds variety to a thread! I appreciate your input.

    sickofcfs, thanks for your replies. We also say no to live virus vaccines and have since the kids were little (just had a bad feeling about it). And the kids will never have a flu vaccine again either (eventhough I think that vaccine is not live), since there was an extremely bad reaction to it.

    My daughter too was dx'ed with CFS, and later on with Lyme and Babesia.

    We have a few docs. One was on the fence about the meningitis vaccine and asked us to weigh the pros and cons. The other two (knowledgable about CFS and Lyme) recommended that she get the vaccine.

    We have been building up her immune system, and for the first time in a few years, her "natural killer cells" are in the normal range. So I now feel comfortable having her get this vaccine, especially given how serious and deadly meningitis can be.

    I don't recall whether we did the HPV vaccine (hepatitis?), but we did not do the gardasil vaccine. Even the pediatrician (who is allopathic but also practices naturopathic medicine to a degree) said to not take the vaccine as it was too new.

    We now have the kids' titers tested before giving them booster shots. If they're already immune, what's the point of a booster? We had my daughter have a measles booster shot because she had no immunity to measles. Thankfully, she didn't have any ill effects from this. All her docs agreed this was necessary.

    I also agree that giving multiple vaccines at the same time isn't a good idea for the very same reason. I want to know which vaccines cause reactions, so from now on, one at a time.

    My daughter also had extremely high HHV-6 titers and was on a few anti-virals. She was within the subset of patients with CFS whose CFS was caused by Lyme Disease and coinfections. After a long round of treatment for Lyme, her HHV-6 titers are now normal. The antivirals had little to no effect for her. BTW, has your daughter been evaluated by a LLMD? If not, I strongly recommend that she is. Check out the Lyme board for more info. Also, check lymenet.org You can sign up and ask your own questions on the flash discussions. It's a great resource.

    Best of luck to you and your daughter. I hope she feels better soon. It is such a long, hard road.

  9. sickofcfs

    sickofcfs New Member

    My daughter is showing improvement on Valcyte, for which we are very grateful. Our ME/CFS doc says no other antiviral works for HHV-6, so if your daughter didn't get Valcyte, that might explain why she didn't get a response. Just a thought. Wonderful that her HHV-6 titres are now normal. Does your doc think that treating the Lyme allowed her immune system to deal with the HHV-6?

    Yes, we were fortunate to be evaluated by a LLMD and, thank goodness, don't have Lyme. I'm glad to hear your daughter has had success with her Lyme treatment; not everyone does I hear.

    Gardasil is the HPV (Human Papilloma Virus?) vaccine. We're putting it off as long as possible. I agree that it's too new. I'm hoping for some improvements in the vaccine before we get to the point where we think she needs it. ;)

    What are you thinking about XMRV? Are you planning to test for it some time this year? We're considering it when we're a bit more confident that the test is reliable. Fairly soon, I hope.

    Best of luck to you and your daughter, as well. It's painful watching your child suffer with this illness, isn't it?
  10. amomwithsickkids

    amomwithsickkids New Member

    Well apparently we are on the same page with the gardasil vaccine! I forgot that it's HPV (head usually spinning).

    I am very happy to hear that your daughter is showing signs of improvement on Valcyte. Your doc is right...no other anti-viral works on HHV-6. My daughter was on Valcyte for 6 months. We saw a bit of improvement, but nothing to write home about, and she was pretty much just as sick as she was pre-Valcyte.

    I definately think treating the Lyme and taking supplements to strengthen her immune system helped get rid of the HHV-6. She is still on valtrex tho, and tried to come off it, but developed a funky rash. Valtrex has kept the funky rash at bay and I think it's a very useful med.

    When XMRV testing becomes available (and covered by insurance!) I would like to get my kids tested for it. I think we need to explore every possibility to determine whether it's a possible culprit to these illnesses. Wouldn't it be great if XMRV was the smoking gun?

    I am glad to hear your daughter was evaluated by a LLMD. Not everyone is able to eliminate their symptoms with Lyme treatment. But so many have coinfections and other viruses, so unless you're being treated for all of them, it's hard to tell what works. I also think (after 4 million hours of research lol) that building up the immune system is critical. There is lots of info on lymenet on that.

    I won't be back here for a bit b/c of a much-needed vacation, but will check in when I get home :) In the meantime, best to you and your daughter.

  11. simpsons

    simpsons Member

    really bad reaction to vaccines the me association has a survey results up for vaccines that triggered me/cfids hep b was the worst

    check out the canadian guidelines for advise they mention vaccines causing relapse

    you may be able to find more natural vaccines the breaksphere hospital does natural ones with out toxic metals you could try them and ask where in states you can get these and if they have any advise

    depends on contacts she will have though the immune stimulant can totally over stimulate the immune system

    as i had multiple vaccines and they took my illness to another level i cannot recover from i would never have anther one ever

    maybe a qualified medical herbalist could be of use and give some help to limit damage if you used natural vaccine without metals etc