Hi Jam338, Lyme is bacterial...

Discussion in 'Fibromyalgia Main Forum' started by victoria, Jun 22, 2010.

  1. victoria

    victoria New Member

    Just wanted to post a friendly correction - you had indicated Lyme was viral on the post about XMRV - it is bacterial, not viral.

    Nonetheless, YES, many feel that XMRV may prove to be the smoking gun that helps to make Lyme chronic.... so everybody I know who has Chronic Lyme is excited about all this news as well.

    all the best,
  2. amomwithsickkids

    amomwithsickkids New Member

    OMG I am taken aback by your family discussing "arrangements" I hope that this discussion itself hasn't set you back.

    I am a firm believer in "where there's life, there's hope" and "it ain't over til the fat lady sings" I am so sorry you are dealing with this because it seems to be quite a premature discussion. You are alive and so obviously vivid and engaged, so there is hope. And, unless some fat lady has sung, it ain't over for you.

    From what I recall, you are relatively young (50s-60s). What you've been through is awful, but OMG I hardly think you're at the point that "arrangements" need to be discussed. If I were in your shoes, I'd be pretty pissed off if someone brought up the subject of "arrangements"

    I personally avoid these discussions because I feel that I have more life in me and I'd rather focus on that, as opposed to exploring what will occur upon my demise. So perhaps I am prejudiced and in a pleasant state of denial. I do not want to discuss "the death things" until I'm at that point. I'd rather focus on life. Life is a gift that is much too short to waste time and energy on what will transpire upon death.

    Of course, it is prudent to reduce the stress level/work that must be done when our time comes. I am cleaning house and getting rid of things proactively, as we do not want our children to experience what we went through with our parents' stuff.

    Please hang in there.

  3. Nanie46

    Nanie46 Moderator


    Have you been tested/treated for Babesia and Bartonella?

    They are often found in Lyme patients and can really complicate the clinical picture.

    Pages 22-27 of this paper discusses the symptoms of these common coinfections...


  4. bunnyfluff

    bunnyfluff Member

    Sorry to hear you are doing so poorly :(

    kjm- Lyme, like a lot of other things can easily become chronic if it was never treated in the first place. just like the chicken pox virus lives in spinal fluid and lies around forever and becomes shingles in some and not others, lyme can very easily behave the same way. Like a lot of other things, it can lie in wait for the host to become a more opportune breeding ground, like when your immune system is already down.

    With lyme, the bacteria itself cloaks itself in your DNA so that it is not noticed by the immune system. XMRV is similar, from what I understand, in that it actually bonds w/ your DNA strand and becomes 'part of you'. That is why these things can be managed, but not gotten rid of.

    Hope this helps clear things up in your mind.

    Good health to all,
  5. karynwolfe

    karynwolfe New Member

    Hi JAM... Can you not move in with your family?
  6. Nanie46

    Nanie46 Moderator


    Sorry to hear that you had to stop your IV ABX treatment. Sounds like you had a herx though.

    For Babesia, you usually take Mepron (I took one tsp in AM and 2 tsp in PM.. some people take 2 tsp twice daily) with fat such as butter or other fat to help absorption.

    Yes, usually zithromax is used in combo, plus Artemisia or Artemisinin.

    My Dr also has me taking decaf green tea extract.

    Sorry that you have so much stress in your life.

    Just do the best that you can.

  7. Nanie46

    Nanie46 Moderator


    You are sincerely welcome!

    I think Dr B's paper "Advanced Topics in Lyme Disease" is probably the single most important paper that I have read.

    I continually go back to it for info.

    I wish you all the best...that's all I want for all of us......the best health, and happiness.
  8. victoria

    victoria New Member

    Treatment guidelines at ILADS:


    Hope that helps. Things keep changing/progressing...
  9. Nanie46

    Nanie46 Moderator

    Victoria posted those great links to the ILADS guidelines and on that first page there is a link to Dr B's 2008 guidelines which is..


    Yes, the 2008 guidelines are updated and should be used over the 2005 guidelines.

    The ILADS guidelines are more general and Dr B's guidelines talk more about specifics...but both are important and should be followed.

    I will add some other helpful sites here in case you haven't seen them before...