Got Lyme... AFTER getting M.E.

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Sep 10, 2009.

  1. karynwolfe

    karynwolfe New Member

    Just when you think you're free of the Lyme disease risk...!

    I got M.E. back in 2002 after some mutant virus attacked me. Four years later I went into a remission, and started to get all kinds of viral and bacterial infections. (For some reason, getting more frequent infections is a sign of improvement in M.E.--something to do with our immune systems no longer being chronically activated.) Feeling better, I took a trip out of state, and came back with a tick (Lyme is not common at all in my part of the United States). But I didn't have any symptoms at the time, so I didn't think anything of it. (And that little bugger was stuck on me for days without me finding it!)

    Thinking back on it, the only symptom I had -at all- was, a month later, I couldn't walk for a few days because of my right knee; I know now this is the joint Lyme most often attacks.

    Finally after about five infections past my time of remission, I relapsed. Fast foward about ten different triggers later (from more infections to surgery to over-exertion) and the M.E. came roaring back with a vengence. Every month I get worse, and have been for a long while.

    I thought back to the tick bite, and decided to trust my intution and get tested (regular Western Blot), and sure enough one band popped up. Just one! Not enough to be "positive" according to the CDC's method. But between the increasing symptoms I've had in the past year alone (primarily neurological, no signs of any other neuro disease, and I even had that classic episode of Bell's Palsy), the history of the tick bite, and the fact that I keep getting worse even when I SHOULD be getting better (because I do everything "right" for the M.E., yet all it does is progress -slower-; doesn't stop it at all), the band which showed up is just the icing on the tick-ridden cake (sorry for that analogy).

    I'm incredibly lucky, got a doctor to listen to me on the first try, handed him some treatment information I printed from John Hopkins (again, I'm in a state where Lyme is almost non-existant compared to other places) and am now on Doxycycline 100mg 3x's daily for 30 days: The perfect treatment to take care of my neuro and cardiac symptoms.

    I am not one of the people who have arthritis symtoms at all. That knee thing never happened again and my joints are fine. But I am one of the people who get fevers in the evening.

    And would you believe, in the midst of all this, the fibromyalgia which was triggered when I first got M.E. in 2002, actually went into remission two years ago? Yes, the FM went into a remission AFTER the M.E. relapsed and AFTER I got bitten by the tick... Maybe this is God's way of having mercy on me! LOL

    But, if life is done with this trick, I'd really like to stop collecting poorly-understood, infection-induced neurological diseases. Thanks! O_O

    All in all, I'm very much looking forward to just dealing with ONE disease instead of two that complement each other. I'm finally hopeful that I can stabilize and show real improvement, even if it's just a little! =)[This Message was Edited on 09/10/2009]
  2. Nanie46

    Nanie46 Moderator


    I am glad that you figured out that you have lyme.

    I have it too, along with other tick borne infections....for 21 years it was just diagnosed as FMS.

    The treatment that you are receiving is considered short term treatment using IDSA guidelines.

    I hope it works for you, but just be aware that it may not.

    Lyme literate MD's use long term combination treatment following ILADS guidelines....see link...

    Since you have chronic lyme, it is more difficult to treat. There are different forms of the bacteria, some that are more resistant to treatment. That is why it usually takes long term combination treatment.

    99% of Dr's do not know that. They do not know much at all about lyme. It is great that you got a Dr to listen to you on the first try. I fear though, that just when he declares you "cured" after 30 days....your symptoms will creep back in.

    Here is a good article that discusses the two standards of care for lyme....

    I urge you to go to on flash discussion....sign up for free like you did on Medical Questions...........create a new post asking any questions you want.

    There are many experienced and helpful people there who have lyme and associated coinfections....and it's a very active board.

    You can also find a Lyme literate MD on's Seeking a Doctor board.

    Many people with lyme also have other tick borne infections like bartonella, babesia and ehrlichia, among others.

    Have you been evaluated for those coinfections?

    See pages 22-27 of the first link for info about these coinfections.

    There is a lyme board here too, but it isn't very active.

    I can point you towards lots of other good lyme info if you want.

    I wish you all the best, and hope the lyme goes into remission.