So confused...Lyme or Fibro?

Discussion in 'Fibromyalgia Main Forum' started by WhitneyJ, May 10, 2011.

  1. WhitneyJ

    WhitneyJ New Member

    Sorry for the long post, I was just wondering if anyone else has had a similar experience (or similar confusion) to share, so here goes...

    My 10+ year medical history has been a nightmare, with different diagnoses depending on what each new doctor believes in. I was bitten by a tick when I was 10 (23 now), treated with a normal coarse of antibiotics, started having joint pain and breathing problems when I was 13, then psychiatric problems for years. Then I got mono and refused to rest (stupid overachieving teenager). Following that I struggled with every symptom under the sun (including actually being allergic to the sun!) for years, missing 80 days of school my senior year of hs. I was diagnosed and treated for chronic Lyme for a few short months, then when insurance refused IV antibiotics I was sent for 2nd, 3rd, and 82nd opinions during which it was "there's no such thing as chronic Lyme," a diagnosis of CFS with years of unsuccessful (and expensive!) treatment, then finally Fibromyalgia which I only have severe allergic reactions to all the treatments for. I spent my last few years of college refusing to seek treatment, and somehow those were the least stressful years of my life (I was still nearly debilitated but without the added stress of doctors and tests and side effects, I felt less like a lab rat and somewhat like a human being with some worth and dignity!)

    Now, years later, I'm the worst I've ever been, no social life whatsoever, my life is nothing but doctors, tears, and part time volunteer work. I'm seeing a LLMD (again!) in a few weeks and so confused. Is this all Lyme? Or am I grasping at straws? If anyone's had a similar experience, and had any insight or input I would really appreciate it. My head is spinning with research articles and symptom lists and blood results and I have no idea what to believe anymore. All I know is I'm miserably sick and cannot live my life this way.
  2. lbconstable

    lbconstable New Member


    Sorry for all of your pain! Yes, it could be all Lyme. It may be more than Lyme too. Or may have started with Lyme. Lyme, ME/CFS, Fibromyalgia, MS, etc. are all complex illnesses. They become more confusing because of the politics associated with the illnesses. If you have a good LLMD you'll get to the bottom of it, but it's a long road! Don't give up too soon. And be skeptical of any doctor that tells you chronic Lyme doesn't exist (or refers you to a psychiatrist!).


    Just saw a very informative film that you can probably find online, "Under Our Skin."
  3. Nanie46

    Nanie46 Moderator


    So sorry that you have experienced such a failure of the health care system.

    It is a very common story.

    Yes, your symptoms can be from Lyme. It is very likely that you have more than one tick-borne chronic infection though.

    Common sense tells me that a 10 yr old who was bitten by a tick, had the usual short, IDSA (Infectious Disease Society of America) course of antibiotics and then developed joint pain, breathing problems, and psychiatric problems, was probably grossly undertreated and not assessed for other infections like Babesia and Bartonella.

    Breathing problems after a tick bite often indicate Babesia infection.

    Psychiatric problems after a tick bite often indicate Bartonella infection, Babesia infection and Lyme.

    CFS and FM are very common diagnoses that Dr's give patients that describe their symptoms when the Dr does not know what CAUSED their symptoms and it is a cop-out.

    What you really need is a good Lyme literate MD (LLMD).

    You can find one on on Flash discussion.....sign up for on Seeking a Doctor Board.....Click on Post a New Topic...and create a post asking for a LLMD in your state.

    Then click on Forum Home or Questions and Discussions which takes you back to the Flash Discussion page.....from there, click on the Medical Questions Board and read posts and post your own questions regarding your medical history and symptoms. is a very fast moving lyme board with tons of very intelligent and helpful people.

    It is sad, but true, that 99% of Dr's follow IDSA guidelines for Lyme treatment and then thousands of people remain sick forever.

    Those same Dr's say there is no such thing as chronic lyme.....well there is!!!!!!

    I have chronic lyme because it was never diagnosed or treated at all when I first got sick.

    I am going to give you alot of information to is going to be up to you to do the research and find a LLMD....regular Dr's will not be able to help you....

    This first link is the "Bible" of Lyme treatment from ILADS (International Lyme and Associated Disease Society...the group that LLMD's belong to)...comprehensive symptom list pages 9-11...and info on Babesia, Bartonella, Ehrlichia, etc on pages 22-27....but read the whole paper.....

    The following is a very informative powerpoint presentation about the treatment of lyme and other tick borne diseases (don't be fooled by the word autism in the link)....make sure you look at pages 60-67...,_LIA.pdf

    I'll be glad to help you in any way that I can.

    I'm so glad you came here and asked these questions, Whitney. I will see you on where I am Dekrator48.

    Good luck!

    [This Message was Edited on 05/11/2011]
  4. Nanie46

    Nanie46 Moderator

    Up for Whitney