I have to thank this site for helping me in my recovery from cfs/fm

Discussion in 'Fibromyalgia Main Forum' started by jarjar, Apr 11, 2009.

  1. jarjar

    jarjar New Member

    It was this site that I read about a study in the immune support library several years ago that they did a study of cfs/fm patients from a support group and tested them for lyme.

    The results were that over 80% of the group tested positive for lyme with a good lyme lab.

    I hope that others please rule out lyme with an Igenix western blot and have a LLMD look at the results or discuss the results with the lyme members on this board.

    Please rule out everything before settling for a cfs/fm diagnosis. I wasted too many years of my life with the wrong diagnosis.

    God Bless you all
  2. ladybugmandy

    ladybugmandy Member

    jar..i am so happy to hear you are well...thank you for sharing this wonderful news!
  3. bunnyfluff

    bunnyfluff Member


    Thanks for posting! It is nice to hear from everyone that didn't deem us 'lunatics' and actually found out what was making them ill.

    I too, wasted way too many years with the 'wrong' Dx. I stop back from time to time now to see how many others have gotten Dx'd, but for the most part I have moved on. My questions and prayers were answered, and I have my life back.

    It will never be the same as it was long ago, but at least I know what I am fighting against.

    Lyme is a hard Dx to get, and even a harder thing to fight. I wish you all the best.

    God Bless,

  4. munch1958

    munch1958 Member

    I too am almost well. Much of the info I found on this site too. The library here is great.

    There used to be many lyme literate people here but most of them are gone. Posts like this one are NOT allowed on the main CFS/FM board anymore. I suspect this one will get removed for no other reason than Lyme being behind CFS & FM is being discussed.

    I agree with you 100% on the 8 out of 10 people with CFS/FM will test positive for Lyme disease. Many here are so desparate for a name for their very real symptoms. When they finally get that name they keep on clinging to it even though it's an incomplete diagnosis. There is always something MORE going on like vitamin and hormonal deficiencies, latent bacterial, viral and fungal infections, parasites and hypercoagulation.

    In 2006, I went to the Detroit FFC. They did a Lyme Western Blot as part of their infection panel. My test was overall negative but I had MANY positive bands. There should be NO positives on a test for spirochetes.

    In my case, Band 30 was IgM positive. Many LLMDs would like to see 30-31 together on the test. This would have made me IgM positive and IgG negative meaning my body is no longer capable of fighting off the bacteria or a chronic Lyme diagnosis.

    The doc there told me it wasn't Lyme so she wouldn't treat me for it. She hated treating Lyme infected patients so she wasn't open to the diagnosis. I've heard of about 30 people who were told the same thing at this FFC clinic.

    When they first told me it was Lyme I did believe the results because of 2 EM rashes and a funky hand rash that looked like ACA. Plus there is my hobby history.... gardening, tent camping, hiking, bicycling, and cross country motorcycle trips. We've always had pets either dogs or cats that went outside. It's very possible that they brought ticks into the house.

    When the FFC doc did the IDSA 180 and said it wasn't Lyme I sought the help of a great LLMD. I no longer have migraines, TMJ, asthma, costochondritis, joint pain, GERD or IBS, CFS, and FM. It is possible to feel better. When a doctor tells you to learn to "live with your symptoms" they are lying. No one has to live with this crud.
  5. Chootik

    Chootik New Member

    Nice to read this post from you.

    I haven't been here for a while.. glad you are doing so well.

    Just curious what protocol are you on now? Still on ABX or are you all done with that stuff?

    I'm on Anti fungal stuff for yeast. Done with ABX but might have to go back on to kill Bart.

    Anyways have a good one hon.