how many here were diagnosed many years later?,

Discussion in 'Lyme Disease Archives' started by kayann, May 9, 2008.

  1. kayann

    kayann New Member

    hi all,
    ive been thinking for the past 10yrs. that i have fm, but now after reading signs and symptoms of lyme, i think i have that instead. Infact i can now remember getting bit by something 10yrs ago, and it left that big circle on my arm. I did not do anything about it and did not think anything about it until now.
    I see my family dr. on wed. Ive read so much about labs, and I sure hope my Dr. sends me for right test.
    I live in northern Michigan.
    so, how many people here did not get tested until years later and how long did it take to start feeling well?

    thanks for listening,
  2. connieaag

    connieaag New Member

    My daughter was dx'd with FM when she was 11 by a Children's Hospital and told she would have to pretty much "deal with it" as nothing was proven effextive for treatment especially in children

    She had a negative ELASA when she became ill, but after seeing so much on the PH board, I had the WB done in January 2007. It was not CDC positive bur she did have many positive bands. Her PCP who is great treated her with Doxy in high doses and she felt better. Prior to that she had been on Minocycline for 18 months per the protocol. She would feel better on Abx, but then when she went off would be back where we started.

    Her pain mgmt. doctor really encouraged us to reopen her case and look outside the box. I told him about the bite she had with a bulls eye in June 2004 prior to becoming ill in September 2004. In May 2008 we decided to see a LLMD and she is one month into treatment.

    I always felt the bite had some connection, but was told since she was on 10 days of Abx at the time of the bite, she didn't have Lyme. Now we know differently. I think anyone with FM, especially a younger person needs to be tested for Lyme. The pain doc told us he does believe FM is real, but she definitely did not fir the profile of other patients he sees.

  3. wld285

    wld285 New Member

    No, I don't feel better. Have not yet gotten the proper treatment.

  4. bunnyfluff

    bunnyfluff Member

    w/ a FMS/CFS Dx, but I was sick longer. I'm not sure when or where I picked it up, but it has been Lyme all along.

    I am much better than a yr ago, but I still have a ways to go.

  5. justjanelle

    justjanelle New Member

    and even went to the doctor at the time for the bullseye rash, which he diagnosed as contact dermatitis and recommended cortisone cream.

    I was diagnosed with fibromyalgia in 2003, but after reading about so many on the FM/CFS board who were testing positive for Lyme, I got the Igenex WB and started Lyme treatment in late 2007. So that puts it at 18 years for me between bite and diagnosis.

    As far as feeling well, I'd say I've improved a bit. But it's only been 6 months or so of treatment for me, and I hope for more improvement as I continue.

    Best wishes,
  6. kayann

    kayann New Member


  7. munch1958

    munch1958 Member

    Bit in 1969 during trip to Ozarks. Had a odd hand rash.

    Bit again in 1974 after trips to both NY and MI. Had an EM rash on my leg which was diagnosed as "ringworm."

    Bit again in 2001. That tick bite almost killed me. It was diagnosed as a "spider bite."

    The Ancient Engine paper says most people get at least one tick bite per decade. I believe that because of my history of camping, hiking, gardening and cross country motorcyling.

    Be sure to get the Igenex Western Blot (78% accurate) both IGM and IGG. Don't settle for a Quest WB (30% accurate) or an Elisa test (15% accurate.)
  8. highcotton

    highcotton New Member

    My LLMD believes i was infected at some time prior to my actual illness, that the borreliosis and bart remained dormant until i went thruogh an extremely stressful period. who knows?

    Kayann, be sure to get the western blot with igenex. don't let your doc waste your money on the elisa test. good luck!