interestingly enough.... my testing revealed lots!

Discussion in 'Fibromyalgia Main Forum' started by dlizard, Mar 12, 2003.

  1. dlizard

    dlizard New Member

    I've been to two new rheumies for evals and a fabulous psychitrist... who knew rigth away that I have soemthing more* than fibromyalgia as I believe most everyone here does.... both of the rheumies I saw recommended infectious disease consults.... This is the first time in over 25 years of dealing with this sh*t that anyone has ever said those words!!!! soooo being skeptical at this point of anyone bearing any resemblance to a medical doctor LOL>>> *seriously*.... I hired a new primary at the beginning of the year after my old one fired me LOL>>>> I was highly upset but this has turned out to be the best thing that ever happened to me!!!! anyway, to make a long story short... I have been diagnosed with not only fibromyalgia but now with LATE STAGE NEURO LYME DISEASE!!!!!!! Noone has ever bothered to test me... despite showing many a doctor many a rash.... I finally have a dermatologist that takes me seriously and when I told her the story about being worked up for it blood wise and presented with this rash ( like the ones I've been having off and on 25 years ya'll now... )... she biopsied it and it came back : positive reaction to arthropod bite.... but there was no bite! its left over lyme!!!
    here is my point::: don't give up.... keep looking and griping and complaining and doing whatever it is that you have to do to get what you need! I truely in my nursey heart feel that everyone here has some disease that causes this syndrome of fibromyalgia....tell em sticks and stone breaks bones but words can hurt me too....then just stick out your tongue at the bad ones LOL>>>>> there are way too many BAD doctors with little to now knowledge of the human body and its inner workings ( their speciality,right?) anyway.... I'll pop in and out to check your posts cause the fibro most likely won't go away but I'm off to IV land to see if we can rid me of this nasty infection that has been overlooked* for 25 years or so.....
    Good luck ya'll!!!!!
  2. AchyAchyBod

    AchyAchyBod New Member

    I'm so glad you persevered until you found out what else was going on with you. I hope things will go better for you!


  3. ohmyaching

    ohmyaching New Member

    We shall overcome some day....
  4. evileva

    evileva New Member

    if they would of found it 25 years ago when it first started you would have been cured! Did they say what your chances are now? If I were you I would make sure that my "other" physician new about this. LOL but then I'm that way. lol Good luck and I hope this takes care of everything.
  5. truthseeker67

    truthseeker67 New Member

    I am glad that you FINALLY got the correct dx. I am sorry it has been such a long time coming for you. What is your prognosis?

    I myself have been having symptoms about 4 years and recently have been dx'd with FM. However, I ran across a great article regarding LD that someone had posted on this board and it sounds EXACTLY like FM. So, I had my new rheumy double check my records for Lyme testing and he said there weren't any done - even though I had mentioned to the original doctor that my symptoms started on vacation in Pennsylvania. I also specifically told him that the area was a hotbed for deer ticks. Anyhow, I now await a Lyme test results and a panel of various other ones.

    Here is the link to the article on LD in case you or anyone else is interested.

    I hope you respond well to your treatment!

  6. pam_d

    pam_d New Member

    I have had several tests run for lyme (bloodwork, spinal tap) and I had no rashes or any symptoms other than vague neuro ones. I can't believe they overlooked some obvious signs for so long in you!! I'm upset for you that the dx was so long in coming that you missed early & even middle-stage treatment! I'm just so thankful they caught it now!

    I had a friend in CA who went through the IV treatment, good luck with that. And you are so right, we need to keep peeling back the layers of FM or CFS, always looking further for those underlying causes. I'm glad they found yours.

    Please keep everyone here posted from time to time. Hoping for a full recovery for you, or as near to that as you can get........