Going to LLMD Infectious Dr. What to expect??

Discussion in 'Lyme Disease Archives' started by doxielover70, Sep 9, 2008.

  1. doxielover70

    doxielover70 New Member

    Hi. I use to post on FM board and the chatroom.

    I have been dx twice with FM and recently had Western Blot IGG test. Was told negative but looked at the test result and band 41 was reactive.

    Much searching and researching online found a lot of info pointing to the fact that might mean lyme. Even though Dr. blew it off and says don't know what is wrong with you.

    Well quite frankly I am tired. Tired of fighting with doctors to find out what is wrong with me. Knowing deep down that there is something more than FM. I have had a hard time accepting that dx for some reason. In my opinion I think FM is a symptom of something bigger.

    I was exposed to tick 8-10yrs ago but at time was blown off as no lyme in Florida. Uh ok Lyme has been in Florida for at least 30yrs but ok. Have had so many strange symptoms that really never thought of lyme again.

    But really thats not true its been in back of my mind but no one would listen and thought lyme disease is not possible in Florida. Isn't it sad that we have to do our own doctoring beacuse no one else will.

    So anyway I am going to LLMD, who is a infectious dr, next week. What should I prepare. I got family medical history from my mother. Do I need to make a list of any symptoms for dr? I don't want to go in there and he ask me many questions and I will not be prepared and answer back to him I don't know. My mind isn't what it use to be its very hard for me to prepare lists.

    I guess I just need some guidance and very scared about what might be to come. The tests, the costs, the treatment if its lyme or tick related disease. And I just want to give this dr everything I can so he can figure out what is wrong with me. I want to be well. I want to get rid of these waves of fatigue and muscle weakness. I want to do things and be active again. Sorry for the rambling and thank you in advance for any guidance you more experienced guys can give me.
    [This Message was Edited on 09/09/2008]
  2. doxielover70

    doxielover70 New Member

    Thanks for taking the time to reply back to me. Just very worried about making sure I am prepared with as much info for dr as possible.

    I will come back and post what they find out. I am sure that I will be sent for more testings.

    I am not sure if I have a coinfection or not. My regular dr was done as soon as he saw negative on the lyme test. He just chuckled and said don't know what is wrong with you.

    Well I don't think its funny and I want to get to bottom of whats wrong with me. Again thank you for replying.
  3. victoria

    victoria New Member

    and the diff between LLMDs and the others is that they remember that lyme is not supposed to be based on a blood test alone, but on your 'clinical picture'. So a good history is an excellent start.

    Lyme of course is in Florida, and is in Georgia, and found in all states. My son was CDC+ 'even tho' we live in Georgia... my daughter also had Rocky Mtn Spotted Fever about 15 years ago, also supposed to be 'rare'. Gotta wonder what the odds are of that...! (Actually now NC has highest reported rate of RMSF)

    How rude & annoying that he laughed at you while saying he didn't know what was wrong! I've a feeling I'd have walked out without paying... or at least write a complaint to the medical board.

    good luck, let us know what happens!

    all the best,
    Victoria

  4. boscosmom

    boscosmom New Member

    from you all...doxie lover...good luck...you sound like me too...that annoying fms and cfs dx when you know there is something more.
    same test too...except i had a positive IFA and 31 too.
    i am on doxy now...and had had miracle days and then really bad and i get worried and sad and come on here toseek help and reassurance.
    ty all so much, chris