MUNCH i have a question(s)

Discussion in 'Lyme Disease Archives' started by lsaxton65, Aug 23, 2008.

  1. lsaxton65

    lsaxton65 New Member

    i'm sorry but this is a little long, but i wanted to give a little history.

    i saw a neuro a few weeks ago because my neuro problems became worse and it was very diff to function (along with more pain, fatigue constipation etc).

    i was shocked that he ordered a lyme test (along with others). i guess he did this because he asked me about tick bites and i have had several when i was younger (14-25+ years ago)

    i wasn't shocked when it came back negative because "don't pretty much all fm/cfs pat's tests in general come back normal"

    but i have been reading alot of info on lyme through your posts and websites and to me it sounds like a huge possibility.i a have found symptoms there that aren't included in fm/cfs...like nipple discharge, creaking popping joints, extremely stiff neck.

    however, when i went in to talk to neuro about all the test results, he refused to talk about the lyme. his exact words were "the result was neg....what's there to talk about". i mentioned the accuracy of lyme tests and he had no comment. the test was done through ARUP in utah.

    i don't think i will be going back to him. he did order some additional tests, including heavy metals. i WILL call to get those results and that's all i will have to do with him.

    meanwhile i have been seeing a DO for fm/cfs once a week for 4 months and i have had no improvement, just getting worse a little at a time.

    i went through the phone book of infectious disease dr's. here in texas i guess they won't touch you or don't believe there is lyme in tx. i didn't have any luck:-(

    i just happened to call my DO and ask the receptionist(she knows me quite well by now)if the dr treated for lyme. I just about fell over with excitement when she said "YES". but she sounded like it was a hush-hush thing(i don't know?) I made an appointment for tues aug 26.

    my questions are:

    do i let my dr address me in this "lyme" appointment or should i be insistant and direct with him?

    what questions should i ask? or need to ask?

    what information is most important for me to relay to dr?

    keep in mind that my dr is very open and he is always concerned with my progress, by asking me tons of questions about my symptoms with each visit.

    i hope you can help me with possibly getting some treatment. i am so curious to know what abx would do for me.

    thank you

    lisa
  2. bunnyfluff

    bunnyfluff Member

    I posted on the CFS board as well. There are a couple of Lyme Dr's in Texas. If you go to lymenet (dot org) they have a place to get info and referrals. You can PM me there as well.

    I live in DFW, and let me tell you~ There sure IS lyme in Texas!!! All 4 of my family members have it, and I NEVER pulled a tick off myself or my kids.

    Dr's just don't know, or are afraid to say the word. But help is out there!

    let me know

    Bunnyfluff


  3. lsaxton65

    lsaxton65 New Member

    thanks for the info bunny. i can use all the help i can get. i will certainly look into it and keep the info incase my DO doesn't work out. i am crossing my fingers that he does because he is only 20 min from where i live and i find that diff for me to drive sometimes because of dizziness.

    lisa
  4. mrdad

    mrdad New Member

    Other "evidence" of Lyme infection may be considered beyond

    just a blood test. Do you remember having been bitten by a

    tick? Many people cannot and have been diagnosed with

    Lyme without such a memory! I strongly suggest that you

    not be dissuaded by anyone from pursuing an answer to your

    malady! Be aware that there are basically TWO schools of

    thought on the subject. The "Conventional School" pretty

    much follows the CDC definition for Lyme and it's guidelines

    for "treatment". The "Alternative School" are more

    progressive! They are more apt to apply a much more aggres-

    sive approach to treatment(s). In your experiences, you may

    fine it necessary to be assertive in the pursuit of your

    goal to "wellness"!

    In a book I just concluded, the background to this contro-

    versy is explained in a fair and balanced manner. There is

    mention of the Texas Tick that MAY be involved in the dis-

    tribution of Lyme in your State. I strongly suggest that

    you find and read this book. BULL'S EYE: "Unraveling the

    Medical Mystery of Lyme Disease" J.A. Edlow, M.D.

    Best wishes Lisa,
    MRDAD
  5. Daisys

    Daisys Member

    I wonder, now that Lisa has seen the name of the non LLMD, if you should delete, or just use an initial.

    She may become one if she keeps treating lyme, or even if not, she may face the same pressure to stop.

    I feel very protective of the few who have the guts to treat lyme --they put their license at risk.

    Thank you in advance. :)
  6. victoria

    victoria New Member

    altho if I were you I'd also start educating myself about treatments. There are lots of good links in posts here.

    BTW, did you notice the number of posts received as shown on the main Lyme board?

    Don't know if it'll show up for you, maybe it will correct when I post this -- BUT - IT READ 39,569 replies!!!!! LOL!

    ... if that really happened on one afternoon, I wonder if it'd put PH down and offline for a while?

    good luck!

    all the best,
    Victoria