Im a big fat

Discussion in 'Fibromyalgia Main Forum' started by Misfit101, May 28, 2010.

  1. Misfit101

    Misfit101 New Member

    Liar! I knew from the caring and learned folks here to not take prednisone bc theres a possibility i have lyme disease. My dr had rx'ed the prednisone but i didnt take it. She was going to rx doxycycline but protocol said not to wo an active tick bite. I wanted that doxy cos i feel like doo and i figured it wouldnt hurt. Didnt know how to tell her that. So instead i told her that the prednisone made me sick (thats the lie part) and could i please try the doxy. I got my rx for the doxy! I hate the deception but you can only push too far. At this point im afraid of that prednisone. She did want me to take 1 pill a day instead of the 2 she originally wanted. Ive been warned...wont do it. I just hope the doxy returns me to the land of the living. Fingers crossed!
  2. victoria

    victoria New Member

    it will take a good while to feel better. I hope you've been reading about what the Lyme Literate MDs (LLMDs) recommend per dosage for doxy... most 'regular' MDs only give maybe 200 mg/day, it is NOT enough.

    And especially you need to know also about the Jarisch-Herxheimer Reaction (aka 'herx) - it was first seen when penicillin was given for syphilis (cousin to Lyme borrelia, both are spirochetes). Your symptoms will be exacerbated to start because of the die-off/release of toxins. There are some ways to help detox (post on Lyme board)

    The best thing you could do is find a good LLMD, seriously.... and start reading at some of the sites recommended...

    all the best,

  3. victoria

    victoria New Member

    PS-- I don't think you need to feel guilty at all, btw...
  4. Misfit101

    Misfit101 New Member

    Im still on the hunt for a llmd. Someone posted about one up by tulsa. Imagine my surprise when i clicked on the link and it took me to an old post from here! Back in 2005. So far all i can find are in the dallas area. Dont think i could make it that far. DH is supposed to get the name of the doctor from his 2 coworkers who have lyme. And theres no okla ticks w lyme. Riiight. Im not finished with this by a long shot! I probably wont herx since i doubt she rx'ed what is needed. Im having to choose between going to the library and printing out info or going to small sons ball game. The game won out. Why cant they just make this easier??? ETA...lady you know your stuff. Just called the pharm...100mgs 2 times a day for 7 days. I need to make a LLMD out of my dr!
    [This Message was Edited on 05/28/2010]
  5. kat0465

    kat0465 New Member

    Have 2 great LLMD's. if you can travel i can get the names for you.( can we post names on here??)
    Let me know
  6. Misfit101

    Misfit101 New Member

    I think you can post dr names. I cant travel far...2 hrs is my limit and even that is beyond difficult. Im in okla...and if there are 2 LLMDs in this state id sure like to know where they are. The info would be appreciated!
  7. karynwolfe

    karynwolfe New Member

    You may want to think about extending your "limit"... I had to go on a ten hour (round trip) drive and I was bedbound at that point. It was terrible and I almost didn't make it, but I pulled through; it was necessary... Have you gone to LymeNet? On their doctor's forum, someone will give you all the LLMDs in the surrounding area through PM!

    No, we cannot post doctor's names on here. :(

    About the Doxy: Do not pay attention to the information packet, you have to EAT SOMETHING WITH IT. MAybe even take it with your meals, just don't take it with dairy! You may vomit it back up, otherwise.

    And jamminhealth made a good point, when you're on long-term antibiotcs you need to avoid sugar and refined 'white' foods (white bread, white rice, white flour) and take a probiotic supplement (or at least eat plain yogurt daily, two hours after you take the antibiotic).
  8. kat0465

    kat0465 New Member

    karynwolf is right, they have a great list of dr's. if you havent been there yet just pretty much post about what your going thru looking for a dr thats close to you.

    they will send you a personal e-mail with an updated list, they are kinda secretive cause they say that people are out to get LLMD's so you have to be specific and tell them all about what your looking for and where your located, how long you have been diagnosed.

    good luck

    [This Message was Edited on 05/31/2010]
  9. Misfit101

    Misfit101 New Member

    I think ive been to every lyme site out there! At least it feels like i have. I thought you needed to join the flash discussion on lymenet to get a dr name. I cant join the flash discussion from my phone. I was finally able to access canlyme after some difficulties. Lots of info out there. For about 6 months (before the fevers and knee pain) i had migrating pain in my shoulders. To the point i couldnt use my arm. Dr dx'ed bursitis and wanted me to go for the shots. Im really glad now that im afraid of those shots. Knees and neuropathy are better but now cant use left arm cos of the shoulder. Im so confused with all these things going wrong. And the only instructions w the doxy were to take w plenty of water and not lie down for 30 mins after. Thank you for the warnings!
  10. Misfit101

    Misfit101 New Member

    Sorry for the double post...i can get only so much in before im outta room w this darned phone. Im eyeing a touch screen right now but they are lots of cash. I digress...TEN HOURS!!! Wow. And here i was sweating a possible 2 hr drive! I have severe (and i do mean BAD) back problems unrelated to fibro or anything else. I think a 10 hr drive would land me in the hospital. A 6 hr one did once. On the other hand being in the hospital might not be such a bad idea. Dont get me wrong...i want to get to the bottom of this and i WANT a LLMD. Im going to have to see if i can join lymenet wo having to use the flash discussion. And...if we cant post dr names whats with the sticky at the top of this page? I gotta tell you...its my personal belief that a lot of ppl are sick with lyme and dont know it or even have a suspicion of it. Lots of political game playing. Its ridiculous. Thank you both for replying. Im having lunch with a coworker of my dh who has lyme and sees a dr in tulsa. Hope its the answer to a prayer.
  11. Misfit101

    Misfit101 New Member

    Just had a long conversation with someone who has a support group. I get it about putting up dr names now. As far as one in okla im out of luck. The ones i had numbers for in dallas arent taking new patients. One outside of ft worth MIGHT consult with my doc by phone. Yeesh! No wonder some have to drive ten hours! At least the head of our dept of health is new and admits theres lyme in okla. Im such a newb to all of this. Its discouraging.