stabbing/burning/shooting pains12 years no relief no diagnosis

Discussion in 'Lyme Disease Archives' started by Jeelzee, Jul 30, 2008.

  1. Jeelzee

    Jeelzee New Member

    For 12 years I've suffered from terrible shooting/burning/achy pains and sometimes numbness. I've had all the tests for MS and all come back negative. My symptoms all seem to be related to the quality & hours of sleep I get. Less sleep=intolerable pain to the point where I'd rather not live that day (no,I've never been suicidal) but it's just an awful existence. I'm 33 and have been to rhum dr who says it's fibro, but I don't have any trigger or tender points. All neurologists say don't know what it is. Physiatrist says need to exercise more. I've tried, paxil/elavil combo, lyrica, neurontin, ambien, lunesta, tramadol, trazadon, gabitril and nothing works.The only med that helps me sleep is xanax which I know can be addictive, but it's the only thing that helps me fall back asleep.

    I've been tested for Lyme at least 4 times which is always negative, but I've heard that there's a more specific test but my neurologist doesn't know what that test would be. Do you? At this point I'm so desperate. I was also diagnosed with Interstitial Cystitis (IC) of bladder 10 years ago and and have to pee all the time, but I've never had any pain with it. Last year a new urologist did a distention of my bladder and she sees no evidence of IC. I tried at least 3 drugs to help with frequency and nothing helped. I'm am so desperate and am losing hope. I’ve also been tested for vit B1,B12, D deficiency. I was low and not take supplements but still no relief.

    My life is absolutely miserable and I'm losing hope. Does anyone have similar story? Is it Lyme? I can't find any Lyme Literate MDs in Oregon. I'm in Portland. Does anyone know of any in OR?
    [This Message was Edited on 07/30/2008]
  2. vcamlin

    vcamlin New Member

    I've been through all of those, plus Oxycontin, Morphine, all muscle relaxers, Ultram, EVERYTHING.

    Taking higher dosages of Xanax relieved so much of my pain. So much.

    But now, 9 months later, I wouldn't consider myself addicted, but I do run out faster than I should because of tolerance.

    At this point though, pain relief first, dealing with addiction second. Benzos give me my life back at least 60%.

    But now my tolerance is high. So I have no clue what else to do.

    I'm not pushing, just telling you what stopped my stabbing burning pains, which are mostly in my neck.

    Also, have you been on ANY antibiotics? I've heard that it can bring out a positive result, not sure exactly why....

    Also, have you tried IgeneX? It's $200 but it might be money well spent. I don't have lots of money (used to before my illness!) but I went ahead and tested again through them on Tuesday, even though I got a positive through Lapcorp. My LLMD wanted to use them to have more accurate testing.
    [This Message was Edited on 08/01/2008]