Discussion in 'Fibromyalgia Main Forum' started by CooBax, Jan 23, 2006.

  1. CooBax

    CooBax New Member

    Hey Hopeful,

    Me again...had a few questions...saw my neuroligist yesterday and she said it was not possible to have lyme and not know you were bit....she said at some point i would have seen a rash or bite....she also is sending me to the MS clinic in Halifax although she says there is no way i could have MS...she says she wants to close the book on MS so I can move on...did you get tested for MS?

    As for Lyme...did your symptoms come and go over years? Were you well enough one day to do some small exercise then crash the next day for a week? Any ifo u could send would be great...thanks

  2. CooBax

    CooBax New Member

  3. CooBax

    CooBax New Member

    Just looking for hopeful4
  4. hopeful4

    hopeful4 New Member

    Dear Lesley,
    First, I apologize for not remembering your whole story. My memory cells are not too reliable these days.

    My ND sent me to a neurologist in 2000 to rule out MS. I was very scared. I came back negative for MS, thank G-d. However, given my symptoms, either the ND or the neuro SHOULD have known enough to test me for lyme, but didn't.

    My symptoms did not really come and go. I just never recovered as expected post-illness and surgery. Yes, some days are and were better than others. However, overall, I am definately worse.

    I don't know how the system works in Canada, but I strongly recommend that you get in touch with some people there. If you have not already, please go to canlyme.com They can help you navigate the system, and find an LLMD (lyme literate medical doctor).

    There are many myths about Lyme Disease. In addition, many doctors, including neurologists, are not adequately trained in the most current information about Lyme. Your neuro is just not informed about the facts of Lyme.

    IT IS A MYTH that you must have known to be bitten or have had a rash. Over 50% of people w/lyme do not recall a bite and never had a rash. I am one of them.

    Lyme disease is a CLINICAL diagnosis. It takes into account your history, symptoms, labs, etc. Because it is a clinical diagnosis it is imperative that you find a doctor thoroughly knowledgeable and experienced in Lyme, that would be an LLMD.

    I strongly advise you to do your own research. You can find information at lymenet.org click on Flash Discussion. Click on Medical. Then at listing for Newbies.

    Also go to lymeinfo.net

    Good luck with everything. Don't every give up.

    Here are some important excerpts to start with that apply to your doctor’s opinion. You can get the entire report at the website listed:

    • Evidence-based guidelines for the management of Lyme disease. Expert Rev Antiinfect Ther 2004;2(1 Suppl):S1-13. [66 references]


    • Since there is currently no definitive test for Lyme disease, laboratory results should not be used to exclude an individual from treatment.

    • Lyme disease is a clinical diagnosis and tests should be used to support rather than supersede the physician’s judgment.

    Atypical Early Presentations

    Early Lyme disease classically presents with a single erythema migrans (EM or "bull’s-eye") rash. The EM rash may be absent in over 50% of Lyme disease cases, however. Patients should be made aware of the significance of a range of rashes beyond the classic EM, including multiple, flat, raised, or blistering rashes. Central clearing was absent in over half of a series of EM rashes. Rashes can also mimic other common presentations including a spider bite, ringworm, or cellulitis.

    Physicians should be aware that fewer than 50% of all Lyme disease patients recall a tick bite. Early Lyme disease should also be considered in an evaluation of "off-season" onset when flu-like symptoms, fever, and chills occur in the summer and fall. Early recognition of atypical early Lyme disease presentation is most likely to occur when the patient has been educated on this topic.

    New Chronic Lyme Disease Presentations

    A detailed history may be helpful for suggesting a diagnosis of chronic Lyme disease. Headache, stiff neck, sleep disturbance, and problems with memory and concentration are findings frequently associated with neurologic Lyme disease. Other clues to Lyme disease have been identified, although these have not been consistently present in each patient: numbness and tingling, muscle twitching, photosensitivity, hyperacusis, tinnitus, lightheadedness, and depression.

    Most patients diagnosed with chronic Lyme disease have an indolent onset and variable course. Neurologic and rheumatologic symptoms are characteristic, and increased severity of symptoms on wakening is common.

    Neuropsychiatric symptoms alone are more often seen in chronic than acute Lyme disease. Although many studies have found that such clinical features are often not unique to Lyme disease, the striking association of musculoskeletal and neuropsychiatric symptoms, the variability of these symptoms, and their recurrent nature may support a diagnosis of the disease.

    The Limitations of Physical Findings

    A comprehensive physical examination should be performed, with special attention to neurologic, rheumatologic, and cardiac symptoms associated with Lyme disease.

    Physical findings are nonspecific and often normal, but arthritis, meningitis, and Bell’s palsy may sometimes be noted. Available data suggest that objective evidence alone is inadequate to make treatment decisions, because a significant number of chronic Lyme disease cases may occur in symptomatic patients without objective features on examination or confirmatory laboratory testing.

    Factors other than physical findings, such as a history of potential exposure, known tick bites, rashes, or symptoms consistent with the typical multisystem presentation of Lyme disease, must also be considered in determining whether an individual patient is a candidate for antibiotic therapy.