Discussion in 'Fibromyalgia Main Forum' started by maxsy1221, Dec 5, 2005.

  1. maxsy1221

    maxsy1221 New Member

    OK....who can test for that particular lyme test?? I mean what kind of doc does that?? Do the FFC's test for Lyme that way?? And if so. and it DOES come out there a cure?? Or a drug that could fix it?? I have 80% of symptoms!! Just wondering.......
  2. hopeful4

    hopeful4 New Member

    If you have Lyme, it can be treated. Some people may be "cured", for others their illness may be "managed".

    Selecting a doctor is important. They must be very informed about Lyme, as it is a clinical diagnosis. The test does play a part in that. There are also co-infections and conditions that exist as a result of the Lyme that must be treated, and the treatment can be complex for those of us who have had it undetected for a long time.

    I go to the Seattle FFC, and yes, they test for and treat Lyme. An alternative, or possibly preferred, is to see a LLMD, Lyme Literate Medical Doctor.

    You can find out a lot on lymnet dot org. Below I'll cut and paste you an article from the FFC.

    Take care,
  3. hopeful4

    hopeful4 New Member

    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue (From the Fibromyalgia and Fatigue Center)

    Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called “the great imitators” because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.

    Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as ‘brain fog’. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.

    Patients with chronic Lyme disease often complain of ‘strange’ or ‘weird’ symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.

    Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.

  4. dontlikeliver

    dontlikeliver New Member

    They sound like they are 'on the ball' - but not very confidence building that, if this is their own article, they cannot even spell tick (tic).

  5. morningsonshine

    morningsonshine New Member

    Can you tell me who your lyme litterate Dr. is in N. Wisconson? I live in N. MN, and have met with only sceptics.
    Thank You,
  6. ulala

    ulala New Member

    thanks for the great informational and inspirational post. I get my results tomorrow at the FFC in Los Angeles. I almost wish that I have it so there is something to treat.

    It must be wonderful to get a second lease on life and to be able to really appreciate it. Best wishes for your continued and complete recovery!
  7. maxsy1221

    maxsy1221 New Member

    Thank you all for your "outstanding" info! I too hope it's what I have as then it could be treated!! However, my fibro appeared after a severe fall. Is it possible the Lyme "forced" it out of me?? ((wishful thinking I suppose")). I have just been having soooo many bad and depressing days lately./ Get sooooo tired of being in pain. : ( I come here often in hopes of finding all good and positive feedback.....thank ypou for taking time to respond!!! maxsy

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