FM/CFS Centers Inc, RECOMMENDS Lyme testing

Discussion in 'Lyme Disease Archives' started by cashmere2, Nov 4, 2007.

  1. cashmere2

    cashmere2 New Member

    Hi, I used to be a member of this board for quite some time several years ago. I left here believing that I had FM and am now returning knowing I have Lyme Disease. Since my diagnosis, 2 others in my family who also were told they had FM have been diagnosed with Lyme. Just last night a friend who has suffered from FM called to tell my family that she has now been diagnosed with Lyme, thanks to encouragement from one of my family. Her mother also has an FM diagosis and will likely be tested for Lyme in the very near future.

    As you know, and as many have probably already found out if they were tested that a negative is extremely common, almost expected. In my friends recent experience shegot a positive test after taking antibiiotics for something else entirely. Antibiotics often help to bring on a positive result.

    A couple of days before hearing her news I had read this article and wanted to bring it here in case some of you have not yet found a cause for your fibro symptoms.

    Here is the article:

    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.

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    If my memory serves me correctly, I can post a link here, but you should be able to find this yourself by just looking up Fibromyalgia and Fatigue Center.

  2. mollystwin

    mollystwin New Member

    This is very interesting. Thanks for posting. I was another who was diagnosed as CFS/Fm and really I have lyme disease. Can you post this on the FM board too? They really need to see this.

    The most interesting thing about this post is that the article is by FFC. I went to FFC for 8 months spent over $12,000 and they FAILED to diagnose my lyme. They refused to give me an Igenex test. THey will only give an Igenex test if you have some bands showing on the quest test. My twin sister was positive for lyme, so I figured I had it too, but they kept telling me I did not. So I changed drs and I got a lyme diagnsosis. I wasted so much time and money there!!!

    But it is good for others with FM to see articles like this. Everyone with FM or CFS should have an igenex test for lyme to rule it out.

    Thanks for posting!!!
  3. munch1958

    munch1958 Member

    I got the doctor's watered down version of the FFC protocol. Had I got the full 6 step approach I may have gotten somewhere.

    They failed to diagnose my Lyme disease too. My Quest WB showed bands 30, 41 and 58 positive with many INDs. I had the EM rash after a tick bite during a camping trip in 2001.