Master Symptom List for CFS, FMS, CMP & Lyme Disease
Melissa Kaplan, The Carousel Network, May/June 2003
As research continues into chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS), chronic myofascial pain (CMP) and chronic Lyme disease, the differences between these putatively different disorders is blurring.
While the organism responsible for causing the disease we in the United States call Lyme disease (borreliosis) was discovered twenty years ago, researchers, mostly underfunded private researchers in labs around the world, continue to subject various bodily substances harvested from people meeting the clinical diagnostic criteria of people with CFS and FM to try to find any unique markers, genetic or microbial, that may cause these illnesses. Why some people who suffer physical trauma, as from auto accidents, go on to develop FMS or CMP, and why others don't, is another of life's mysteries still to be teased out.
What we do know is that rare is the patient who meets the diagnostic criteria of just one of these diagnoses. Far more common are people who meet the definitions of two or more of these diagnoses. We also know that those who meet the diagnostic criteria for these diagnoses may not experience every known symptom for each diagnosis. (Okay, so it often feels like we have every symptom, all at the same time, but fortunately for most of us, the numbers and severity/intensity wax and wane as the years go on.)
There are many different symptom lists for the different disorders. They are usually found in disease-specific website or books, but rarely do they appear all together, co-mingled. Several years ago, I compiled a combined CFS/FMS symptom list, publishing it in this newsletter and making it available online at my website. This new Master Symptom List takes the old list one-or two-steps forward by including symptoms for CMP and Lyme.
A Note on Gulf War Illness (Gulf War Syndrome): It should be noted that, with the exception of birth defects attributed to GWI, the symptoms for GWI are the same as those for CFS. It may ultimately be found that differences in GWI may be attributed to what actually triggered the illness in the individuals so affected: exposure to chemicals (including leaded fuel exhaust and oil fires), vaccines, and other substances the armed forces serving in the Gulf were required to ingest or have injected.
A Note on Lyme Disease: It is estimated that 30-50 percent of acute Lyme disease patients develop chronic Lyme (chronic borreliosis; neuroborreliosis). That is, despite antibiotic and other treatment, the Borrelia burgdorferi organism remains alive and well, periodically causing a worsening of symptoms or causing new symptoms to appear. Two-thirds of those bitten by an adult tick or tiny tick nymph never even know they've been bitten, and fewer than 50 percent of those finding ticks or nymphs feeding on them develop the "classic" bull's-eye rash that the CDC stipulates as one of its diagnostic criteria; many people with Lyme never exhibit any type of rash.
There are over 300 known strains of Bb and at least six genotypes, increasing the difficulty in testing people for its presence. This is compounded by the fact that the majority of public health and commercial labs such as Quest Diagnostics, LabCorp, Unilab, etc., use a hierarchy of tests established by the CDC and followed by the AMA. The first of test to be done, the ELISA, is known to miss the organism in the samples tested. Only when this less-than-accurate ELISA is positive is a second test, the Western blot, ordered. Since these labs use the Centers for Disease Control & Prevention's epidemiological criteria, which even the CDC says is not to be used for diagnostic purposes, thousands of people each year who get negative ELISA and Western Blots are told by their doctors that they do not have Lyme, when in fact they do. Many of those who go on to develop chronic Lyme do so because of not getting properly diagnosed right away, or not getting the appropriate treatment (too many doctors still prescribe too-short a period of antibiotics). Others keep testing negative for the disease because the tests used do not detect the strain they have, or the Bb is in one of its many presently undetectable morphs.
Over the past several years, as independent labs such as IgeneX and MDL have developed more sensitive tests for Borrelia and other tickborne diseases, an increasing number of people who were originally diagnosed with CFS and FM are turning up positive for Borrelia and, frequently, one or more of the other tickborne diseases. Others who are seronegative for Bb (getting false negatives on tests) respond to appropriately aggressive antibiotic therapy, and may later show positive on the Western blot IgM (early or reactivated infection) and/or IgG (chronic or ongoing infection) tests, despite negative ELISAs and earlier Western blots.
Note on Symptoms: Many of these are symptoms common to other diseases.
Getting a proper diagnosis for CFS, FM, and CMP is as much ruling out
other diseases (including proper testing and assessment for Lyme and other
tickborne diseases) as it is looking at the clues in dozens of tests and
the actual physical exam.
For more information on Lyme Disease, please visit the Lyme Disease: An exercise in nailing JellO® to the wall information and resource site.
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