7. Other information on Lyme disease and fibromyalgia ************************************************************************ as of 4 May 1999 Fink at Large Another 'Great Impostor' Paul J. Fink [Clinical Psychiatry News 27(3):12, 1999. 1999 International Medical News Group.] . . . A well-known Pennsylvania psychiatrist nearly died last year of a combination of advanced Lyme disease, ehrlichiosis, and babesiosis. Early on, her blood tests were inconclusive. Because the presenting symptoms were only moderately troublesome, little weight was given to her history of gardening in a deer-infested area or to her history of bull's-eye erythema migrans -- the telltale manifestation of bites from the nymph form of deer ticks. Several physicians dismissed her suggestion of Lyme disease, denied further work-up, and attributed her symptoms to "stress." The patient's symptoms worsened; she developed fibromyalgic-like pain, cardiac effects, and multiple sclerosis-like neurologic problems. She grew weak and was forced to curtail her practice. Finally and fortunately, she found an astute general practitioner who listened carefully to her history and, without depending on the erroneously negative laboratory tests, made the diagnosis on his clinical observations. Intensive treatment was begun with intravenous and oral antibiotics. Blood and urine tests turned positive, not only for Lyme, but for ehrlichiosis, caused by rickettsialike organisms, and for babesiosis, a tick-borne red blood cell parasite treatable with Mepron. Slowly and arduously, she began to heal. . . . See complete article at: Fink at Large http://www.medscape.com/IMNG/ClinPsychNews/1999/v27.n03/cpn2703.12.01.html ----- From the Mayo Foundation for Medical Education and Research web site: Fibromyalgia Coping with the pain Originally published in Mayo Clinic Health Letter, October 1997 . . . Not a simple diagnosis "Fibromyalgia is difficult to diagnose. There isn't a test that can confirm or rule out the condition. In addition, many of its symptoms mimic other diseases, such as low thyroid hormone production, Lyme disease and rheumatoid arthritis." Fibromyalgia - Coping with the pain http://www.mayohealth.org/mayo/9710/htm/fibromya.htm Watch out for tick bites! A Lyme disease report March 27 1997 "Lyme disease can sometimes be difficult to diagnose. Its varying symptoms mimic other conditons, including viral infection, various joint disorders, fibromyalgia (muscle pain), or chronic fatigue syndrome. Not all people with Lyme disease develop the same symptoms." Watch out for tick bites! - A Lyme disease report http://www.mayohealth.org/mayo/9703/htm/lyme.htm ----- From the Fibromyalgia Association of Greater Washington web site: Understanding Fibromyalgia . . . Diagnosis "Currently, no diagnostic, laboratory test exists for FMS. For fibromyalgia to be diagnosed, other conditions that mimic its symptoms must first be excluded (i.e., thyroid disease, lupus, lyme disease, rheumatoid arthritis, etc.)." See complete article at: FMAGW General Information About Fibromyalgia http://www.fmagw.org/general.html ----- Subject: repost-an open letter to Alan Barbour Date: 07 Apr 1999 00:00:00 GMT From: jwissmille@aol.com (JWissmille) Newsgroups: sci.med.diseases.lyme Date: 15 Jun 1996 15:09:54 GMT An open letter to Dr. Alan Barbour: Dear Dr. Barbour: I have been reading your new book and felt that I must comment on some of your conclusions. My family has one of those "compelling anecdotal stories" that you refer to in your introduction. In fact, it was so compelling to me that I wrote a book about what happened. . . . "You mention that you have two sons in your book I wonder what you would do if one of your sons were afflicted in the same manner as my daughter. Would you really believe the response to treatment was placebo? Has placebo effect been studied and shown to last for months to years? Would you ignore the positive tests and latch onto a more acceptable (at least within the medical profession and one wonders if the reason for their new found acceptance is somehow linked to the relative inexpensiveness of their treatments) diagnosis of fibromyalgia or chronic fatigue when there is no test to diagnose either of these illnesses, no causative organism or agent known, and no good way to differentiate the symptoms from Lyme disease? In fact, I would like to have some figures on how many doctors are diagnosed with fibromyalgia because I have never heard of one who has. And a study by Croft et al in 1994 concluded, "Fibromyalgia does not seem to be a distinct disease entity."" . . . Yours respectfully, Karen Angotti See complete message at: repost-an open letter to Alan Barbour http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=643b01832ee42696,0&seekm=19990407161048.29257.00003523%40ng-fz1.aol.com#p ----- Magazine: HEALTH FACTS, October 1992 FIBROMYALGIA AND LYME DISEASE: ONE OFTEN MISTAKEN FOR THE OTHER Many people seeking treatment for and being diagnosed as having Lyme disease actually have an arthritis-like ailment called fibromyalgia, according to a news release from the American College of Rheumatology. Two new studies showing the extent of misdiagnosis were presented this month at the College's annual meeting. Lyme disease was first recognized over 17 years ago when several children living in Lyme, Connecticut, developed what was initially thought to be rheumatoid arthritis. The disease is caused by a coiled bacterium--a spirochete--called Borrelia burgdorferi (named for its discoverer, Dr. Willy Burgdorfer). The spirochete is carried to humans via tiny ticks that feed on animals, such as white-footed mice and white-tailed deer. It is not transmitted from human to human. The misdiagnosis of Lyme disease, which many experts now believe to be a common occurrence, has adverse consequences. For example, long-term antibiotic therapy, the standard treatment for Lyme disease, is not only useless to people with fibromyalgia, but also subjects them needlessly to the risk of side effects like superinfection of the vagina, intestine, or mouth due to an overgrowth of bacteria. In one study reported at the American College of Rheumatology meeting, only six of the 92 people seeking treatment for Lyme disease at the Rush Lyme Center in Chicago truly had the ailment. The other study involved 700 adults seen at a Lyme center in New Jersey; 77 of them actually had fibromyalgia. There are several reasons why Lyme disease is so difficult to diagnose. For example, the tell-tale red circular rash develops around the tick bite in only 75% of cases. Many of the symptoms--fatigue, mild headache, pain and stiffness in muscles and joints, slight fever, swollen glands- are similar to those of fibromyalgia and several other ailments. Furthermore, the blood test for Lyme disease is highly inaccurate. The Journal of the American Medical Association recently reported results of a testing program of 45 laboratories, which were randomly sent blood samples from people with and without Lyme disease. The investigators, Lori L. Bakken and colleagues at the Wisconsin State Laboratory of Hygiene, found a wide variation in lab performance. Between 4-21% failed to identify correctly the Lyme disease-infected samples. The false positive rate, that is, the erroneous finding of disease in healthy samples, was as high as 27%. The Wisconsin investigators concluded: "Our results indicate that there is an urgent need for standardization of current testing methodologies. Until a national commitment is made, blood testing for Lyme disease will be of questionable value for the diagnosis of the disease." The growing recognition of Lyme disease misdiagnoses has spotlighted fibromyalgia (formerly called fibrositis), a chronic ailment about which little is known. Some of its symptoms--muscle and joint pain, headaches, fatigue, sleep disturbances, numbness and/or a tingling feeling--are similar to those of arthritis. However, the standard arthritis treatments are ineffective for fibromyalgia because, unlike arthritis, it does not involve inflammation. The lack of inflammation means that fibromyalgia does not cause the damage to joints and the risk of crippling associated with arthritis. Fibromyalgia pain comes not from the joints but from adjacent ligaments, tendons, and muscles. The diagnosis is usually made on the basis of symptoms because there is no lab test to identify the presence of fibromyalgia. To make diagnostic matters even more complicated, a recent study conducted at the Tufts University School of Medicine in Boston found that some people have fibromyalgia triggered by Lyme disease. Of 287 people treated at a Lyme disease clinic during a three-year period, 22 had fibromyalgia associated with Lyme disease (Annals of Internal Medicine, 15 August 1992). The investigators, Hal Dinerman, M.D., and Allen C. Steere, M.D., of Tufts University School of Medicine and the New England Medical Center, found that nine of the people developed widespread musculoskeletal pain, tender points, dysethesias (impaired sensation), memory difficulties, and debilitating fatigue. Their symptoms lasted an average of 1.7 months after early symptoms of Lyme disease. The investigators noted that the signs of Lyme disease resolved with antibiotic therapy, usually given intravenously for two to four weeks, but the symptoms of fibromyalgia persisted. Doctors do not know what causes fibromyalgia or why childbearing-age women make up the majority of those afflicted. Drs. Dinerman and Steere summed up prevailing theories, noting that it can be triggered by various infections, thyroid disease, head trauma, or emotional stress. Although it is an old syndrome that has merely received increased attention in recent years, fibromyalgia often goes unrecognized by physicians. They are likely to dismiss sufferers as hypochondriacs and refer them to a psychiatrist after all available tests show that nothing is wrong. It is common for people with fibromyalgia to have other disorders, such as spastic colon, Raynaud's phenomenon, premenstrual syndrome, and headaches. In one study of people with fibromyalgia, half said their symptoms began after a flu-like illness. Many had been misdiagnosed as having chronic fatigue syndrome(CFS). Yet another study suggested that CFS and fibromyalgia may be one and the same. Fibromyalgia is classified as a rheumatic disease because it involves the body's connective tissues. Its old name, "fibrositis," was judged inaccurate because the suffix -it is implies inflammation, whereas- myalgia refers to muscle pain. Many people with fibromyalgia find that the pain is initially localized to one part of the body, such as the neck, and then becomes widespread. Some comfort can be taken in the knowledge that fibromyalgia is neither life-threatening nor degenerative. Complete remission occurs in about 25% of cases. Guidelines for Both Conditions Guidelines for the diagnosis of fibromyalgia were announced in 1989, and there are a variety of somewhat helpful treatments usually chosen according to the consulting physician's preference. Lyme disease, on the other hand, has an effective early-stage treatment, but uncertainties surrounding diagnosis have produced disagreements about when it should be initiated. New treatment guidelines for Lyme disease were published last summer. Lyme Disease The media attention given Lyme disease and its lasting painful effects has aroused public panic over tick bites. Lab testing is known to be unreliable, and untreated Lyme disease produces life- long debilitating symptoms that can progress to major cardiac, neurologic, and rheumatologic complications. Some physicians choose the conservative route, observing the individual following a tick bite and prescribing doxycycline or amoxicillin only after symptoms of Lyme disease appear. (Tetracycline and doxycycline cause permanent tooth discoloration when given at the crucial developmental stage, thus, these antibiotics should not be prescribed to children under the age of eight years or to pregnant or lactating women.) Unfortunately, early signs of Lyme disease are similar to symptoms of numerous other ailments, or they can be so minimal as to be overlooked completely. Because antibiotics can cure most cases of Lyme disease in its early stage, other physicians believe that the risk of delay is too great. Such physicians will prescribe the two- to four- week course of antibiotics immediately following a tick bite. But The New England Journal of Medicine recently published a new analysis which called this practice into question. The risk of acquiring Lyme disease is actually quite small, even in areas where the disease is prevalent, according to the new analysis conducted by David Magid, M.D., University of Colorado Health Sciences Center in Denver, and colleagues. They cite the only two available studies on the topic, both small in scale, showing that infection occurs in only about 10% of all people bitten by infected ticks. Preventive antibiotic therapy is not warranted in areas where the prevalence of infected ticks is less than 1%, concluded Dr. Magid. (See "What You Can Do" on the next page to learn about high- and low- prevalence areas.) Even in high-risk areas of the country, like Eastern Long Island and Westchester County, New York, only 5% of ticks carry the bacterium known to cause Lyme disease. Although Dr. Magid took issue with the "treat everyone" practice, his analysis determined that the risks of preventive antibiotics are probably outweighed by the benefits for people who have been bitten by ticks in one of these extremely high-prevalence areas. This formula approach to prescribing preventive antibiotics therapy was found wanting by Dr. David Dennis, coordinator of the Centers for Disease Control's Lyme Disease Program in Fort Collins, Colorado. In a telephone interview, he pointed out the gaps in Dr. Magid's guidelines. "What do you do with people who are repeatedly exposed to tick bites? Are you going to keep pouring antibiotics into them? Also, [the new analysis] didn't make clear to the public that it pertains to people with known exposure to deer ticks. Many people are bitten by ticks that play no role in the transmission of Lyme disease." "Our message is to check yourself daily and removed the tick yourself. If a tick is removed before it has been attached for 36 hours, you have very little chance of being infected, even if that tick was an infected deer tick, because they just don't transmit the organism until they've been attached and engorged for 36 hours." When asked about the role of preventive antibiotics for people in high- prevalence areas like Westchester County, Dr. Dennis said, "We can't generalize, but in most instances, `watchful waiting' makes sense to us, making sure the patient is well informed. In most instances that infection, if it is there, will make itself known and, if treated early, should be resolved with antibiotics without a problem." He advocates individual decision-making with a physician. "We don't have any hard and fast rules but we do know that risk of developing illness after exposure is pretty small." Fibromyalgia Fibromyalgia is described in the medical literature as a "syndrome," a label that usually signifies a major information gap. The word syndrome refers to a collection of symptoms, the cause of which is unknown. Rediscovered in 1977, fibrositis syndrome, as it was called then, began to generate a spurt of research papers, now totaling well over 60. It was not until 1986, however, that a consortium of research centers interested in fibromyalgia syndrome began a study to develop guidelines for accurate diagnosis. It concluded that the diagnosis of fibromyalgia can be made in the presence of widespread pain, combined with mild or greater tenderness when mild pressure is applied to 11 or more of 18 sites between the neck and the knees. It is not known why these 18 sites are tender or why pressure applied near them will cause no discomfort. The tender spots are very specific, which explains the difficulty experienced by people with fibromyalgia who try the pressure-point test on themselves. People with fibromyalgia have periods of deep sleep disruption; researchers found that when deep sleep is disrupted in healthy volunteers, they too develop extreme sensitivity in the same tender points. People who think they may have fibromyalgia should seek a consultation with a rheumatologist who is knowledgeable about the syndrome (see below). "Women who call us have been misdiagnosed as having everything from multiple sclerosis to schizophrenia," said a spokeswoman for the American College of Rheumatology. She said that certain therapies will work for some people and not for others. The numerous treatment possibilities can be described as somewhat effective, at best. Although corticosteroids and non-steroidal, anti-inflammatory drugs (Motrin, Advil, etc.) are often prescribed, these drugs are ineffective in relieving the pain of fibromyalgia. Acetominophen (Tylenol) and low- dose antidepressants, on the other hand, can be useful as painkillers. Remaining active is crucial, and aerobic exercise has been shown in studies to reduce pain and tenderness. An exercise program should begin slowly with stretches and low-impact aerobic activity such as fast walking. The pain often worsens temporarily once an exercise program is begun. Knowing that pain and sleep deprivation interfere with the ability to exercise, some rheumatologists advise a regimented sleep and exercise plan. What You Can Do For a lead on finding a rheumatologist knowledgeable about fibromyalgia, contact the American College of Rheumatology (ACR). This physician organization does not refer to doctors, but it will provide the public with a printout of the names of all U.S. rheumatologists who are involved in fibromyalgia research. Write to: ACR, 60 Executive Park South, Suite 150, Atlanta, Georgia 30329. Information on Fibromyalgia http://www.futureone.com/~hunter/ftext16.htm ----- The Complexities of Lyme Disease A Microbiology Tutorial: Part 1 by Thomas M. Grier, MS We are pleased to offer our readers an excerpt from the Lyme Disease Survival Manual 1997. Lyme Disease is a multi-system disease which can affect virtually every tissue, and every organ of the human body. It is a disease which can be mild to some, and devastating to others. It can cripple and disable, or fog your mind. It can affect men, woman, and children, and even your family dog. (1-5,7-19) You may test negative for the disease, and still have it, or test positive and be symptom free. Some will get symptoms within days of a tick bite, while others may have it for years before they are even diagnosed. Some Lyme patients are told they have fibromyalgia, chronic fatigue syndrome, MS, or some other disease of unknown origin. (See abstracts of the 1996 International Lyme Confernce) There are some studies which strongly support that the infection can be transmitted from mother to the unborn fetus, and may even cause still birth and has been implicated in some SIDs deaths. (MacDonald 20,45,52,53) See compelte series of articles at: med15 http://www.lymealliance.org/html/med15.html ----- Fibromyalgia: The Muscle Pain Epidemic - Is it ME by Another Name? (Part 1) 1995 Leon Chaitow N.D., D.O., MRO Senior Lecturer, University of Westminster "Other Conditions Which Are Extremely Common with Fibromyalgia Include: Allergies, chronic rhinitis (almost constant runny nose), easy bruising, night cramps, restless leg syndrome, dizziness (sometimes caused by the widely prescribed anti-depressant medication given to help the sleep problems in FMS), sleep apnoea (breathing seems to stop while asleep), dry eyes and mouth, bruxism (teeth grinding), extreme sensitivity to light (photophobia), premenstrual syndrome, digestive disturbances, viral infections, Lyme disease (resulting from tick-bite), itchy skin - with or without a rash, loss of hair, sensitive bladder, mouth ulcers, generalised muscular stiffness, 'foggy' brain (difficulty in concentrating and poor short term memory), dyslexia (wrong words come out or what is read is not understood), panic attacks, phobias, mood swings, irritability, a feeling of hands and feet being swollen without evidence of fluid retention." [Note: Almost all of the above are Lyme disease symptoms - see: Symptoms of Lyme disease http://www.geocities.com/HotSprings/Spa/6772/symptoms.txt ] See complete article at: Fibromyalgia: The Muscle Pain Epidemic - Is it ME by Another Name?- Part 1 - HealthWorld Online http://www.healthy.net/hwlibraryarticles/chaitow/fibromy/fibro1.htm or http://www.healthy.net/library/articles/chaitow/fibromy/fibro1.htm ----- From the College of Natural Sciences, University of Northern Iowa: Lyme Disease IV.Diagnosis "Called "The Great Pretender" - often misdiagnosed as MS, lupus, Lou Gherig's disease, fibromyalgia, chronic fatigue symptom, or Alzheimer's disease." See complete article at: Department of Biology / University of Northern Iowa http://www.bio.uni.edu/cei/lyme.html --------------- See: Lyme disease Misdiagnosed as Fibromyalgia - Index http://www.geocities.com/HotSprings/Oasis/6455/fms-index.html --------------- Prepared by Art Doherty Lompoc, California doherty@utech.net