3. Doctors on Lyme disease and fibromyalgia ************************************************************************ as of 4 May 1999 12th International Conference on Lyme Disease and Other Spirochetal and Tick-Borne Disorders Day 2 - April 10, 1999 Differential Diagnosis in Lyme Disease Brian A. Fallon, MD Two presentations today addressed the overlap that exists between similar disorders — one talk focused on diagnostic distinctions between fibromyalgia, Lyme disease, and Gulf War syndrome; the other was devoted to Chronic Fatigue Syndrome and Post-Lyme Disease. Dr. Sam T. Donta of the Boston University Medical Center discussed fibromyalgia and Lyme disease, noting the increasing awareness of the similarities and differences between chronic Lyme disease and other chronic multi-symptom disorders (CMSDs) such as fibromyalgia, chronic fatigue, and Persian Gulf War illness.[1] Still, since all are characterized by fatigue, musculoskeletal pain, and neurocognitive dysfunction, discriminating one from the others is often difficult. Historical Perspectives In the early 1900s, fibromyalgia was referred to as "fibrositis". By the early 1990s, the term "fibromyalgia" began to be used more widely. Current epidemiologic studies indicate approximately a 0.1% to 0.2% incidence of fibromyalgia. . . . Challenges in Differential Diagnosis The diagnosis of these CMSDs relies largely on clinical criteria. Problems emerge given the non-specific nature of many of these symptoms; even in fibromyalgia, elucidation of tender points is not always reliable. Laboratory testing is of primary use as an adjunctive tool in clinical assessment. . . . See complete article at: Differential Diagnosis in Lyme Disease http://www.medscape.com/Medscape/CNO/1999/lyme/Story.cfm?story_id=530 ----- From the American College of Physicians-American Society of Internal Medicine web site: To the Editor: After reading Reid and colleagues' report (1), I came away with a feeling of "Enough already!" The authors' stated objective was to identify the complications of patients who had been inappropriately diagnosed and treated for Lyme disease. Did any of the authors also evaluate patients in the Yale University Lyme Disease Clinic during the study? The stated objective would certainly affect the physicians' objectivity in evaluating patients' Lyme disease status. What data show that continued antibiotic therapy does not help with the fatigue-arthralgia-myalgia syndrome? In my review of the literature, the only prospective study evaluating patients with post-Lyme disease fibromyalgia-like syndromes and their response to appropriate courses of antibiotics for Lyme disease was an observational study involving 15 participants (2). An intriguing finding was that 10 of 14 (71%) of their patients who received antibiotics responded and then relapsed after antibiotic therapy was stopped. Why was this interpreted as an antibiotic failure or simply a placebo effect? Perhaps these patients did not receive the right amount of the right antibiotic. In a recently published study, albeit a retrospective and observational one, patients with similar fibromyalgia-type symptoms after Lyme disease seemed to be helped by prolonged tetracycline therapy (1 to 11 months) (3). Obviously, there is a lack of randomized, controlled trials of antibiotics for fibromyalgia-like syndromes complicating Lyme disease. . . . Clare L. Cherney, MD Hospital of St. Raphael New Haven, CT 06511 References 1. Reid MC, Schoen RT, Evans J, Rosenberg JC, Horwitz RI. The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study. Ann Intern Med. 1998;128:354-62. 2. Dinerman H, Steere AC. Lyme disease associated with fibromyalgia. Ann Intern Med. 1992;117:281-5. 3. Donta ST. Tetracycline therapy for chronic Lyme disease. Clin Infect Dis. 1997;25(Suppl 1):S52-6. 4. Logigian EL, Steere AC. Clinical and electrophysiologic findings in chronic neuropathy of Lyme disease. Neurology. 1992;42:303-11. 5. Rahn DW, Malawista SE. Lyme disease: recommendations for diagnosis and treatment. Ann Intern Med. 1991; 114:472-81. See full text at: LETTERS: Overdiagnosis of Lyme Disease, Annals 1 Nov 98 http://www.acponline.org/journals/annals/01nov98/letter3.htm See original article full text at: The Consequences of Overdiagnosis and..., Annals 1 Mar 98 http://www.acponline.org/journals/annals/01mar98/overlyme.htm ----- Letter to the editor by Joseph J. Burrascano, Jr., MD from The Journal of the American Medical Association Dec. 8 1993 p.26829(2) To the Editor.--The article by Steere et al (1) on the overdiagnosis of Lyme disease has caused a great deal of concern and anger among physicians and patients alike. Lyme disease is a clinical diagnosis,(2) for it is the patient's histories and symptoms that are the criteria on which the diagnosis is made. This fact is discounted by the authors, as are results of serologic tests done elsewhere. However, the authors obviously lend great weight to their own test, despite well- documented awareness of the unreliablility and variability of serologic test results.(3) Indeed, there is no proof that their laboratory is any more accurate than the many others tested. Their own T-cell proliferative assay, used on some of their patients here, misses 55% of confirmed cases. (4) My experience in a practice that serves as a referral center for thousands of patients with chronic Lyme disease from all over this country and other countries is that the predominant problem with these patients is underdiagnosis and undertreatment. By and large, these patients are chronically ill and many are disabled, and a typical history, heard repeatedly, is that years had gone by before proper diagnosis. Alternatively, they were treated with ineffective regimes that were not able to control their infection, but were then declared cured and further treatment was not given. These people went on to see many physicians, spending thousands of dollars, and were diagnosed with a plethora of conditions, including fibromyalgia, depression, osteoarthritis, rheumatoid arthritis, multiple sclerosis, organic brain syndrome, and the like. Some were even considered malingerers. Many were referred to psychiatrists when their medical physicians lost faith in the validity of their patient's complaints. The tragedy that is chronic Lyme disease today could and should have been prevented, but the fact that these same errors in medical care are still occuring is only reinforced by articles such as the one by Steere et al. The large, vocal, and at times militant Lyme disease support group movement in this country exists in part because of these very problems. I now plan to tabulate my experiences formally so they can be reported . I strongly recommend that other clinicians whose experiences are similar to mine do likewise. Until we primary physicians who provide the day-to-day care for these unfortunate people do this, the tragedy that is chronic Lyme disease will continue. Joseph J. Burrascano, Jr., MD East Hampton, NY (1) Steere AC, Taylor E, MuHugh GL, Logigian EL, The Overdiagnosis of Lyme disease. JAMA 1993;269:1812-1816. (2) Diagnosis and treatment of Lyme disease: NIH State of the Art Conference. Clinical Courier. August 1991;9:5-8. (3.) Bakken LL, Case KL, Callister SM, Bordeau NJ, Schell RC. Performance of 45 laboratories participating in a proficiency program for Lyme disease serelogy. JAMA. 1992;268:891-895. (4.) Dressler F, Matalino H, The T-ceproliferative assay in the diagnosis of Lyme disease. Ann Intern Med. 1991;115:533-539. Overdiagnosis of Lyme disease http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=492f427c43af27ad,3&seekm=19971114042601.XAA21044%40ladder02.news.aol.com#p ----- From the Lyme Alliance, "Spotlight on Lyme", December 1998: The Living Slide Show by Virginia T. Sherr, M.D. . . . In relation to all this, I was diagnosed as having the fibromyalgia-like syndrome which can accompany Lyme disease, babesiosia, and ehrlichiosis - the three tick-borne diseases for which I had tested positive. I also had abdominal pains, nighttime restless legs syndrome, hot/chilly feelings, and a daily worsening of physical weakness which I mistakenly blamed on some obscure medication side-effects. Before my diagnosis, I thought I had some weird form of malaria because of the diurnal pattern of these waves of symptoms. My mornings often were blessed with fewer miseries. At first, I was hit by the "waves" from about noon to midnight with constant pain. Months of IV antibiotics, antiparasitic medicine, and now oral antibiotics have increased my strength and reduced the duration of the "waves." . . . See complete article at: http://lymealliance.org/html/december.html ----- Subject: Re: Lyme/Fibromyalgia Date: 05 Oct 1997 00:00:00 GMT From: heirgm@umdnj.eu (heirgm) Organization: UMDNJ Newsgroups: sci.med.diseases.lyme dick4sails@aol.com (Dick4sails) wrote: >My daughter was at a camp near Port Jervis this summer, became ill with "flu". > She still aches all over - diagnosed as fibromyalgia. Her docor said Lyme > Disease tests are too inaccurate to have one. Any similiar cases or advice? > Guest While Lyme tests are not accurate in all cases, there are tests which may be of some beneifit. Blood PCR, CSF analyisis, LUAT and others may be enlightening. Testing within the first 6 weeks may not yield a possitive, but will provide a base-line against which to compare future testing. Your daughter was in an area endemic for LD. She is experiencing prolonged flu-like symptoms with generalized musculoskeletal discomfort. If I am correct she is a pre-teen. Sudden onset fibromyalgia in an active child is not likely. The flu, if that is the what she had, does not cause fibromyalgia. There are a multitude of data necessary which are lacking in her histroy. She needs a complete workup done by someone more familiar with LD then you MD apparently is. Where do you live. Perhaps I may be able to provide some referrals. Contact me by EMAIL heirgm@umdnj.edu GMH [Gary M. Heir, DMD Assoc. Clin. Professor, UMDNJ - NJ Dental School] Re: Lyme/Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3d0cf6430666a189,0&seekm=6193pv%247cu%241%40ha2.rdc1.nj.home.com#p ----- Archives of Internal Medicine Editor's Correspondence - April 14, 1997 The Costs of Lyme Disease The article "The Lyme Disease Controversy: Social and Financial Costs of Misdiagnosis and Mismanagement," by Sigal,[1] presents an interesting but incomplete discussion of the controversy and disagreements facing clinicians and patients in the diagnosis and treatment of Lyme disease. Many clinicians propose that there is a significant incidence of overdiagnosis and subsequent overtreatment of Lyme disease. This opinion was prominently set forth in a 1993 article, "The Overdiagnosis of Lyme Disease," by Steere et al.[2] In their article, Steere and colleagues note that a significant portion of the patients who were referred to a Lyme disease clinic for difficult-to-treat or poorly responsive disease did not actually have Lyme disease but, instead, had one of a handful of other conditions that seemed to occasionally follow or be confused with Lyme disease. Lack of antibody positivity to the Lyme organism was a common factor excluding the diagnosis of Lyme disease. Common diagnoses that had masqueraded as Lyme disease in Steere and coworkers' series included chronic fatigue syndrome, fibromyalgia, and depression. Interestingly, and without explanation, some of the patients responded to antibiotic treatment. Some observers may wonder if Steere and colleagues were guilty of underdiagnosing Lyme disease in these antibiotic-responsive patients. A major contribution to the understanding of this issue was made by Shadick et al[3] in an article entitled "The Long-term Clinical Outcomes of Lyme Disease" (Steere was the fourth author). In their article, 38 subjects with an established history of Lyme disease were compared with appropriately matched controls. Persisting symptoms and signs were sought. Compared with controls, subjects had a statistically significant increased incidence of arthralgia, paresthesia, coordination difficulties, fatigue, concentration difficulties, emotional lability, and sleep difficulties. Psychometric evaluation revealed increased abnormalities in subjects compared with controls. Seroreactivity was also evaluated. The results were reactive on indirect enzyme-linked immunosorbent assay in only 18 of 38 subjects. The results were reactive on Western blot analysis in another 4 subjects. Of 10 persistently symptomatic patients who were re-treated with antibiotics, 5 improved. A significant risk factor for persisting symptoms was a delay in initial treatment. Important lessons from the article by Shadick and colleagues are (1) persisting symptoms following "adequately treated" Lyme disease are common; (2) seroreactivity is frequently not found in this group; (3) antibiotic treatment is often beneficial for persistently symptomatic patients; and (4) delayed treatment increases the likelihood of persistent symptoms. Like Sigal, I have concerns regarding the costs of mistakenly diagnosing Lyme disease. However, given the above considerations, I find myself wondering what social and financial costs accrue from a lack of consideration of this diagnosis, with the resulting inadequate treatment and prolonged disability. Mark E. McCaulley, MD Steamboat Springs, Colo References 1. Sigal LH. The Lyme disease controversy: social and financial costs of misdiagnosis and mismanagement. Arch Intern Med. 1996;156:1493-1500. 2. Steere AC, Taylor E, McHugh GL, Logigian EL. The overdiagnosis of Lyme disease. JAMA. 1993;269:1812-1816. 3. Shadick NA, Phillips CB, Logigian EL, et al. The long-term clinical outcomes of Lyme disease. Ann Intern Med. 1994;121:560-567. (Arch Intern Med. 1997;157:817) Costs of Lyme Disease... [Letter, Apr 14 Arch Intern Med. 1997;157:817-818] http://www.ama-assn.org/sci-pubs/journals/archive/inte/vol_157/no_7/letter_1.htm ----- Title: Lyme Disease vs. Fibromyalgia Authors: Fein LA Conference: 10th Annual International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders, National Institutes of Health, Bethesda, MD April 28-30, 1997 Presenter: Lesley A. Fein, M.D., M.P.H. Private Practice, Rheumatology Abstract: The clinical definition of fibromyalgia and Lyme disease will be presented. Clinical and other diagnostic criteria (laboratory testing, radiology studies, etc.) will be examined to differentiate between the two. Examination of recent literature on fibromyalgia suggests a neurochemical etiology. These studies will be discussed. Unique ID: 97LDF021 http://www2.lymenet.org/domino/abstract.nsf/d11319484477c6d3852564a20010a645/42b2dbb283a40a008525660f0000123d?OpenDocument ----- Lyme Disease Electronic Mail Network LymeNet Newsletter Volume 1 - Number 14 - 6/28/93 *** SPECIAL ISSUE *** CHRONIC PERSISTENT INFECTION AND CHRONIC PERSISTENT DENIAL OF CHRONIC PERSISTENT INFECTION IN LYME DISEASE Kenneth B. Liegner, M.D. Internal & Critical Care Medicine Lyme Borreliosis & Related Disorders 8 Barnard Road Armonk, N.Y. 10504 . . . COROLLARIES TO CHRONIC PERSISTENT INFECTION: 2) Open-minded investigation of possible pathogenetic role of Bb in a variety of disorders, as the spectrum of the disease is continually expanding: M.S.-like and Lupus-like disorders Motor neurone disease Dementias/Organic brain syndromes (neuro-) psychiatric presentations ACLA-syndrome "idiopathic" cardiomyopathies "primary" pulmonary hypertension Lyme disease-associated fibromyalgia Lyme disease-associated chronic fatigue syndrome etc. etc. etc. . . . See complete article at: http://www2.lymenet.org/domino/nl.nsf/UID/1-14 ----- The Neuropsychiatric Assessment of Lyme Disease Robert Bransfield, M.D. There are an increasing number of patients with chronic Lyme disease (neuroboreliosis) presenting in psychiatric offices. Lyme disease does not begin as a psychiatric illness. Other symptoms occur in early stage disease. Late in the progression of this disease neurological, cognitive, and psychiatric symptoms predominate. If not well understood, these symptoms are sometimes viewed as non-specific and bizarre. Actually the symptoms can be quite specific with a clear physiological basis, but far too often a routine evaluation is insufficient to adequately evaluate these patients. When the evaluation is not property targeted, key symptoms can be overlooked and these patients may be mistakenly diagnosed with chronic fatigue syndrome, fibromyalgia, M.S., lupus, Epstein barr, as well as many other medical and psychiatric symptoms. (2) They are considered by some to be "hypochondriacal" or "crazy." As a result, many of these patients feel alienated from the mainstream of the health care system. (3,4,5). The recent work of Drs. Fallon and Nields drew attention to the significance of the psychiatric component of chronic Lyme disease. (2,6,7,8,9,10). See complete article at: The Neuropsychiatric Assessment of Lyme Disease http://mentalhealthandillness.com/tnaold.html ----- Aggression & Lyme Disease by Robert C. Bransfield, M.D. "In another case, a patient had no prior history of mental illness suicidal or homicidal tendencies. The patient went to their HMO primary care physician complaining of an apparent tick bite. It is reported that the doctor neither sent the patient for testing nor initially offered antibiotic treatment. As symptoms progressed, the patient was diagnosed with fibromyalgia. Subsequent symptoms included word substitutions, getting lost, losing items, and an inability to find their car in a parking lot. Eventual tests confirming LD included a Western Blot, brain SPECT, and an ophthalmologic exam." june http://www.lymealliance.org/html/june.html ----- The concurrence of lupus and fibromyalgia: implications for diagnosis and management Robert Bennett MD "Three infectious diseases have been linked to the development of fibromyalgia; all may develop clinical and serological features suggesting a diagnosis of lupus. They are hepatitis-C (24,25), HIV (26,27), and Lyme disease (28,29). All three have increased immune reactivity with a tendency to auto-antibody production (25,30,31). Hepatitis-C in particular may develop a low grade synovitis and an associated Sjogren's syndrome (32). Thus patients with these infections and concurrent fibromyalgia may be misdiagnosed as having lupus." The concurrence of lupus and fibromyalgia http://www.myalgia.com/off/lupusfm.htm ----- When To Suspect Lyme Disease by John D. Bleiweiss, M.D., April, 1994 "Prior to proper diagnosis, patients habitually report that they were assigned the following diagnoses most often: Chronic Fatigue Syndrome, Multiple Sclerosis, Fibromyalgia, Lupus, Candidiasis, Chronic mononucleosis, Hypoglycemia, and Stress-related illness. If these appear in a differential diagnosis, then LD [Lyme disease] should be considered." See complete essay at: When to Suspect Lyme http://cassia.org/essay.htm ----- Medical Scientific Update Volume 10, Number 4, April, 1992. Diseases of the '90s Lyme Disease J. Roger Hollister, M.D. "In providing the history to the physician, a minority of patients recall having received a tick bite. Because Lyme disease is a multisystem illness that occurs in stages and has widely varied manifestations, it mimics many other medical conditions and the differential diagnosis is extensive. In the early stages, symptoms can resemble those of numerous infectious illnesses (e.g. mononucleosis; anicteric hepatitis; enteroviral infection, especially with coxsackievirus B; streptococcal cellulitis). Pediatricians frequently suspect acute rheumatic fever. Neurologic manifestations resemble those of several forms of infectious meningitis, sarcoidosis, or multiple sclerosis Skin lesions and joint abnormalities can suggest collagen vascular diseases. These patients also have been misdiagnosed with fibromyalgia and the chronic fatigue syndrome. The diagnosis is usually confirmed by serologic testing; most labs have changed to ELISA for measurement of IgG anti-B. Burgdorferi antibodies. Results are considered positive if the patient's O>D. is greater than three standard deviations above the negative control O.D. Sensitivity in Stage II and III classic disease is about 95 percent. Specificity is about 90-95 percent; that is, there is a 4-6 percent false positive rate. If the disease is untreated, titers should continue to rise. Antibodies remain detectable for many years. False negatives are very rare." See complete article at: Diseases of the 90's http://www.njc.org/MSU/10n4MSU_Disease_90.html ----- NON-ARTICULAR RHEUMATISM AND FIBROMYALGIA A. A. Kalla - MB ChB, FCP (SA) MD, Senior Specialist, Rheumatic Diseases Unit, Department of Medicine, University of Cape Town Jimasa August 1996-Vol.2-No.2 "Many hypotheses have been put forward to explain the aetiology of PFS [primary fibromyalgia syndrome](5). There is no evidence to support a viral aetiology, but several studies have shown high prevalence of PFS among subjects investigated for Lyme disease." medical4 http://www.ima.org.za/MEDICAL4.HTML ----- From the Colorado HealthNet web site: Fibromyalgia Questions and Answers: Relationship to Other Diseases The Relationship of Fibromyalgia to Other Illnesses 1.Question: How can one tell if he/she has fibromyalgia or advanced stages of Lyme disease? Is there any test to prove or disprove the other? Answer: Lyme disease can sometimes mimic a fibromyalgia type syndrome. There are some lab tests which may help determine whether one has Lyme disease and this is called a Lyme titer. Should the initial screening test be positive, then a;Western; test needs to be run to corroborate or confirm this diagnosis. Sometimes, early Lyme disease may be associated, however, with negative test results. In addition, one needs to see one's physician to further evaluate whether Lyme disease may be a possibility where other features of Lyme disease may include arthritis, rash, fever, peripheral (abnormalities of small peripheral nerves) or abnormalities of the central nervous system. Stuart Kassan, MD., Colorado Arthritis Associates. http://www.coloradohealthnet.org/fibro/QnA/fibro_other.html ----- Peter Gorevic, M.D. Professor of Medicine Chief, Division of Rheumatology Mt. Sinai School of Medicine Tel: (212) 824-7792 Fax: (212) 849-2574 E-mail: gorevp01@doc.mssm.edu M.D.: New York University, 1970 Board Certifications: Rheumatology; Allergy/Immunology; Geriatrics "Lyme Disease: Borrelia infection is an important local problem, as New York City is a major endemic area for this disease, encompassing Westchester and Suffolk Counties. Patients who become chronically infected by the organism may experience severe joint and other musculoskeletal symptoms, which may in some instances progress to chronic arthropathy or fibromyalgia-like symptoms. Understanding of the immune responses to the organism and its relationship to the tick vector is central to correct diagnosis and appropriate treatment." See complete article at: Faculty HTML http://www.mssm.edu/medicine/rheumatology/Faculty.htm ----- Dr Gabe Mirkin, M.D. Chronic Muscle Aches May Be Treatable Regular exercisers should expect their muscles to feel sore on the day after they exercise intensely,but if the soreness doesn't go away, they need a medical evaluation. When you exercise vigorously,your muscles are injured. Muscle biopsies taken on the day after intense exercise show bleeding intothe muscle fibers and disruption of the Z-bands that hold muscle fiber filaments together as they slideby each other. The soreness you feel should disappear within 48 hours, and with the most severe workouts, it should certainly disappear within a week or two. If the soreness remains after a few weeks, you should check with your doctor. You may have aninfection anywhere in your body, an autoimmune disease such as arthritis or other conditions. Somedoctors call chronic muscle soreness fibromyalgia, chronic fatigue syndrome or multiple chemicalsensitivities. These diagnoses are really an admission by the physician that he hasn't the foggiest ideaof the cause. There are no laboratory tests and no specific signs and symptoms to establish a firm diagnosis. Hidden infections are often a cause. There are reports of people with muscle pain andnormal liver tests having hepatitis C which can be effectively treated with interferon injections (Revue du Rhumatisme, July-September 1994.) If you also have urinary symptoms, you may have a venereal disease caused by mycoplasma which can be cured with the antibiotics clarithromycin or azythromycin. You could have Lyme disease spread by a tick bite or a type of arthritis. If you have chronic muscle pain, don't accept a diagnosis of chronic fatigue syndrome, fibromyalgia or multiple chemical sensitivity until you have an evaluation for a hidden infection, autoimmune disease or tumor which my be treatable. For a free copy of the Mirkin Report on the latest breakthroughs in medicine, fitness and nutrition, send a stamped, self-addressed envelope to The Mirkin Report, 5618 Shields Drive, Bethesda, MD 20817. Comments or questions may be directed to: gabe.mirkin@mail.wdn.com Please understand, however, that a personal reply is usually not possible. Dr. Mirkin's Home Page on the World Wide Web is http://www.wdn.com/mirkin Chronic Muscle Aches May Be Treatable http://www.wdn.com/mirkin/fc06.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