Lyme disease misdiagnosed as fibromyalgia ************************************************************************ as of 26 October 1999 Table of Contents ----------------------------- 1. Introduction to Lyme disease and fibromyalgia, including nine reasons for false negative Lyme disease test results 2. Medical and scientific abstracts on Lyme disease and fibromyalgia - Abstracts supportive of a connection between Lyme disease and fibromyalgia - Abstracts not supportive of a connection between Lyme disease and fibromyalgia - Other abstracts pertaining to Lyme disease and fibromyalgia 3. Doctors on Lyme disease and fibromyalgia 4. Lyme disease organizations on Lyme disease and fibromyalgia 5. Federal government on Lyme disease and fibromyalgia 6. State governments on Lyme disease and fibromyalgia ----- [none found] 7. Other information on Lyme disease and fibromyalgia 8. Media articles about Lyme disease and fibromyalgia 9. Lyme disease patients previously misdiagnosed with fibromyalgia Resources for Lyme disease Resources for fibromyalgia 10. Update history for "Lyme disease misdiagnosed as fibromyalgia" --------------- 1. Introduction to Lyme disease and fibromyalgia: Fibromyalgia is also known as: Fibromyalgia syndrome (FMS) Fibromyositis Primary fibromyalgia syndrome (PFS) Secondary fibromyalgia Fibrositis Muscular Rheumatism Musculoskeletal Pain Syndrome (MPS) Nonarticular Rheumatism Periarticular Fibrositis Rheumatoid Myositis Tension Myalgia Fibrosis Lyme disease is also known as: Lyme arthritis Lyme encephalopathy Lyme meningitis Lyme borreliosis Tick-borne borreliosis Neuroborreliosis Borreliosis Lyme disease is a serious bacterial infection caused by a tick bite and affects humans and animals. Symptoms of Lyme disease http://www.geocities.com/HotSprings/Spa/6772/symptoms.txt [Editorial note: The purpose of this compilation of material related to Lyme disease and fibromyalgia is to present information that could be considered prior to diagnosis and treatment. Putting aside the issue of whether Lyme disease does or does not "cause" some cases of fibromyalgia, the two diseases share so many symptoms that Lyme disease, as documented below, is often mistaken for fibromyalgia. In any case, Lyme disease should be a differential diagnosis for all fibromyalgia patients.] ----- Nine reasons for false negative Lyme disease tests results: The Lyme Disease Foundation (LDF), in their brochure entitled "LDF Frequently Asked Questions About Lyme Disease" lists the following nine reasons for false negative Lyme disease tests results: [brackets contain my words] a. Antibodies against Bb are present, but the laboratory is unable to detect them. [Borrelia burgdorferi (Bb) is the Lyme disease bacteria.] b. Antibodies against Bb may not be present in detectable levels in patients with Lyme disease. Reasons are listed below. 1. The patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies. 2. The patient is currently on or has previously taken anti-inflammatory steroidal drugs (such as those taken to treat rheumatoid arthritis) or certain anticancer drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response. 3. The patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing. [I think this reason is very important and prevalent. For this reason, some of the worst cases of Lyme disease test negative - too much bacteria for the immune system to handle.] 4. The patient could be immunosuppressed for a number of other reasons and the immune system is not reacting to the bacterium. 5. The bacterium has changed its makeup (antigenic shift) limiting recognition by the patient's immune system. 6. The patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (2-6 weeks). Please do not interpret this statement as implying that you should wait for a positive test to begin treatment. 7. The laboratory has raised its cutoff so high that a patient's previously positive test is now borderline or negative. 8. The patient is reacting to the Lyme bacterium, but is not producing the "right" bands to be considered positive. Lyme Disease Foundation 1 Financial Plaza Hartford, CT 06103 (860)525-2000 fax (860)525-TICK Lyme Disease National Hotline (800)886-LYME email: mailto:lymefnd@aol.com web page: http://www.lyme.org/index2.html For more on false negative/positive Lyme disease test results see: Lyme disease and false negative or false positive blood test results http://www.geocities.com/HotSprings/Spa/6772/false-neg-pos-index.html --------------- 2. Medical and scientific abstracts on Lyme disease and fibromyalgia: Sources: National Library of Medicine: Internet Grateful Med Search Screen http://igm.nlm.nih.gov/cgi-bin/doler?account=++&password=++ Welcome to PubMed http://www.ncbi.nlm.nih.gov/PubMed/ The Lyme Disease Network of NJ, Inc. Lyme Disease Network Medical / Scientific Literature Database Search Form http://www2.lymenet.org/domino/abstract.nsf/$$Search Abstracts: Contents -------- - Abstracts supportive of a connection between fibromyalgia and Lyme disease. - Abstracts not supportive of a connection between fibromyalgia and Lyme disease. - Other abstracts pertaining to Lyme disease and fibromyalgia. --------------- Abstracts supportive of a connection between fibromyalgia and Lyme disease: TITLE: Pathogenesis of Lyme neuroborreliosis in the rhesus monkey: the early disseminated and chronic phases of disease in the peripheral nervous system. AUTHORS: Roberts ED; Bohm RP Jr; Lowrie RC Jr; Habicht G; Katona L; Piesman J; Philipp MT AUTHOR AFFILIATION: Tulane Regional Primate Research Center, Tulane University Medical Center, Covington, Louisiana 70433, USA. SOURCE: J Infect Dis 1998 Sep;178(3):722-32 CITATION IDS: PMID: 9728541 UI: 98396713 ABSTRACT: The histopathologic and immunohistochemical features of early and late neuroborreliosis of the peripheral nervous system were investigated in rhesus macaques infected with the JD1 strain of Borrelia burgdorferi. Infection was proven by culture or polymerase chain reaction analysis of skin biopsies and indirectly by Western blot analysis. Three months after infection, neuritis involving multiple nerves was the most consistent neurologic manifestation. Both macrophages and B lymphocytes but not T lymphocytes were present in the cellular infiltrates. Axonal structures surrounding infiltrates had changes consisting of demyelination and axonal phagocytosis. Some of the Schwann cells in lesions stained with anti-nitrotyrosine and anti-tumor necrosis factor- alpha antibodies. B. burgdorferi, or antigens thereof, were visualized immunohistochemically within macrophages. Forty-six months after infection, the most common changes were regenerative, whereas neuritis was infrequent. Aberrant axonal regeneration, irregularly sized myelinated fibers, and fibrosis were frequently observed. Possible mechanisms to explain the appearance and subsidence of Lyme neuritis are discussed. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9728541&form=6&db=m&Dopt=b ----- TITLE: Detection of Borrelia burgdorferi DNA in muscle of patients with chronic myalgia related to Lyme disease [see comments] AUTHORS: Frey M; Jaulhac B; Piemont Y; Marcellin L; Boohs PM; Vautravers P; Jesel M; Kuntz JL; Monteil H; Sibilia J AUTHOR AFFILIATION: Service de Medecine Physique et Readaptation, Hopitaux Universitaires de Strasbourg, and the Institut de Bacteriologie, Faculte de Medecine, Universite Louis Pasteur, France. SOURCE: Am J Med 1998 Jun;104(6):591-4 CITATION IDS: PMID: 9674723 UI: 98337480 COMMENT: Comment in: Am J Med 1999 Apr;106(4):491-2 [No abstract available] MESH Headings Adult ; Aged ; Antibodies, Bacterial BL ; Borrelia burgdorferi GE/IM/*IP ; Case-Control Studies ; Chronic Disease ; DNA, Bacterial *IP ; Female ; Fibromyalgia *MI ; Human ; Lyme Disease *CO/DT ; Male ; Middle Age ; Muscle, Skeletal *MI ; Polymerase Chain Reaction ; Time Factors http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9674723&form=6&db=m&Dopt=b ----- TITLE: Differentiation of orofacial pain related to Lyme disease from other dental and facial pain disorders. AUTHORS: Heir GM AUTHOR AFFILIATION: Department of Oral Pathology, Biology and Diagnostic Sciences, University of Medicine and Dentistry, New Jersey Dental School, Newark, USA. SOURCE: Dent Clin North Am 1997 Apr;41(2):243-58 CITATION IDS: PMID: 9142482 UI: 97287390 ABSTRACT: The diagnostic process for the orofacial pain patient is often perplexing. Compounding the process of solving a diagnostic mystery is the multiplicity of etiologic factors. The propensity for Lyme disease to present with symptoms mimicking dental and temporomandibular disorders makes the task even more complex. It is hoped that the reader is cognizant of the fact that a pathologic process of dental structures- -the teeth and their attachments to the mandible and maxilla, the temporomandibular joints, masticatory musculature, and vascular supply and sensory innervation of the oromandibular anatomy--may also be the source of facial pain. Although unique, similar complaints may also be manifestations of other causes, including pain associated with Lyme disease. The informed and fastidious clinician does not overlook these possibilities when evaluating the headache and facial pain patient. The clinician should be equipped with the knowledge and minimal armamentarium to evaluate the patient appropriately. To paraphrase from Sherlock Holmes, we must first eliminate the impossible, whatever is left is the truth, no matter how unlikely. A differential diagnosis must be achieved based on clinical experience, unbiased observations, and probability. MESH Headings Diagnosis, Differential ; Facial Pain *ET ; Fibromyalgia DI ; Headache ET ; Human ; Lyme Disease CO/*DI ; Myofascial Pain Syndromes DI ; Neuralgia DI ; Stomatitis, Denture DI ; Temporomandibular Joint Disorders CO/*DI/ET ; Toothache ET http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9142482&form=6&db=m&Dopt=b ----- TITLE: [Detection of Borrelia burgdorferi DNA by gene amplification in the muscle of a patient with fibromyalgia (letter)] VERNACULAR TITLE: Detection d'ADN de Borrelia burgdorferi par amplification genique dans le muscle d'un patient atteint de fibromyalgie. AUTHORS: Frey M; Jaulhac B; Sibilia J; Monteil H; Kuntz JL; Vautravers P SOURCE: Presse Med 1995 Nov 11;24(34):1623 CITATION IDS: PMID: 8545375 UI: 96142452 No abstract available. MESH Headings Borrelia burgdorferi *IP ; Case Report ; Fibromyalgia *MI ; Human ; Lyme Disease *MI ; Male ; Middle Age ; Polymerase Chain Reaction http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8545375&form=6&db=m&Dopt=b ----- TITLE: Juxta-articular fibrotic nodules in Borrelia infection--ultrastructural details of therapy-induced regression. AUTHORS: Marsch WC; Wolter M; Mayet A AUTHOR AFFILIATION: Department of Dermatology, Martin-Luther-Universitat, Halle (Saale)- Wittenberg, Germany. SOURCE: Clin Exp Dermatol 1994 Sep;19(5):394-8 CITATION IDS: PMID: 7955495 UI: 95043514 ABSTRACT: Juxta-articular fibrotic nodules in chronic Borrelia burgdorferi infection commonly regress rapidly under antibiotic therapy. They may therefore serve as a good in vivo model for studying the development and regression of cutaneous fibrotic processes. As shown in a typical case of acrodermatitis chronica atrophicans, this spirochete-induced fibrosis in the upper subcutis of the elbow region is histologically characterized by broad hyalinized collagen tracts interspersed with prominent perivascular lymphocytes and plasma cells. These immune cells vanish completely after 5 days of antibiotic treatment, while fibroblasts discharge matrix vesicles and form elastic fibres. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=7955495&form=6&db=m&Dopt=b ----- TITLE: Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome. AUTHORS: Goldenberg DL AUTHOR AFFILIATION: Newton-Wellesley Hospital, Massachusetts. SOURCE: Curr Opin Rheumatol 1994 Mar;6(2):223-33 CITATION IDS: PMID: 8024971 UI: 94296866 ABSTRACT: No major pathophysiologic or therapeutic findings have appeared over the past year regarding fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome, three poorly understood, controversial, and overlapping syndromes. The frequent prevalence of these disorders in association with Lyme disease and other medical and psychiatric illness was emphasized. New studies demonstrated the potential role for central nervous system activation in fibromyalgia and chronic fatigue syndrome. MESH Headings Fatigue Syndrome, Chronic */EP/PP/TH ; Fibromyalgia */EP/PP/TH ; Human ; Myofascial Pain Syndromes */EP/PP/TH ; Prevalence http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8024971&form=6&db=m&Dopt=b ----- TITLE: Do infections trigger fibromyalgia? [editorial; comment] AUTHORS: Goldenberg DL SOURCE: Arthritis Rheum 1993 Nov;36(11):1489-92 CITATION IDS: PMID: 8240426 UI: 94059187 COMMENT: Comment on: Arthritis Rheum 1993 Nov;36(11):1493-1500 No abstract available. MAIN MESH HEADINGS: Fibromyalgia/*etiology Lyme Disease/*complications [Overview of the syndrome of fibromyalgia. Consideration is given to infectious agents as possible triggers of the development of the signs and symptoms associated with this disorder. Lyme disease as a possible infectious trigger is discussed in depth.] http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8240426&form=6&db=m&Dopt=b ----- TITLE: Lyme disease. AUTHORS: Brier SR AUTHOR AFFILIATION: Division of Clinical Sciences, New York Chiropractic College, Glen Head. SOURCE: J Manipulative Physiol Ther 1990 Jul-Aug;13(6):337-9 CITATION IDS: PMID: 2394950 UI: 90369241 ABSTRACT: A 29-year-old male tennis player was examined for neck pain, limited mobility, and right elbow pain. The patient was treated for cervical facet syndrome by chiropractic manipulative therapy (CMT) for a period of 6 weeks. After this time the patient had a relapse of cervical pain, spinal myofascitis, dermatitis and migratory arthropathy. Several specialists were consulted throughout the case including a rheumatologist, and a tentative diagnosis of psoriatic arthritis and fibromyalgia was made. A follow-up blood evaluation led to a new diagnosis of Lyme disease. MESH Headings Adult ; Arthritis, Infectious DI ; Case Report ; Cervical Vertebrae ; Chiropractic ; Diagnosis, Differential ; Human ; Lyme Disease *DI ; Male ; Spinal Diseases *DI/TH http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=2394950&form=6&db=m&Dopt=b ----- TITLE: [Lyme borreliosis in neurology and psychiatry] VERNACULAR TITLE: Die Lyme-Borreliose in Neurologie und Psychiatrie. AUTHORS: Kohler J AUTHOR AFFILIATION: Neurologische Klinik mit Poliklinik, Universitat Freiburg. SOURCE: Fortschr Med 1990 Apr 10;108(10):191-3, 197 CITATION IDS: PMID: 2187778 UI: 90256076 ABSTRACT: Neurological manifestations of Lyme disease are as multifarious as the entire spectrum of this common infection. In stage I, fibromyalgia and, more rarely, painful muscular fasciculation, dominate the clinical picture. In the individual case, mild psychic abnormalities may already be observed. Characteristic of the 2nd stage is lymphocytic meningopolyneuritis. Involvements of the CNS are expressed not so much in focal deficits, as in diffuse psychopathological disorders. In stage 3, CNS manifestations are characterized by chronic, in part multifocal, encephalitides and encephalomyelitides, isolated transverse myelitides and cerebral vasculitic disorders. The clinical symptomatology may be dominated by severe psychiatric syndromes. Connatal and subclinical latent infections of the nervous system with Borrelia represent special forms. MESH Headings Diagnosis, Differential ; English Abstract ; Human ; Lyme Disease CO/*DI ; Mental Disorders *DI/ET ; Nervous System Diseases *DI/ET http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=2187778&form=6&db=m&Dopt=b ----- TITLE: Fatal Lyme carditis and endodermal heterotopia of the atrioventricular node [published erratum appears in Postgrad Med J 1990 Mar;66(773):258] AUTHORS: Cary NR; Fox B; Wright DJ; Cutler SJ; Shapiro LM; Grace AA AUTHOR AFFILIATION: Department of Histopathology, Charing Cross and Westminster School, London, UK. SOURCE: Postgrad Med J 1990 Feb;66(772):134-6 CITATION IDS: PMID: 2349186 UI: 90272586 ABSTRACT: A fatal case of Lyme carditis occurring in a Suffolk farmworker is reported. Post-mortem examination of the heart showed pericarditis, focal myocarditis and prominent endocardial and interstitial fibrosis. The additional finding of endodermal heterotopia ('mesothelioma') of the atrioventricular node raises the possibility that this could also be related to Lyme infection and account for the relatively frequent occurrence of atrioventricular block in this condition. Lyme disease should always be considered in a case of atrioventricular block, particularly in a young patient from a rural area. The heart block tends to improve and therefore only temporary pacing may be required. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=2349186&form=6&db=m&Dopt=b ----- TITLE: Demonstration of spirochaetes in patients with Lyme disease with a modified silver stain. AUTHORS: De Koning J; Bosma RB; Hoogkamp-Korstanje JA SOURCE: J Med Microbiol 1987 May;23(3):261-7 CITATION IDS: PMID: 2438410 UI: 87226085 ABSTRACT: Spirochaetes were demonstrated in material from patients with Lyme disease by short-time high-concentrate silver impregnation after treatment with amylase. Removal of mucoid material was essential to visualise Borrelia burgdorferi. Lyme spirochaetes were demonstrated in material from 23 patients with Lyme disease--erythema chronicum migrans (ECM) 10, lymphadenosis benigna cutis (LABC) 7, arthritis 4 and Bannwarth's syndrome 2. Spirochaetes were localised in the subepidermal zone, peri- and intravascularly, and in collagen fibres in ECM and LABC, and beneath the synovial lining cells in arthritis, producing marked vascular changes with fibrosis and synovial hyperplasia. Spirochaetes were also demonstrated in CSF from a patient with Bannwarth's syndrome. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=2438410&form=6&db=m&Dopt=b --------------- Abstracts not supportive of a connection between fibromyalgia and Lyme disease: TITLE: Lyme disease update. Current approach to early, disseminated, and late disease. AUTHORS: Rahn DW; Felz MW AUTHOR AFFILIATION: Section of General Internal Medicine, Medical College of Georgia School of Medicine, Augusta 30912-3104, USA. deptmed.drahn@mail.mcg.edu SOURCE: Postgrad Med 1998 May;103(5):51-4, 57-9, 63-4 passim CITATION IDS: PMID: 9590986 UI: 98253211 ABSTRACT: A rational approach to diagnosis and treatment of Lyme disease requires an understanding of the endemic range of the tick vectors for B burgdorferi, the epidemiologic risk factors, and the spectrum of clinical manifestations. A two-step approach to serologic testing (ELISA followed by Western blot analysis of positive or equivocal results) can be useful if the pretest likelihood of Lyme disease is higher than 20%. Consideration should be given to the possibility of (1) a noninfectious disease with clinical features similar to those of Lyme disease or (2) coinfection with a second tick-transmitted organism. Late Lyme disease must be distinguished by clinical characteristics from fibromyalgia (the commonest source of misdiagnosis in several studies). Antibiotic therapy should be tailored to the extent of disease and limited to 4 weeks in most cases. Human vaccines based on an outer-surface protein from B burgdorferi have been tested in large-scale US clinical trials and may soon be approved for use in persons whose occupational or recreational activities place them at risk for B burgdorferi exposure. MESH Headings Animal ; Antibiotics *TU ; Arachnid Vectors ; Blotting, Western ; Enzyme-Linked Immunosorbent Assay ; Human ; Lyme Disease *DI/*DT/ET/TM ; Prevalence ; Risk Factors ; Ticks ; Time Factors Publication Type http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9590986&form=6&db=m&Dopt=b ----- TITLE: A "minority" opinion about the diagnosis and treatment of Lyme arthritis. AUTHORS: Graninger W AUTHOR AFFILIATION: Klinische Abt. fur Rheumatologie, Universitatsklinik fur Innere Medizin III, Wien, Austria. SOURCE: Infection 1996 Jan-Feb;24(1):95-7 CITATION IDS: PMID: 8852481 UI: 97005170 ABSTRACT: Historically, arthritis was the main symptom which led to the description of the disease called Lyme borreliosis. However, a relatively high awareness of doctors and patients of tick-borne diseases seems to cause a trend to frequently diagnose this antibiotic-sensitive disease. A case can be defined as borreliosis only if either the typical erythema migrans is reliably identified by a physician or if a characteristic late manifestation of Lyme disease is accompanied by unequivocal serological and/or bacteriological evidence of Borrelia infection. Within the musculoskeletal system, the only reliably characteristic symptom is true synovitis, as defined by the palpable swelling of a joint. Mere joint pain or the subjective pain syndrome of fibromyalgia do not constitute a defining symptom for borreliosis. An evaluation of the frequency of Borrelia-associated arthritis in our Viennese rheumatology outpatient clinic revealed only six well-defined cases among 1,673 subsequent referrals. Based on "serological" suspicion, the question had been asked about possible borreliosis in 87 of these patients. In order to avoid unnecessary anxiety about possible long-term complications of Lyme disease among (actually misdiagnosed) patients, the diagnosis of Lyme arthritis should only be made according to the stringent criteria mentioned above. The antibiotic treatment, which is given to many questionable cases of borreliosis ex iuvantibus, although possibly of benefit to a few cases of otherwise undiagnosed reactive arthritis due to infections with microbes other than Borrelia burgdorferi, has to be termed irrational. MESH Headings Arthritis, Infectious CO/*DI/PP/*TH ; Human ; Lyme Disease CO/*DI/PP/*TH http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8852481&form=6&db=m&Dopt=b ----- TITLE: "Chronic Lyme disease" as the incorrect diagnosis in patients with fibromyalgia [see comments] AUTHORS: Hsu VM; Patella SJ; Sigal LH AUTHOR AFFILIATION: Department of Medicine, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick 08903-0019. SOURCE: Arthritis Rheum 1993 Nov;36(11):1493-500 CITATION IDS: PMID: 8240427 UI: 94059188 COMMENT: Comment in: Arthritis Rheum 1993 Nov;36(11):1489-92 ABSTRACT: OBJECTIVE. To evaluate a large number of patients referred with persistent symptoms thought to represent chronic Lyme disease. METHODS. We retrospectively reviewed the charts of nearly 800 patients referred with persisting nonspecific musculoskeletal and/or neurologic symptoms thought to represent chronic Lyme disease. RESULTS. Seventy-seven patients were found to have fibromyalgia, not ongoing Lyme disease, as the explanation of their chronic symptoms. Many had received multiple courses of antibiotic therapy for symptoms of fibromyalgia mistakenly attributed to chronic Lyme disease. No patient reported permanent and/or total resolution of fibromyalgia symptoms following antibiotic therapy. Appropriate therapy for fibromyalgia in those who remained compliant, however, was often effective in improving some if not all of the chronic symptoms. CONCLUSION. Fibromyalgia is a treatable and potentially curable disorder, and should be considered in the evaluation of patients with "refractory Lyme disease." Keywords: Adult, Aged, Antibiotics, THERAPEUTIC USE, Chronic Disease, Diagnostic Errors, Female, Fibromyalgia, DIAGNOSIS, Human, Lyme Disease, DIAGNOSIS, DRUG THERAPY, Male, Middle Age http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8240427&form=6&db=m&Dopt=b ----- TITLE: Experience at a referral center for patients with suspected Lyme disease in an area of nonendemicity: first 65 patients. AUTHORS: Burdge DR; O'Hanlon DP AUTHOR AFFILIATION: Department of Medicine, University of British Columbia, Vancouver, Canada. SOURCE: Clin Infect Dis 1993 Apr;16(4):558-60 CITATION IDS: PMID: 8513065 UI: 93291347 ABSTRACT: A multidisciplinary referral center was established at a university hospital for prospectively assessing patients with possible Lyme disease. Borrelia burgdorferi is not known to be endemic in this region, but considerable anxiety about Lyme disease has developed among the general public. Sixty-five patients were referred for suspected Lyme borreliosis. Detailed histories were obtained and physical examinations were performed; patients were investigated aggressively in accordance with their symptom complexes. Strict diagnostic criteria consistent with published standards were applied. Only two of the 65 patients were judged to have probable Lyme disease. Definite major alternate diagnoses were made for 50 patients (77%); firm medical diagnoses (11 dermatologic, 9 rheumatologic, 9 infectious disease, 6 gastrointestinal, 4 neurological, and 2 miscellaneous) were made for 41 patients (63%); and major psychiatric diagnoses were made for 9 patients (14%). Probable diagnoses of chronic fatigue syndrome and fibromyalgia were made for 11 patients (17%). The conditions of four patients (6%) were undiagnosed. A referral center for patients with suspected Lyme disease can be useful even in an area of nonendemicity, and careful clinical assessment will reveal treatable alternate diagnoses for many patients with suspected Lyme disease. Keywords: Adolescence, Adult, Aged, Antibodies, Bacterial, BLOOD, Blotting, Western, Borrelia burgdorferi, IMMUNOLOGY, Canada, Child, Child, Preschool, Diagnosis, Differential, Female, Fluoroimmunoassay, Human, Immunoenzyme Techniques, Lyme Disease, DIAGNOSIS, Male, Middle Age, Prospective Studies, Referral and Consultation, Support, Non-U.S. Gov't http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8513065&form=6&db=m&Dopt=b ----- TITLE: Lyme arthritis as the incorrect diagnosis in pediatric and adolescent fibromyalgia. AUTHORS: Sigal LH; Patella SJ AUTHOR AFFILIATION: Department of Medicine, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick. SOURCE: Pediatrics 1992 Oct;90(4):523-8 CITATION IDS: PMID: 1408503 UI: 93026860 ABSTRACT: In areas endemic for Lyme disease there is increasing concern and anxiety about possible chronic and untreatable manifestations of the disease. The authors have diagnosed fibromyalgia in many patients with chronic musculoskeletal complaints in whom chronic Lyme arthritis had previously been diagnosed as the cause of their joint pains. Fibromyalgia is a common disorder, causing arthralgia (not true arthritis), fatigue, and debility. The repeated and/or long-term antibiotic therapy prescribed for "chronic Lyme disease" is not successful in curing the symptoms of fibromyalgia. Especially in areas where anxiety about Lyme disease is great, it is important to be careful in diagnosing chronic Lyme disease. Fibromyalgia is a potentially treatable and curable cause of chronic complaints and should be considered in the differential diagnosis of "refractory Lyme arthritis." MESH Headings Adolescence ; Child ; Diagnostic Errors ; Female ; Fibromyalgia *DI ; Human ; Lyme Disease *DI ; Male ; Retrospective Studies http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1408503&form=6&db=m&Dopt=b ----- TITLE: Summary of the first 100 patients seen at a Lyme disease referral center. AUTHORS: Sigal LH AUTHOR AFFILIATION: Department of Medicine, Robert Wood Johnson Medical School, New Brunswick, New Jersey 08903-0019. SOURCE: Am J Med 1990 Jun;88(6):577-81 CITATION IDS: PMID: 2346158 UI: 90266835 ABSTRACT: PURPOSE AND PATIENTS AND METHODS: Lyme disease is a major clinical problem in a number of endemic areas in the United States. In areas where anxiety about the disease is high, patients and physicians often ascribe clinical concerns to Lyme disease. Incorrect diagnosis often leads to unnecessary antibiotic treatment (often prolonged or repeated intravenous therapy). This report summarizes the cases of the first 100 patients referred to the Lyme Disease Center at Robert Wood Johnson Medical School. RESULTS: In only 37 of the patients referred was Lyme disease, either current or preceding, the explanation for the complaints. Many of the patients had another definable arthropathy. Twenty-five of the patients had fibromyalgia, which has not previously been reported in Lyme disease. Three of these patients had active Lyme disease at the time of evaluation, and 17 had a history suggesting preceding Lyme disease. Approximately half of the 91 courses of antibiotic therapy given to these 100 patients before referral were probably unwarranted. CONCLUSIONS: Anxiety about possible late manifestations of Lyme disease has made Lyme disease a "diagnosis of exclusion in many endemic areas. Persistence of mild to moderate symptoms after adequate therapy and misdiagnosis of fibromyalgia and fatigue may incorrectly suggest persistence of infection, leading to further antibiotic therapy. Attention to patient anxiety and increased awareness of these musculoskeletal problems after therapy should decrease unnecessary therapy of previously treated Lyme disease. MESH Headings Adolescence ; Adult ; Aged ; Antibiotics TU ; Antibodies, Bacterial AN ; Arthritis, Infectious DI ; Borrelia burgdorferi IM ; Child ; Child, Preschool ; Diagnosis, Differential ; Erythema Chronicum Migrans DI ; Female ; Fibromyalgia DI ; Human ; Lyme Disease BL/*DI/DT ; Male ; Middle Age ; Referral and Consultation ; Retrospective Studies http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=2346158&form=6&db=m&Dopt=b --------------- Other abstracts pertaining to Lyme disease and fibromyalgia: TITLE: Lyme disease. Shift the paradigm! AUTHORS: Ellenbogen C SOURCE: Arch Fam Med 1997 Mar-Apr;6(2):191-5 CITATION IDS: PMID: 9075458 UI: 97229895 MESH Headings Blotting, Western ; Borrelia burgdorferi * ; Cefotaxime TU ; Ceftriaxone TU ; Cephalosporins TU ; Chronic Disease ; Diagnosis, Differential ; Fatigue Syndrome, Chronic DI/MI ; Fibromyalgia DI/MI ; Human ; Lyme Disease */DI/DT/IM ; Severity of Illness Index http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9075458&form=6&db=m&Dopt=b ----- TITLE: Complaints attributed to chronic Lyme disease: depression or fibromyalgia? [letter; comment] AUTHORS: Berman DS; Wenglin BD SOURCE: Am J Med 1995 Oct;99(4):440 CITATION IDS: PMID: 7573105 UI: 96006095 COMMENT: Comment on: Am J Med 1994 Apr;96(4):365-74 No abstract available. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=7573105&form=6&db=m&Dopt=b ----- TITLE: Musculoskeletal manifestations of Lyme disease. AUTHORS: Steere AC AUTHOR AFFILIATION: Division of Rheumatology/Immunology, New England Medical Center, Tufts University School of Medicine, Boston, Massachusetts 02111, USA. SOURCE: Am J Med 1995 Apr 24;98(4A):44S-48S; discussion 48S-51S CITATION IDS: PMID: 7726191 UI: 95243253 ABSTRACT: Musculoskeletal involvement, particularly arthritis, is a common feature of Lyme disease. Early in the illness, patients may experience migratory musculoskeletal pain in joints, bursae, tendons, muscle, or bone in one or a few locations at a time, frequently lasting only hours or days in a given location. Weeks to months later, after the development of a marked cellular and humoral immune response to the spirochete, untreated patients often have intermittent or chronic monoarticular or oligoarticular arthritis-primarily in large joints, especially the knee-during a period of several years. The diagnosis of Lyme arthritis is usually based on the presence of this characteristic clinical picture, exposure in an endemic area, and an elevated immunoglobulin G antibody response to Borrelia burgdorferi. In addition, spirochetal DNA can often be detected in joint fluid by polymerase chain reaction. Lyme arthritis can usually be treated successfully with 1- month courses of oral doxycycline or amoxicillin or with 2- to 4-week courses of intravenous ceftriaxone. However, patients with certain genetic and immune markers may have persistent arthritis, despite treatment with oral or intravenous antibiotics. B. burgdorferi may occasionally trigger fibromyalgia, a chronic pain syndrome with diffuse joint and muscle symptoms. This syndrome does not appear to respond to antibiotic therapy. MESH Headings Arthritis, Infectious *MI/TH ; Diagnosis, Differential ; Human ; Lyme Disease *CO/*DI/TH ; Support, U.S. Gov't, P.H.S. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=7726191&form=6&db=m&Dopt=b ----- TITLE: Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome. AUTHORS: Goldenberg DL AUTHOR AFFILIATION: Newton-Wellesley and Tufts University School of Medicine, Massachusetts, USA. SOURCE: Curr Opin Rheumatol 1995 Mar;7(2):127-35 CITATION IDS: PMID: 7766493 UI: 95283902 ABSTRACT: Two important studies in which nuclear magnetic resonance spectroscopy was used convincingly demonstrated that muscle is not the primary pathologic factor in fibromyalgia. There were further studies reporting that fibromyalgia-chronic fatigue syndrome may follow well treated Lyme disease or mimic Lyme disease. The longest therapeutic trial to date in fibromyalgia demonstrated an initial modest effect of tricyclic medications, but at 6 months that efficacy was no longer evident. Investigation in both fibromyalgia and chronic fatigue syndrome now focuses on the central nervous system. The use of new technology, eg, neurohormonal assays and imaging such as single-photon emission computed tomography scan, may be important in understanding these elusive conditions. MESH Headings Fatigue Syndrome, Chronic */DI/ET/TH ; Fibromyalgia */DI/ET/TH ; Human ; Myofascial Pain Syndromes */DI/TH http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=7766493&form=6&db=m&Dopt=b ----- TITLE: [The classification of Lyme borreliosis (Lyme disease)] VERNACULAR TITLE: O klassifikatsii Laim-borrelioza (laimskoi bolezni). AUTHORS: Lesniak OM; Belikov ES SOURCE: Ter Arkh 1995;67(11):49-51 CITATION IDS: PMID: 8571252 UI: 96151296 ABSTRACT: A new version of Lyme's disease classification based on the authors' experience and other classifications is proposed. It distinguishes periods of the disease (acute, subacute, chronic) and stages (I--isolated erythema migrans, II--local disseminated infection, III--generalized disseminated infection) as well as the signs which are significant in Lyme's disease diagnosis: erythematous and nonerythematous form, seropositivity or seronegativity against Borrelia burgdorferi. Subclinical (latent) infection, complications of Lyme's disease (fibromyalgia syndrome, chronic fatigue syndrome, etc.) and mixed-infection with tick-borne viral encephalitis are included as well. MESH Headings Acute Disease ; Case Report ; Chronic Disease ; English Abstract ; Erythema Chronicum Migrans CL/DI ; Female ; Human ; Lyme Disease *CL/DI ; Male ; Middle Age http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8571252&form=6&db=m&Dopt=b ----- TITLE: Lyme disease: a growing threat to urban populations. AUTHORS: Steere AC AUTHOR AFFILIATION: Division of Rheumatology/Immunology, Tufts University School of Medicine, New England Medical Center, Boston, MA 02111. SOURCE: Proc Natl Acad Sci U S A 1994 Mar 29;91(7):2378-83 CITATION IDS: PMID: 8146126 UI: 94195749 ABSTRACT: Lyme disease or Lyme borreliosis, which is caused by three groups of the spirochete Borrelia burgdorferi, is transmitted in North America, Europe, and Asia by ticks of the Ixodes ricinus complex. The primary areas around the world that are now affected by Lyme disease are near the terminal moraine of the glaciers 15,000 years ago. The emergence of Lyme disease in the United States in this century is thought to have occurred because of ecological conditions favorable for deer. From 1982 through 1991, 40,195 cases occurring in 47 states were reported to the Centers for Disease Control, but enzootic cycles of B. burgdorferi have been identified in only 19 states. During the last several decades, the disease has spread to new areas and has caused focal outbreaks, including locations near Boston, New York, and Philadelphia. Lyme disease is like syphilis in its multisystem involvement, occurrence in stages, and mimicry of other diseases. Diagnosis of late neurologic abnormalities of the disorder has created the most difficulty. A recent phenomenon is that a number of poorly understood conditions, such as chronic fatigue syndrome or fibromyalgia, are misdiagnosed as "chronic Lyme disease." Part of the reason for misdiagnosis is due to problems associated with diagnostic tests. The various manifestations of Lyme disease can usually be treated successfully with oral doxycycline or amoxicillin, except for objective neurologic manifestations, which seem to require intravenous therapy. Vector control of thick-borne diseases has been difficult and, therefore, reduction of the risk of infection has been limited primarily to personal protection measures. MESH Headings Animal ; Borrelia burgdorferi CL/PY ; Deer PS ; Human ; Lyme Disease DI/*EP/MI/TH ; Support, U.S. Gov't, P.H.S. ; Ticks MI ; United States ; Urban Population http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8146126&form=6&db=m&Dopt=b ----- TITLE: Lyme disease [published erratum appears in Curr Opin Rheumatol 1994 Jan;6(1):117] AUTHORS: Evans J; Schoen RT AUTHOR AFFILIATION: Section of Rheumatology, Yale University School of Medicine, New Haven, CT 06510-8056. SOURCE: Curr Opin Rheumatol 1993 Jul;5(4):454-60 CITATION IDS: PMID: 8043045 UI: 93363507 ABSTRACT: In 1992, reported Lyme disease cases increased, but the majority remained clustered in the northeast and midwest, and in California. The clinical syndromes associated with infection are better understood, and this information can calm public anxiety. The concept of fibromyalgia occurring after infection with Borrelia burgdorferi allows more appropriate treatment in late Lyme disease. The polymerase chain reaction is being applied to gain insights into the pathogenic mechanisms of Lyme disease. Progress has been made toward developing a vaccine through the use of animal models. Together, these advances provide clinicians with more confidence in the diagnosis and treatment of Lyme disease. MESH Headings Diagnosis, Differential ; Fibromyalgia DI ; Human ; Lyme Disease *CO/DI/DT/PC ; Nervous System Diseases *CO http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8043045&form=6&db=m&Dopt=b ----- TITLE: The overdiagnosis of Lyme disease [see comments] AUTHORS: Steere AC; Taylor E; McHugh GL; Logigian EL AUTHOR AFFILIATION: Division of Rheumatology/Immunology, New England Medical Center, Boston, MA 02111. SOURCE: JAMA 1993 Apr 14;269(14):1812-6 CITATION IDS: PMID: 8459513 UI: 93210851 COMMENT: Comment in: JAMA 1993 Dec 8;270(22):2682; discussion 2683 Comment in: JAMA 1993 Dec 8;270(22):2682-3 Comment in: JAMA 1993 Dec 8;270(22):2683 ABSTRACT: OBJECTIVE--To analyze the diagnoses, serological test results, and treatment results of the patients evaluated in a Lyme disease clinic, both prior to referral and from current evaluation. DESIGN-- Retrospective case survey of prescreened patients. SETTING--Research and diagnostic Lyme disease clinic in a university hospital. PATIENTS--All 788 patients referred to the clinic during a 4.5-year period who were thought by the referring physician or the patient to have a diagnosis of Lyme disease. MAIN OUTCOME MEASUREMENTS--Symptoms and signs of disease, immunodiagnostic tests of Lyme disease, and tests of neurological function. RESULTS--Of the 788 patients, 180 (23%) had active Lyme disease, usually arthritis, encephalopathy, or polyneuropathy. One hundred fifty-six patients (20%) had previous Lyme disease and another current illness, most commonly chronic fatigue syndrome or fibromyalgia; and in 49 patients, these symptoms began soon after objective manifestations of Lyme disease. The remaining 452 patients (57%) did not have Lyme disease. The majority of these patients also had the chronic fatigue syndrome or fibromyalgia; the others usually had rheumatic or neurological diseases. Of the patients who did not have Lyme disease, 45% had had positive serological test results for Lyme disease in other laboratories, but all were seronegative in our laboratory. Prior to referral, 409 of the 788 patients had been treated with antibiotic therapy. In 322 (79%) of these patients, the reason for lack of response was incorrect diagnosis. CONCLUSIONS--Only a minority of the patients referred to the clinic met diagnostic criteria for Lyme disease. The most common reason for lack of response to antibiotic therapy was misdiagnosis. MESH Headings Adolescence ; Adult ; Aged ; Child ; Child, Preschool ; Diagnostic Errors ; Fatigue Syndrome, Chronic DI ; Female ; Fibromyalgia DI ; Human ; Lyme Disease *DI/DT ; Male ; Massachusetts ; Middle Age ; Outpatient Clinics, Hospital SN ; Recurrence ; Retrospective Studies ; Serologic Tests SN ; Support, Non-U.S. Gov't ; Support, U.S. Gov't, P.H.S. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8459513&form=6&db=m&Dopt=b But see below: Doctors on Lyme disease and fibromyalgia: Letter to the editor by Joseph J. Burrascano, Jr., MD from The Journal of the American Medical Association Dec. 8 1993 p.26829(2) 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 Also see comments: The Lyme Disease Network LymeNet Newsletter Volume: 1 Issue: 10 Date: 05/04/93 Response To "The Overdiagnosis Of Lyme Disease" Journal of the American Medical Association, 1993;269:1812-1816 By: Carl Brenner, Marc C. Gabriel, John S. O'Donnell . . . III. ***** RESPONSE TO "THE OVERDIAGNOSIS OF LYME DISEASE" ***** . . . "Yet under the study protocols, lack of responsiveness to antibiotic therapy is a primary criterion for the determination that active Lyme disease is not present: "We did not find age, sex, or duration of symptoms to be of help in diagnosing fibromyalgia, but the presence of tender points upon examination and lack of response to antibiotic therapy were important clues in diagnosing fibromyalgia." These criteria are clearly not consistent with the authors' own findings regarding the prevalence of treatment failures among patients whom they determined to harbor active disease; further, it is well known that every one of the primary symptoms associated with fibromyalgia or chronic fatigue syndrome (persistent headache, fatigue, myalgias, arthralgias, sleep disturbance, etc.) are common in active Lyme disease and cannot be used for differential diagnosis. Finally, in cases where the patient did improve with antibiotic therapy but relapsed afterwards, the authors conclude anecdotally that the positive response was probably due to the placebo effect." "We strongly take issue with the fact that the alternate interpretation for these treatment responses -- that borrelial infection persisted after antibiotic treatment -- is completely ignored. There are now culture-confirmed treatment failures in the medical literature for all stages of Lyme disease [9,12,16-19], sometimes even after long term, high-dosage antibiotic therapy [17-19]. Other studies employing the polymerase chain reaction have indicated the persistence of B. burgdorferi-specific DNA in the cerebrospinal fluid of many patients who remain symptomatic after antibiotic therapy [15]. In light of these findings, the authors' exclusive interpretation that treatment failure was due to misdiagnosis seems rather reckless. Although persistent symptoms after treatment by no means implies the continued presence of B. burgdorferi, unresponsiveness to short term antibiotic therapy cannot be interpreted to exclude it." . . . LymeNet Newsletter Volume 1 Issue 10 http://www2.lymenet.org/domino/nl.nsf/UID/1-10 ----- TITLE: Lyme disease associated with fibromyalgia. AUTHORS: Dinerman H; Steere AC AUTHOR AFFILIATION: Tufts University School of Medicine, Boston, Massachusetts. SOURCE: Ann Intern Med 1992 Aug 15;117(4):281-5 CITATION IDS: PMID: 1637022 UI: 92344153 ABSTRACT: OBJECTIVE: To describe the clinical and laboratory findings as well as results of treatment in patients with Lyme disease associated with fibromyalgia. DESIGN: Observational cohort study. The mean duration of observation was 2.5 years (range, 1 to 4 years). SETTING: Diagnostic Lyme disease clinic in a university hospital. PATIENTS: Of 287 patients seen with Lyme disease during a 3.5-year period, 22 (8%) had fibromyalgia associated with this illness, and 15 (5%) participated in the observational study. MEASUREMENTS: Symptoms and signs of fibromyalgia, immunodiagnostic tests for Lyme disease, and tests of neurologic function. RESULTS: Of the 15 patients, 9 developed widespread musculoskeletal pain, tender points, dysesthesias, memory difficulties, and debilitating fatigue a mean duration of 1.7 months after early Lyme disease; the remaining six patients developed those symptoms during the course of Lyme arthritis. At the time of our evaluation, late in the course of their illness, 11 patients had positive immunoglobulin (Ig) G antibody responses to Borrelia burgdorferi by enzyme-linked immunosorbent assay (ELISA), one had a positive Western blot, and the three seronegative patients had positive cellular immune responses to borrelial antigens. Four patients had abnormal cerebrospinal fluid analyses that showed an elevated protein level, a slight pleocytosis, or intrathecal antibody production to the spirochete. The signs of Lyme disease resolved with antibiotic therapy, usually intravenous ceftriaxone, 2 g/d for 2 to 4 weeks, except in one patient with persistent knee swelling. However, 14 of the 15 patients continued to have symptoms of fibromyalgia. Currently, only one patient is completely asymptomatic. CONCLUSIONS: Lyme disease may trigger fibromyalgia, but antibiotics do not seem to be effective in the treatment of the fibromyalgia. MESH Headings Adult ; Antibiotics TU ; Blotting, Western ; Case Report ; Cohort Studies ; Enzyme-Linked Immunosorbent Assay ; Female ; Fibromyalgia DT/*ET ; Human ; Lyme Disease *CO/DI/DT ; Male ; Middle Age ; Support, Non-U.S. Gov't ; Support, U.S. Gov't, P.H.S. ; Time Factors http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1637022&form=6&db=m&Dopt=b But see comments: The Lyme Disease Network LymeNet Newsletter Volume: 2 Issue: 08 Date: 05/25/94 I. LYMENET ANALYSIS: The Experts Speak Sender: LymeNet-L@Lehigh.EDU Authors: Carl Brenner, Marc Gabriel, Frank Demarest, John O'Donnell "The persistence of tired Lyme disease myths despite overwhelming evidence of their inadequacy is perhaps the greatest obstruction to progress in the field. Although these myths exist in all facets of Lyme disease research, they are still most evident in the area of treatment, where legitimate concern about the sometimes indiscriminate use of antibiotics has apparently hardened into an across-the-board anti-treatment zealotry. Certain researchers have become so intent on attacking the use of longer antibiotic treatment regimens that they end up ignoring their own observations on its efficacy. This phenomenon may have reached its zenith with the 1992 publication of a paper on Lyme disease and fibromyalgia in the Annals of Internal Medicine [4], in which the authors clearly noted that a majority of 15 post-treatment Lyme disease patients with persistent symptoms responded positively to retreatment with antibiotics and did not respond to treatment for fibromyalgia syndrome. Somehow, they still managed to convince themselves that the patients had fibromyalgia without active Lyme disease." LymeNet Newsletter Volume 2 Issue 08 http://www2.lymenet.org/domino/nl.nsf/UID/2-08 ----- TITLE: Memory impairment and depression in patients with Lyme encephalopathy: comparison with fibromyalgia and nonpsychotically depressed patients. AUTHORS: Kaplan RF; Meadows ME; Vincent LC; Logigian EL; Steere AC AUTHOR AFFILIATION: Department of Neurology, Tufts University School of Medicine, New England Medical Center, Boston, MA 02111. SOURCE: Neurology 1992 Jul;42(7):1263-7 CITATION IDS: PMID: 1620329 UI: 92319273 ABSTRACT: Lyme encephalopathy, primarily manifested by disturbances in memory, mood, and sleep, is a common late neurologic manifestation of Lyme disease. We compared 20 patients with Lyme encephalopathy with 11 fibromyalgia patients and 11 nonpsychotically depressed patients using the California Verbal Learning Test, Wechsler Memory Scale, Rey- Osterrieth Complex Figure Test, Minnesota Multiphasic Personality Inventory (MMPI), and Beck Depression Inventory. Compared with patients with fibromyalgia or depression, the Lyme encephalopathy group showed mild, but statistically significant, memory deficits on two of the three memory tests. In contrast, the patients with fibromyalgia scored significantly higher than both other groups on the MMPI scale most sensitive to somatic concerns (scale 1), while the depressed patients scored higher than the Lyme patients on the scales most sensitive to depression (scale 2) and anxiety (scale 7). Physical complaints and depression were not major factors in memory performance among Lyme patients. These data support the hypothesis that Lyme encephalopathy is caused by CNS dysfunction and cannot be explained as a psychological response to chronic illness. MESH Headings Adult ; Analysis of Variance ; Brain Diseases CO/*PX ; Comparative Study ; Depressive Disorder ET/*PX ; Female ; Fibromyalgia *PX ; Human ; Lyme Disease CO/*PX ; Male ; Memory Disorders ET/*PX ; Middle Age ; Psychiatric Status Rating Scales ; Support, U.S. Gov't, P.H.S. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1620329&form=6&db=m&Dopt=b ----- TITLE: Special concerns in Lyme disease. Seropositivity with vague symptoms and development of fibrositis. AUTHORS: Schned ES; Williams DN AUTHOR AFFILIATION: Park Nicollet Medical Center, Minneapolis, MN 55416. SOURCE: Postgrad Med 1992 May 15;91(7):65-8, 70 CITATION IDS: PMID: 1589369 UI: 92270531 ABSTRACT: Fear of Lyme disease may be as powerful as the disease itself. Patients may insist on being tested for infection although little evidence of it exists, and a positive result in the face of vague symptoms can add to the problem. Physicians should explain to these patients the differences in "background seropositivity in various geographic locations and the drawbacks of instituting unnecessary treatment. Fibrositis may evolve over time after Lyme disease infection. Many factors may trigger this disorder, but some investigators propose that it is a result of musculoskeletal pain, sleep disturbance, and anxiety over the disease. MESH Headings Antibodies, Bacterial *AN ; Borrelia burgdorferi *IM ; Fibromyalgia DI/*ET/TH ; Human ; Lyme Disease CO/*DI/TH http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1589369&form=6&db=m&Dopt=b ----- TITLE: Current recommendations for the treatment of Lyme disease. AUTHORS: Sigal LH AUTHOR AFFILIATION: Lyme Disease Center, Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey, New Brunswick. SOURCE: Drugs 1992 May;43(5):683-99 CITATION IDS: PMID: 1379147 UI: 92347202 ABSTRACT: Lyme disease is a multisystem inflammatory disease caused by infection with Borrelia burgdorferi. Soon after the tick bite which transmits the infection, the pathognomonic skin rash erythema chronicum migrans occurs in 50 to 70% of patients, often with associated symptoms resembling a 'summer cold' or viral infection. Therapy for this stage of disease consists of 3 to 4 weeks of oral therapy. The agents currently used are: amoxicillin (500 mg 3 or 4 times daily) with or without probenecid 500 mg 3 times daily, doxycycline (100 mg twice daily), or tetracycline (500 mg 4 times daily). Longer duration therapy has never been evaluated and therefore is not currently indicated. Even patients with severe early manifestations of Lyme disease should be treated orally. Later features of Lyme disease include carditis and neurological disease, which can occur days to approximately 9 months after the onset of illness, and arthritis and neurological disease which can occur weeks to years after the onset of the illness. Treatment at this stage is with 2 to 3 weeks of intravenous antibiotics, currently cefotaxime (3 g every 12 hours), ceftriaxone (1 g every 12 hours or 2 g every day) and benzylpenicillin (14 g in divided doses). There is no evidence that longer duration therapy is indicated or more efficacious. The exception to this suggestion is the patient with isolated facial seventh cranial nerve palsy; if such a patient has no other signs or symptoms to suggest Lyme disease and has normal spinal fluid, oral therapy is usually sufficient, although some physicians will give concomitant corticosteroids to hasten the resolution of the palsy. Of major consequence to the practitioner and patient is the possibility that persistent symptoms (e.g. fibromyalgia) may be caused by a process which is no longer antibiotic-sensitive. Special care in the management of so- called 'chronic Lyme disease' is crucial lest the clinician prescribes prolonged or unending courses of antibiotics for such noninfectious problems. MESH Headings Animal ; Human ; Lyme Disease DI/*TH http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1379147&form=6&db=m&Dopt=b ----- For more and up-to-date MEDLINE medical and scientific articles on fibromyalgia and Lyme disease see: Links to MEDLINE abstracts on Lyme Disease and fibromyalgia http://www.geocities.com/HotSprings/Oasis/6455/fms-links.html#MEDLINE --------------- 3. Doctors on Lyme disease and fibromyalgia: 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 --------------- 4. Lyme disease organizations on Lyme disease and fibromyalgia: From America On Lyme web site: AOLyme STATEMENT ON LYME DISEASE "Lyme disease is a multi-systemic illness. It can effect most every system in the human body and mimic many other illnesses. It is important to note that the symptoms of Lyme disease are so wide ranging that it is often misdiagnosed as illnesses such as multiple sclerosis (MS), lupus, fibromyalgia and chronic fatigue syndrome (CFS) to name a few. Lyme disease is truly the "great imitator"." See complete article at: Welcome http://members.aol.com/ameronlyme/welcome.html ----- From The National Lyme Disease Network LymeNet Newsletter Volume 6 / Number 03 / 16-MAR-98 Yale Ignores True Consequences of Treatment Denial Sender: Phyllis Mervine, President, Lyme Disease Resource Center and Editor, the Lyme Times, Jean Hubbard, Associate Editor, the Lyme Times The following review represents the opinions of the authors and not necessarily the perspectives of the editors. - A recent AP press release reported on a study from Yale University Lyme Disease Clinic which alleged: "Fear of Lyme disease causes many people bitten by deer ticks to become depressed and pursue aggressive medical treatment they may not need." . . . "Of course the Yale authors were claiming that 60% of the study patients did not have Lyme disease after all. We have heard that story before and it is patently false. They use insensitive tests and case standards so restrictive that they have all but defined the disease out of existence. So much so that a patient who has once been treated with an arbitrary 2 or 3 weeks of antibiotics, who relapses after completing those antibiotics, and continues to have symptoms, is often reclassified with fibromyalgia (for which there is no cure), given aspirin, and sent home. It is not uncommon for such patients to be closely questioned about their sex lives and referred to a psychiatrist. This in spite of the fact that the Lyme disease bacterium is known to disguise itself and hide deep in tissues. This in spite of the fact that there are many published accounts, in the peer-reviewed medical journals doctors like to quote, of treatment failures and persistence of infection despite aggressive antibiotic treatment. In no other disease are patients treated with such callous disregard, or such denial of facts which seem to stare one in the face." See complete article at: http://www2.lymenet.org/domino/nl.nsf/UID/6-03 ----- Lyme Disease Survey 1998 The Lyme Disease Foundation is conducting a survey to determine the impact and cost of Lyme disease on society. Please complete this survey form as accurately as possible and return it to me at the LDF. Information obtained may help to reduce suffering from this disease. Your participation isappreciated. Please print clearly. Thank-you, Thomas E. Forschner, CPA, MBA, Executive Director, Lyme Disease Foundation Please return to: Lyme Disease Foundation, One Financial Plaza, Hartford, CT 06103 860-525-2000 fax: 860-525-TICK 24-hr Hotline: 800-886-LYME email: Lymefnd@aol.com web: www.Lyme.org . . . 17. Were you originally misdiagnosed? Y N If yes, with what condition(s) Hypochondria Multiple Sclerosis Fibromyalgia Chronic Fatigue Alzheimer's Mental Illness Lupus Other . . . See complete survey at: Lyme Disease Survery 1998 http://www.lyme.org/survey/survey.html --------------- 5. Federal government on Lyme disease and fibromyalgia: From the Centers for Disease Control and Prevention (CDC) USA web site: EMERGING INFECTIOUS DISEASES Volume 1, Number 1, January-March 1995 Dispatches Australia Lyme Disease in Australia-Still To Be Proven! "Patients with positive serologic test results frequently have long-standing symptoms for which no other diagnosis has been established. The most common symptoms are musculoskeletal, including myalgias and arthralgias without objective evidence of joint swelling, and syndromes involving fatigue and loss of energy resembling chronic fatigue syndrome. Some patients fulfill diagnostic criteria for fibromyalgia." http://www.cdc.gov/ncidod/EID/vol1no1/russell.htm ----- From the National Institute of Dental & Craniofacial Research web iate: CHRONIC DISABLING DISEASES AND DISORDERS: THE CHALLENGES OF FIBROMYALGIA CONDITIONS ASSOCIATED WITH FMS "A number of conditions are regularly reported to be associated with FMS or to mimic its symptoms. These include, among others, rheumatoid arthritis, hypothyroidism, cervical and low-back degenerative disease, Lyme disease, chronic fatigue syndrome, sleep disorders, depression and even HIV infection." See complete article at: Chronic Disabling Diseases and Disorders: The Challenges of Fibromyalgia http://www.nidcr.nih.gov/slavkin/slav1197.htm or http://www.nidr.nih.gov/slavkin/slav1197.htm ----- Research on Chronic Lyme Disease "Since 1994, NIAID has convened meetings to address the issues surrounding chronic Lyme disease. Attending were scientists involved in Lyme disease at NIH and elsewhere, physicians and patient advocates. The participants acknowledged that determining whether chronic Lyme disease is caused by persistent infection or is a post-infectious disorder is a major research goal. Finding the answer to this question for any individual patient will have an important bearing on his or her treatment. While the participants acknowledged the difficulties in carrying out clinical trials to evaluate chronic Lyme disease, they agreed that clinical trials are necessary to resolve questions about optimal treatment." "Participants agreed that the first trial should focus on a well-defined patient population with probable B. burgdorferi infection that might respond to antibiotics. Patients could then be selected on the basis of relapse or non-response following appropriate treatment for early-stage Lyme disease. This would provide common criteria for studying and treating this multi-symptom disease. Such patients might include (1) those with persistent arthritis or persistent fatigue or fibromyalgia; (2) those with cognitive abnormalities, neuroradiculitis, headache or encephalomyelitis; and (3) those with objective evidence of continuing B. burgdorferi infection." . . . Prepared by: Office of Communications and Public Liaison National Institute of Allergy and Infectious Diseases National Institutes of Health Bethesda, MD 20892 Public Health Service U.S. Department of Health and Human Services May 1997 See complete article: Research on Chronic Lyme Disease, NIAID Fact Sheet http://www.niaid.nih.gov/factsheets/lyme.htm --------------- 6. State governments on Lyme disease and fibromyalgia [none found] --------------- 7. Other information on Lyme disease and fibromyalgia: 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 --------------- 8. Media articles about Lyme disease and fibromyalgia: Published Monday, October 13, 1997, in The State [Columbia, South Carolina] Year-around precautions in order for disease "Vital Signs" is to be commended for the recent column on Lyme disease. More education is needed. Surveys at Fort Jackson in 1990 and 1991 found infected ticks. Lyme disease is a complex illness that can be devastating and costly if it is not treated. Lyme disease can mimic many illnesses, such as Alzheimer's, fibromyalgia, lupus, chronic fatigue, mononucleosis, multiple sclerosis, etc. Unless a physician has accurate, up-to-date information, a misdiagnosis is very likely. In six years, the Lyme Disease Foundation hotline (800-886-LYME) in Hartford, Conn., received over 2,400 calls from South Carolina, while only 48 cases were reported to DHEC. The following are excellent books for everyone: Coping With Lyme Disease -- A Practical Guide to Dealing with Diagnosis and Treatment (Second Edition, 1997) by Denise Lang, and Everything You Need To Know About Lyme Disease (1997) by Karen Vanderhoff-Forschner. The public needs to be reminded often to take precautions year round. Early symptoms include any combination of the following: bullseye rash (usually at the site of tick bite), headache, flu-like symptoms (especially when it is not flu season), fatigue, stiff neck, pain in muscles or joints. These early symptoms usually disappear and serious multisystemic problems develop later, such as stroke, heart disease, arthritis, or problems with the eyes, ears, respiratory, digestive and neurologic systems. These complications can be devastating to the patients and the family, if untreated. When considering Lyme disease in South Carolina, keep in mind the warning of Dr. Edwin J. Masters of Missouri: "Absence of proof is not proof of absence!" CAROL B. BLACK Columbia System is overbuilt, not underfunded (10/13/1997) http://thestate.com/opinion/opletter/MON13LET.htm ----- Ticks pose health hazard to humans, pets By Pam Linn Associate Editor The Malibu Times September 4, 1997 "The CDC study indicated that Californians may have had their heads in the sand about the seriousness of tick-borne diseases on the West Coast. When Lyme disease was first brought to public attention in the late 1980s, early research reported that California tick infection rates were very low (0-2 percent). Although these estimates have now been revised dramatically upwards, many doctors still tell patients that Lyme disease doesn't exist here. Others think it is so rare that they won't treat people coming in with tick bites and symptoms. Few physicians bother to report their cases, so the numbers of Lyme cases reported are artificially low. Some Lyme patients are misdiagnosed with chronic, incurable diseases like rheumatoid arthritis, chronic fatigue syndrome, multiple sclerosis, and fibromyalgia, while others go to dozens of doctors before finally obtaining a diagnosis and effective treatment (antibiotics)." See complete article at: http://www.geocities.com/HotSprings/Spa/6772/california-media.txt ----- Champion Struggles with Lyme Disease From "The Burlington Free Press" (Vermont), 3/22/96 By Sam Hemingway List some of the best athletes who ever graced the Middlebury College campus and the name of cross country skier Tara McMenamy is bound to bubble up. In her four years there ending in 1982, McMenamy was a three-time All- American cross country skier, placing among the top 10 women at national championship meets in Marquette, Michigan, Lake Placid, NY, and Stowe. And that's only the skiing part of her portfolio. In 1981, McMenamy accomplished the rarity of being a two-sport All American with a 12th place finish at the national Division III cross country running championships in Kenosha, Wis. "She was tremendously dedicated, highly motivated, and very competitive, one of the top athletes I've had in 21 years here," said her coach, Terry Aldrich. "She was the kind of person you'd have run the first leg of a relay because she just would not let anyone get in front of her." So, then, how do you explain how this same woman, now Tara Sheahan and the mother of two, could just months ago lack the strength to grasp the steering wheel of her car? Or barely endure a five-minute walk? Or, worst of all, be accused by a doctor of not working hard enough at her physical therapy? "I wanted to punch the guy," Sheahan said, clenching her fist as she looked out the window of her Williston home. "I was so humiliated. I thought, 'God, you don't understand.' " Welcome to Lyme disease, or better yet, welcome to the mystery of Lyme disease. It can reduce even a person of Sheahan's documented physical ability and motivation to intolerable pain and depression - and still be misunderstood and misdiagnosed by doctors. Mystery, in fact, is putting it mildly. According to state and federal experts, 21 years after its discovery in Lyme, Connecticut, there is still no sure-fire test to detect it or medicine to cure people of it. What's more, as Sheahan found out, the tick that carries the Lyme bacteria and attaches itself to a person is often too small to be detected. And, finally, the disease can mask itself in symptoms that copycat other maladies. That also fits Sheahan's life story this past year - a series of symptoms including tendinitis, jaw pain, hair loss, earaches, mood swings, weight loss, sleeplessness, memory loss and depression that no specialist could explain. Her orthopedic surgeon advised more physical therapy and, later, electric shock. Her rheumatologist figured it was simply muscle hyperextension. Her gastroenterologist surmised it was fibromyalgia. But there was one thing all of them were sure of: It wasn't Lyme disease. "One doctor actually told me no, we don't have Lyme disease in Vermont," she said. But, ahem, we do. Adccording to state Health Department figures, Vermont has had 65 recorded cases, most of them "imported" from elsewhere - although that seems dubious since ticks don't wear license plates. Nationally, the number of recorded cases through 1995 is 80,206. Sheahan, who things she was bitten while raking her yard last spring, finally found out she had "LD" after traveling to Colorado for testing. Now on antibiotic medicines, she is finally feeling better. She's also convinced the disease is far more prevalent in Vermont than the numbers indicate and she might be right. As Gordon Nielson, retired University of Vermont entomologist, put it: "Rabies has got everyone flat out. The state is not as able to get as much out on Lyme disease because of limited resources." Sheahan said she wants to change that. Don't be surprised if she succeeds. After all, that's what champions do. Champion Struggles with Lyme Disease http://nr-atp.cit.cornell.edu/~joy/lymefreepress.html ----- Lyme Disease Up Close and Personal from "Drug Topics", the Newsmagazine for Pharmacists, November 20, 1995 (Cover story) Senior associate editor Katie Rodgers, R.Ph., learned about this enigmatic disease the hard way. . . . The Enigma of Lyme "Often called "the great imitator," Lyme disease can be a difficult infection to diagnose. The symptoms are vague and are frequently mistaken for other illnesses, such as multiple sclerosis, fibromyalgia, and chronic fatigue syndrome, among others. Although considered the hallmark of Lyme disease, the characteristic EM occurs in only 60% to 80% of Lyme cases, which can cause the diagnosis of Lyme disease to be missed." See complete article at: Lyme Up Close [NOTE: Link not available as of 1 June 1999] http://www.eci.com/torski/Lyme-KRodgers.html ----- SOMETHING OLD, SOMETHING NEW LYME DISEASE - DON'T LET IT HAPPEN TO YOU By Ron Ferris, Calgary , Alberta Ron Ferris has been a research assistant for the Vancouver Lyme Borreliosis Society for several years. He has spent nearly a decade learning about Lyme disease and has published numerous articles on this subject. This article appeared in the Calgary Herald, September, 1995 There's goods reason why Lyme has been called the New Great Pretender. Leading misdiagoses for LD include juvenile rheumatoid arthritis, rheumatoid arthritis, fibromyalgia, systemic lupus erythematous and chronic fatigue syndrome. Attention deficit disorders and mild to severe psychiatric disorders also have had Lyme as the actual underlying cause. See complete article at: LYME DISEASE - DON'T LET IT HAPPEN TO YOU http://www.x-l.net/Lyme/ferris.htm ----- From The National Lyme Disease Network LymeNet Newsletter Volume 1 - Number 02 - 2/05/93 SOURCE: Science Magazine ISSUE: Vol 257, September 25, 1992, p1845 [LETTERS THE EDITOR] HEADLINE: Lyme Disease: Asking the Right Questions (Ed note: This letter appeared as a follow-up to an article reporting on the controversy at the Fifth Int'l Conference on LD. At that conference, the organizers tried to remove certain abstracts that allegedly lacked "scientific merit." Pressure from patient groups had the abstracts re-instated. The offending abstracts primarily dealt with issues of chronic infection.) I would like to elaborate on some of the issues discussed in Marcia Baringa's article about the controversy at the Fifth International Conference on Lyme Borreliosis (News & Comment, June 5, p1384). The academic Lyme disease researchers would have us believe that there is a methodological conflict between their own studies and their clinician opponents' "anecdotal" findings. Nothing could be further from the truth. Although criticisms of the offending abstracts submitted before the conference were not entirely without merit, the presumption that the existing body of academic Lyme disease literature represents some sort of scientific ideal is ludicrous. The central flaw in the current Lyme disease orthodoxy is the persistent myth of "post-Lyme syndrome." This condition was suggested by researchers to account for the troublesome fact that many patients do not fully recover after supposedly curative antibiotic therapy, but continue to suffer from chronic headaches, cognitive deficits, debilitating fatigue, and parenthesis. These persistent symptoms are explained away by the fibromyalgia syndrome [1], which provides a convenient sense of closure to researchers but leaves patients in the throes of devastating illness. There is ample evidence to retire this model in favor of one involving chronic infection. Some researchers have successfully cultured Bb from the skin or cerebrospinal fluid of patients after antibiotic regimens generally accepted as curative by academic researchers [2], while other clinicians have recovered the bacteria from patients who have undergone even long-term high-dosage antibiotic therapy [3]. In addition, researchers have demonstrated that Bb can penetrate and persist within human endothelial cells [4] and fibroblasts [5]. Yet most academic researchers continue to deny the prevalence of chronic infection in Lyme disease. There are also flaws with the academicians' diagnostic protocols. Lyme disease presents physicians with a diagnostic dilemma because its symptoms are so diverse and the commonly available serological tests used in diagnosis are known to be unreliable. Thus, while it may seem reasonable for researchers to insist that clinicians confine their studies of long-term therapy to patients who are demonstrably seropositive, it is scientifically -- and morally -- indefensible to advocate a rigid adherence to this overly restrictive diagnostic procedure in a clinical setting to determine treatment. Arbitrarily withholding antibiotic therapy from all seronegative patients guarantees that an unacceptably high percentage of them will go on to develop incurable late-stage Lyme disease. Such a policy also can lead to the under reporting of the real incidence of Lyme disease. The artificially low figures are in turn used by researchers to reinforce their claim that Lyme disease is actually quite rare. Thus, the cycle of denial is complete. The facts, of course, strongly suggest that Lyme disease is seriously under diagnosed. New testing techniques presented at the international conference [6] indicate that Lyme disease will be found to be significantly more common than previously recognized. The rejecting of the offending abstracts at the conference had much more to do with their conceptual challenge to current paradigms in Lyme disease research than with their alleged scientific deficiencies. Good science is as much about asking the right questions as it is the sensible pursuit of answers, and many Lyme disease patients do not feel that the mainstream Lyme disease researchers are asking the right questions. The existing theories need to be reevaluated in light if the emerging evidence on chronic infection in late Lyme disease. Carl Brenner Lamont-Doherty Geological Observatory of Columbia University Palisades, NY 10964 References: [1] L.H. Sigal, Am. J. Med. 88, 577 (1990) [2] V. Preac-Mursic et al., Infection 17, 355 (1989) [3] K. Liegner, C. Rosenkilde, G Campbell, T. Quan, D. Dennis, "Culture confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States" (Abstr. #63, Fifth Int'l Conference on Lyme Borreliosis, Arlington, VA, 1992); E. Masters, P. Lynxwiler, J Rawlings, "Spirochetetemia two weeks post-cessation of six months of continuous p.o. amoxicillin therapy" (Abst. #65 Fifth Int'l Conference on Lyme Borreliosis, Arlington, VA, 1992) [4] Y. Ma, A. Sturrock, J. Weis, Infect. Immun. 59, 671 (1991). [5] Th. Haupl et al., "Persistence of Bb in chronic Lyme disease: altered immune regulation or evasion into immunologically privileges sites?" (Abstr #149, Fifth Int'l Conference of Lyme Borreliosis, Arlington, VA, 1992) [6] K. Liegner, C. Garon, D. Dorward, "Lyme borreliosis studies with the Rocky Mountain Laboratory (RML) antigen capture assay in urine" (Abstr #104, Fifth Int'l Conference on Lyme Borreliosis, Arlington, VA, 1992) http://www2.lymenet.org/domino/nl.nsf/UID/1-02 ----- From the archives of NewsLibrary: http://www.newslibrary.com//default.htm Truncated articles matching ""lyme disease" AND fibromyalgia: Published on 10/14/97, THE STATE CONSTANT PRECAUTIONS IN ORDER FOR DISEASE * "Vital Signs" is to be commended for the recent column on Lyme disease. More education is needed. Surveys at Fort Jackson in 1990 and 1991 found infected ticks. Lyme disease is a complex illness that can be devastating and costly if it is not treated. Lyme disease can mimic many illnesses, such as Alzheimer's, fibromyalgia, lupus, chronic fatigue, mononucleosis, multiple sclerosis, etc. Unless a physician has accurate, up-to-date information, a misdiagnosis is very likely. [end of truncated article] ----- Published on 08/10/97, DETROIT FREE PRESS LYME DISEASE STILL A STRUGGLE FOR ROB KRESS I'm always being asked "Whatever happened to" about former local radio and television personalities. In recent years, former WXYZ (Channel 7) weathercaster Rob Kress is the one I get asked about most. He's the fellow with that distinctive orange-red curly hair. Kress left the air four years ago because of Lyme disease, an acute inflammatory disease caused by deer tick bites. He'd been with the station for 16 years. [end of truncated article] ----- Published on 05/19/97, BOSTON GLOBE LYME DISEASE: IT'S FRUSTRATING, MYSTIFYING AND VERY SNEAKY Lyme disease is one of the most insidious illnesses around. It gets you while you're doing something pleasant -- like walking in the woods on a summer day. The tick that carries it is so tiny -- the size of the period at the end of this sentence -- that you can barely see it. And seeing it is important, because if you pick it off with tweezers within 24 to 48 hours, chances are you won't get sick. [end of truncated article] ----- Published on 05/12/97, INTELLIGENCER JOURNAL (LANCASTER, PA.) INCIDENCE OF LYME DISEASE GROWING IN PENNSYLVANIA Lyme disease is the most common insect-transmitted illness in the United States and it's on the rise - southeastern Pennsylvania, in particular, is a high-risk area. But despite the spread, many sufferers are having trouble getting an accurate diagnosis, effective treatment and, in some cases, full insurance coverage. The national Lyme Disease Foundation argues only 10- to 15 percent of the actual cases of Lyme disease are reported to the national Centers for Disease Control, primarily because of [end of truncated article] ----- Published on 02/20/95, PORTLAND PRESS HERALD WHEN LYME DISEASE INVADES THE BRAIN, SPINAL SYSTEM A young woman, whose doctor declined to identify her, thought she was going crazy. Suddenly, this once perfectly healthy college freshman developed severe anxiety, panic attacks, insomnia and loss of appetite. A doctor and a psychologist at her college's health service recommended rest for what they thought were problems in adjusting to being away from home. [end of truncated article] ----- Published on 02/19/95, ST. PAUL PIONEER PRESS HEADLINE: OFTEN, LYME DISEASE IS HARD TO DIAGNOSE AND DIFFICULT TO TREAT TEXT: He told of a 47-year-old man who experienced depression and memory problems as his main signs of Lyme disease, symptoms that responded well to intravenous antibiotics. The symptoms recurred five months later, but he was not treated a second time. He developed a type of dementia that required hospitalization. and He died a few years later. An autopsy found Lyme spirochetes in a degenerated part of his brain. Children also can develop a neurological form of Lyme disease that often shows up as [end of truncated article] ----- Published on 06/21/93, THE EVANSVILLE COURIER 'VICTIMS' SAY THE PAIN IS REAL Mary Jo Hipp would like to invite the author of that report to try coping with her illness for awhile. The 34-year-old Haubstadt, Ind., mother of four had always been healthy until she was bitten by a tick three years ago. Since then she's been sick most of the time. [end of truncated article] --------------- 9. Lyme disease patients previously misdiagnosed with fibromyalgia: Sources: Google Usenet Advanced Search http://groups.google.com/advanced_group_search Search the LymeNet Flash Discussion http://www2.lymenet.org/domino/flash.nsf/$$search ----- Cathy Morrissey http://www.lymealliance.org/html/march.html Also see Cathy Morrissey on Lyme disease at: http://www.ocean-beach.com/_tick/tick_morrissey.htm mailto:cfmorriss@aol.com ----- Mary Shadley mailto:Shadey503@aol.com TEN YEARS WITH LYME DISEASE FOR CALHOUN COUNTY, MICHIGAN RESIDENT http://www.lymealliance.org/PersonalStories/PersonalArchive1/Personal6/personal6.html ----- Subject: Re: SPECT SCANS Date: 1 May 1999 13:33:23 GMT From: debtoo2773@aol.com (Debtoo2773) Newsgroups: sci.med.diseases.lyme I was diagnosed with lyme in '92, horrid fatigue, treated, relapse, diagnosed fibromyalgia, sleep study in '95 showed mild sleep apnea,alpha waves in the delta very typical of fibromyalgia. Take .50xanax at night knocks me out. very little rem sleep.Usually need to nap about 3pm. Each day seems like 2 days. Sleep study may reveal specific problem,but lyme was the underlying cause of the problems. Improvement with iv oral flagyl has gotten problems under control. best to all deb [No longer available at sci.med.diseases.lyme archives] ----- Subject: Re: Has Anyone Tested Positive For Epstein Barr? Date: 25 Feb 1999 00:00:00 GMT From: hipTopper@webtv.net (Shara Topper) Newsgroups: sci.med.diseases.lyme My daughters first diagnosis was chronic EB virus. Then it was CFS, then fibromyalgia, and finally, five years later, Lyme disease. Wish they"d known at the beginnig!!! Re: Has Anyone Tested Positive For Epstein Barr? http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=86b50a2b10d8114e,8&seekm=964-36D61F6C-2%40newsd-284.iap.bryant.webtv.net#p ----- Subject: Re: Fibro, Lupus, Lyme! Date: 23 Feb 1999 00:00:00 GMT From: bailieboy@aol.com (BailieBoy) Newsgroups: sci.med.diseases.lyme Hi Allison, I went through the very same thing. Had rising sed rates for two years and was misdiagnosed with both fibromyalgia (which does not cause high sed rates) and lupus. I was even treated for lupus although I never had a positive ANA test. It amazes me that I finally diagnosed myself and asked my rhumatologist to test for Lyme. The western blot came back positive and it turns out I have had lyme for my guess maybe 8 years!!!!!!!!!!!! I am starting IV Rocephin this afternoon. I feel so angry it went on for so long and now I have serious neruologic problems. Be assertive with your physicians!!! You really have to be your own advocate. Good luck. Lisa Re: Fibro, Lupus, Lyme! http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=b77a407dc0c41eb5,5&seekm=19990223145941.24212.00000038%40ng01.aol.com#p ----- Subject: just diganosed -now what? Date: 11 Dec 1998 00:00:00 GMT From: Gloria.M.Comstock@dartmouth.edu (Gloria M. Comstock) Organization: Dartmouth College Newsgroups: sci.med.diseases.lyme Hello, I'm new to this. I have Fibromyalgia and have been being treated for that. Inspite of everything, I just wasn't getting anywhere. My doctor said at this point, it was worth trying a blood test for Lyme. He just called - both tests come back positive. TOday is Friday and I wasn't scheduled to go back until 12/30 - but he wanted me in sooner - so I go on Tuesday, 12/15. All I know is that we're going to talk antibiotics. Anyone with suggestions? Glo just diganosed -now what? http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=5dabafe392a956be,4&seekm=755sei%245jk%241%40dartvax.dartmouth.edu#p ----- Name: BRUCE Email:REDZ@PRODIGY.NET NY Date: Thursday, October 15, 1998 at 02:02:56 Comments: I HAVE HAD LYMES FOR 2 YEARS.IT WAS MISDIAGNOSED FOR CHRONIC FATIGUE SYNDROME,FIBROMYALGIA,AND SOME KIND OF SCLEROSIS.I KNEW IT WAS LYMES BECAUSE OF BULLSEYE BITE & SYMPTOMS,BUT COULD NOT FIND A DOCTOR WHO WAS LITERATE IN THIS DISEASE.LUCKYILY I FINALLY DID.CURRENTLY I AM BEING TREATED WITH I.V. ANTIBIOTICS AND STARTING TO FEEL BETTER.I KNOW HOW HARD IT IS TO STAY STRONG,BUT DON'T GIVE UP KEEP FIGHTING TIL YOU FIND A GOOD DOCTOR WHO BELEIVES IN LONG TERM ANTIBIOTICS! Time For Truth Guestbook http://www.lexmall.com/LYME/Guestbook/guestbook.html ----- Subject: Fibro vs. Lyme Disease Date: 18 May 1998 00:00:00 GMT From: Sandra Smith Newsgroups: alt.med.fibromyalgia Recently after seeing a new physician at a pain management clinic, I was referred to a neurologist to be tested for Lyme disease. The physician at the pain clinic told me that due to my history and existing "symptoms" that I shoud be checked for Lyme disease to rule it out as a causative factor in the all over body pain I have had since I was 40. I had no problem with being checked for Lyme as I was and am 100% committed to resolving the cause of the pain rather than taking pain medication the rest of my life. The middle of last month the special blood tests results confirmed me positive for Lyme disease and now I am receiving antibiotic treatment for this condition which like fibro, cannot be cured. http://cassia.jerseycape.net/essay.htm http://www.lymenet.org/ http://lymealliance.org/html/medical.html sci.med.diseases.lyme (news group) In checking old medical records, I found where I had been dx'd as long ago as 1985 as having fibro but the physician treating me never bothered to share this information with me. I was not "aware" of fibro until a family member found the alt.med.fibromyalgia ng and told me about it in 1995. I then saw a rhumatologist in October and received a confirming dx of fibromyalgia. I have had countless blood testing performed since I was 28 and first started having joint pain in all movable parts that was not caused by RA. I always assumed that the normal blood testing I had done would show up if I had Lupus or Lyme, both conditions along with MS and some other diseases are often misdiagnosed when the patient actually has Lyme disease. This is not the case. It takes a Lyme Literate Physician, special testing, and good clinical obervation as well as detailed medical history to diagnose Lyme. The bacteria that cause Lyme disease can and do invade all organs resulting in many many symptoms that are often ignored, especially by physician's who have treated you for years. Many of the symptoms I've had over the years I stopped mentioning to my physicians because they didn't seem to think they were important or anything to be concerned about. Not! Please do check out these URL's and at least read the information and a special essay written by a physician who had Lyme disease. When I read this essay after being d'xd with LD, I thought to myself, these are the things I have been trying to get doctors to pay attention to for years and years. I am just concerned that others like me may not have been checked properly for the bacteria causing Lyme disease and that is the reason for my post. Sandra Smith Fibro vs. Lyme Disease http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3552986e546ddfde,7&seekm=35603C31.FA58C599%40ibm.net#p ----- Subject: FMS Diagnosis & Complacency (A Cautionary Tale) Date: 26 Apr 1998 00:00:00 GMT From: "Lana Z." Newsgroups: alt.med.fibromyalgia Although I think most people will assume this message does not apply to them, I still feel a moral obligation to post this information. After many years of muscle pain and an ever-growing list of symptoms, I was finally diagnosed in late 1996 with FMS and felt relieved that someone had put a name to this "thing" I had suffered from for so many years. In May of that year I started going to an alternative MD who was treating me with vitamin and hydrogen peroxide IV's and managed to turn my health around. As I started to feel better I tapered off and eventually ended the IV's and just continued on oral supplements. At the end of 1997 I decided to see an alternative DO, primarily because of a severe backache of many years duration that never seemed to abate. In my first office visit he asked me how many times a had been tested for Lyme. I replied, "Never." I though it an odd question, since I live in New York City and had previously lived in Madrid, Seville and London--not exactly rural locales. Well, my Western Blot for Lyme came out positive, I took antibiotics for 6 weeks, was re-tested and still came out positive. The antibiotics did not help and in fact my previous symptoms are returning. I am presently waiting for approval from my insurance company to have a mid-line catheter installed so I can have IV antibiotic therapy for 21 days. I have since discovered that some alternative doctors use hydrogen peroxide IV's to treat Lyme because of its ability to kill bacteria, yeasts, viruses, etc. and to raise body temperature. In retrospect, I attribute the fact that I was so much better during hydrogen peroxide therapy to my having Lyme Disease. If you--like me, think you couldn't possibly have Lyme because you live in a city, please be aware that: - numerous bacteria- infected ticks were found in a large park in New York City, - it has been determined that fleas can carry the bacteria and possibly mosquitoes, - Lyme Disease can lie dormant for many years, - about 50% of the infected population do not remember being bitten by a tick, - nymphal ticks are no bigger than a poppy seed and very hard to spot, - 40% of those infected do not develop a bullseye rash. I found it extremely difficult to accept the fact that I have Lyme Disease--even after my second Western Blot came out positive. Only after doing a lot of research on-line and exchanging E Mail with other Lyme sufferers did I reconcile myself to the fact. As it happens, I have about 75% of all possible symptoms for hypothyroidism (Lyme can affect the thyroid) and have low body temperatures (the spirochetes like it cold). I have degenerative disk disease (one of the symptoms of Lyme is arthritis). I had optic neuritis in 1990 and began looking for possible MS (Lyme can also cause optic neuritis and other vision problems). My point is that the diagnosis you get depends very much on what type of doctor you see. So many diseases have the same or overlapping symptoms that a diagnosis is very much like the story of the blind men and the elephant. I urge everyone to remember that FMS is a syndrome and not a disease in itself. A syndrome is just a collection of common symptoms for the convenience of doctors. It does not necessarily imply a common cause and as you know--the causes of fibromyalgia, in spite of much speculation, are unknown. I tend to agree with my doctor who believes that FMS is just a convenient label used when the cause is unknown. Before anyone misinterprets what I am saying, let me underline that this is not the same as saying that it's all in your head; the pain is real, the symptoms are real, but there will be no cure until the underlying cause is determined. Relief of suffering through the use of muscle relaxants and other pharmaceuticals does not address the root cause. Lyme is a spirochetal disease that can affect your entire body (another spirochetal disease is syphilis) with devastating effects. My neurological symptoms are really scary and an embarrassment at work. I couldn't remember my mother's maiden name yesterday and have since written it down. Lyme can affect your heart, necessitating a pacemaker. If you're curious to see the Lyme checklist, please go to: http://cassia.jerseycape.net/Checklist.htm Then read an essay written by a doctor who himself had Lyme: http://cassia.jerseycape.net/Essay.htm Even if you don't have Lyme, don't assume that a diagnosis of FMS is the end of the road. Always be on the lookout for the cause and don't attribute ALL your symptoms to fibromyalgia. You could have more than just one medical problem at the same time. Assuming that all your symptoms are due to FMS could keep you from receiving treatment for something that IS curable. Regards to all, Lana To reply, remove SPAM FREE from E Mail address. FMS Diagnosis & Complacency (A Cautionary Tale) http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=2f04ad5d044ffa1f,12&seekm=6hvr6u%24i6m%40news.dx.net#p ----- Subject: Re: Lyme/Fibromyalgia Date: 08 Oct 1997 00:00:00 GMT From: bdcz@aol.com (BDCZ) Organization: AOL http://www.aol.com Newsgroups: sci.med.diseases.lyme Hi, Having been diagnosed with fibromyalgia by my MD I empathize with you and your daughter. I do not have fibromyalgia and never did but, rather, have ongoing Lyme infection. Alot of MDs are not prepared to believe this or, worse, are ignorant. Find a Lyme MD as soon as you can. [Doug Bunnell - Wilton Connecticut Support Group] Re: Lyme/Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3d0cf6430666a189,0&seekm=19971008125900.IAA13992%40ladder02.news.aol.com#p The above message was a reply to: Subject: Lyme/Fibromyalgia Date: 04 Oct 1997 00:00:00 GMT From: dick4sails@aol.com (Dick4sails) Newsgroups: sci.med.diseases.lyme 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 Lyme/Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3d0cf6430666a189,0&seekm=19971004052500.BAA25998%40ladder02.news.aol.com#p ----- Subject: Re: MED: Lyme Disease Date: 18 Aug 1997 00:00:00 GMT From: Chris Ruggiero Newsgroups: alt.med.fibromyalgia Dear Lorenzo, I apologize for this being so long. While I am responding to the author personally, I thought I should also post this response to the list for anyone else's benefit with questions on Lyme disease. I have SO much to say on this subject, but I will try my best to be brief!!! Here's my story......about 5 years ago I became ill. It hit me like a ton of bricks. My symptoms included, but were not limited to the following: ---rapid heartbeat & shortness of breath, waking me up at times ---complete lethargy....slept around the clock for over 3 weeks straight ---did not eat/constant bouts of diarrhea, nausea, vomiting ---would awaken with intense dizziness ---joint and muscle pain ---headaches ---difficulty sleeping ---numbness and tingling sensations ---confusion/lack of concentration ---stiff neck/jaw pain & stiffness ---ringing in ears, leading to an off-balance feeling and intense dizziness ---sore throat ---speech difficulty ---panic attacks ---twitching of muscles and bad muscle spasms ---weakness of limbs ---sensitive to light (eyes, not skin) I was treated for Lyme disease about 3 months after all this started (no other doctor could diagnose me....my tests were negative....until I found a Lyme literate doctor). After about a year of treatment with oral antibiotics, I improved. Then other things started to bother me.....similar to the Lyme, but somehow different. My doctor then diagnosed me with Fibromyalgia. It is not uncommon for people with Lyme disease to develop it,esp. if they have a predisposition to it. The reason we develop FMS is because of the Lyme, esp. the disruption in normal sleep patterns that it can cause, aside from the trauma of the disease itself. I went to a rheumatologist after my Lyme doc diagnosed me, just to be sure. What is it with rheumatologists????? He also told me that I probably never had Lyme!!!! I gave him my written history, which included my list above and how it just HIT ME out of the blue. He still felt it was probably always FMS. And he didn't think MPS could be a chronic, body-wide problem. Well, I eventually fired him! He did nothing for me. Gave me meds that gave me bad side effects and wouldn't offer me any other help. I went back to my Lyme doc (who is an osteopath and family physician, not just a Lyme doc). His wife has FMS, so he is familiar with it. He treated me, I felt somewhat better for a while, then it hit me again in January of this year. Testing is terrible, as you know. Did you have a titer and a Western Blot done? Did you test positive more than once? False negatives ARE far more common than false positives. I tested negative for the past 4 years. This year I finally tested POSITIVE, several times on my IgM of my Western Blot. When these symptoms returned this year, I became completely convinced that the rheumatologist knew NOTHING about Lyme disease, and I also became convinced that it was Lyme disease that hit me nearly 5 years ago. Now that I am positive, have had IV antibiotics, I can tell the difference between FMS and Lyme. They are similar, but they are not the same. The way I feel now is how I felt 5 years ago.....and it's definitely Lyme disease! The FMS is secondary to the Lyme. I know I have that and MPS, too, but no one will tell me that I DO NOT have Lyme! I hope this helps you. If you have any questions or just want to talk, feel free to e-mail me. Good luck to you! Hugs, Chris :-) Re: MED: Lyme Disease http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=7d2f358ca9bfb99c,3&seekm=970818102955_282030846%40emout05.mail.aol.com#p ----- Subject: Does you child have Lyme...maybe! Date: 01 Aug 1997 00:00:00 GMT From: alerts@aol.com (ALERTS) Newsgroups: sci.med.diseases.lyme Having had LD for what could be 7 years (originally diagnosed as chronic fatigue and fibromyalgia) and dealing with chronic and sometimes frightening symptoms for the last year, I have become quite sensitive to other peoples' physical complaints. I once mentioned to a LLD that I guessed I was "Lyme paranoid." "No your not", he said "You have it." But I guess that this paranoia has served me well in terms of my children and I wanted to pass on my experience . Two of my kids, a 14 yr. old girl and a 7 yr. old boy have had varying physical complaints over the last 6-9 mos. or so, although both very different. My daughter has had occassional headaches, a couple of bouts of low grade fevers, a painful knee that would appear for 3-4 days, then a month latter it would be wrist (she does play sports but this would not be following a game), a few sinus infections or ear infections (never got them much as a child). She had always been a bit of a complainer when it came to her health and I attributed the pain stuff to gym and the others to kid virus'. My son had complained of stomach pain, with and without diarrhea that would be, again, on for 2-4 days then off for a week or even a few. Very occassionally he would have a headache or be tired but was usually energetic and lively as was my daughter. I will add that he did have Bells Palsey about a year and a half ago and was treated for 6 weeks with amoxicillin and it disappeared. This spring I had spoken to a mother who's child had had very mild complaints, which she attributed to adolescence, and had suddenly come down with seizures and had to placed in a wheelchair. It was Lyme. After some careful thought I decided to bring my two to a Lyme Literate Pediatrician and.....they both tested positive! In fact, this was just 3 weeks after my daughter's own doctor had done an Elisa locally which was negative. Now both kids are on Ceftin and seem to be doing fine..In fact, I just had my third child, an asymptomatic 11 yr old, was just tested and both his WB and Elisa were equivocal so he's being evaluated for treatment. My main point is that if I hadn't been so sensitive to this illness, it would probably have never occured to me to seek out a specialist to rule it out. LD could have sat in my childrens' systems, quietly multiplying and gathering force, while preparing to wreak havoc on their lives at some latter date. If you have any suspicions at all, that your children, or anyone elses, could possibly be harboring this horrid disease, please speak out, if only for the peace of mind of hearing the word "negative". Take care, Carol Does you child have Lyme...maybe! http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=f7b920bc29ef5009,5&seekm=19970801184000.OAA28797%40ladder02.news.aol.com#p ----- Subject: Re: MS and Fibromyalgia Date: 14 Oct 1997 00:00:00 GMT From: John Haynes Newsgroups: alt.support.mult-sclerosis [Kathy Cavert Kansas City, MO - deceased] My Lyme was once diagnosed with lupus, fibromyalgia, MS, etc. and guess what. IV Rocephin for 16 weeks completely brought my brain, body, pain, memory, confusion, dizziness, headache, backache, paresthesias, weakness, stiffness and so on back to feeling normal again. It was a bacteria afterall, causing all the hubbub. Re: MS and Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=28c349a08a6ea7c7,21&seekm=34430E89.4BB2%40sprintmail.com#p ----- Subject: New Dx and a Request for Info Date: 21 Mar 1997 00:00:00 GMT From: Trish Newsgroups: alt.med.fibromyalgia Hi All: I have been recently received a diagnosis of Fibromyalgia and Lyme Disease. Currently, I take Paxil, Klonopin, Elavil, prescription- strength ibuprofen called Daypro, Doxycycline and FiberCon. The doctors are also going to do a chest x-ray for a condition they expect to be something called Sarcoid. (Anyone ever heard of this?). It took about a year and a half to get thisdiagnosis - I went to Dr to Dr and I was told I was either neurotic or had a low-grade unidentified viral or bacterial infection. My blood tests showed only an increase in the sedimentation rate (20 is normal for a women - mine was 44). It was extremely frustrating since I KNEW something was wrong. What is the matter with Dr's? Why are they so damned arrogant!? And so dismissive of their patients concerns/feelings? (Thanks for letting me vent!) Finally, after four months of chronic, disabiling diarrhea I went to yet another Dr who was not arrogant and more willing to listen to me. He sent me to a GI and a rhematologist(sp?). The GI said I had Irritable Bowel Syndrome. The rhematologist said I have FMS after doing the trigger point test on me, later my blood test showed the Lyme disease. This was the FOURTH Lyme Disease test I had taking and this one was positive. I have every syndrome associated with FMS: pain, sleep disorder, IBS, TMJ, chronic headaches, and PMS. I feel like I'm a football player who has been tackle from three different directions by three huge, ugly guys! The worst part is that these Dr's had ME convinced that I was neurotic - I was being treated for depression prior to all these phsyical problems started. Then again maybe the depression was caused by the physical problems - who knows? But I look back over the past year and a half and realize most of the time I was dealing with an overload of guilt and self-disgust when I could not go to work or doing the all the activities family and friends expected of me because I was feeling so ill. And I was blaming myself for my lack of fortitude, stamina, drive, etc. Anyway, I not writing this to elicit pity or sympathy. I just wanted to tell my story. The purpose for writing is for help in obtaining information and/or opinions about organizations, groups, chat rooms that I can join or learn more from. I heard about the Fibromyalgia Network Newsletter and the have bought the book by Miryam E. Williamson _Fibromyalgia: A comprehensive approach_. What chat channel is available? And does anyone know of a support group in the New York City Area? Any info about Lyme disease? I have found alot on the Internet but I would appreciate any suggestions. Most importantly, any info on going on disability from work. Experience with employers and social security. Any problems with self-image? I'm worried that I will feel useless, become more depressed, because I will be purposeless.... I'm a computer consultant and I'm worried that even a brief short-term disability will have a bad effect on my career. Again, thanks listening to my story... Trish New Dx and a Request for Info http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=e919ee868cd40516,1&seekm=33321CCE.52CA%40columbia.edu#p --------------- Resources for Lyme disease: Lyme Disease Foundation (LDF) http://www.lyme.org/ The LDF may be contacted for a doctor referral in your area. mailto:lymefnd@aol.com The Lyme Disease Network http://www.lymenet.org/ Lyme Alliance http://www.lymealliance.org/ Lyme Disease Information Resource (LDIR) http://x-l.net/Lyme/ THE NEW LYME DISEASE Diagnostics Hints and Treatment Guidelines for Tick Borne Illnesses by Joseph J. Burrascano, Jr., M.D. - 12th Edition, 1998 - (complete - 23 pages) http://www.geocities.com/HotSprings/Spa/6772/burrascano-12th.txt or http://guidelines.LymeNet.org/ (complete) or http://www.lyme.org/otherdis/burrascano.html (individual section links) Lyme Disease - Conn's Current Therapy - 1997 (7 pages) Method of Joseph J. Burrascano, Jr., M.D. http://www.geocities.com/HotSprings/Spa/6772/conns.txt Ask NOAH About: Lyme Disease http://www.noah.cuny.edu/lyme/lyme.html Cheryl Orlowski's Lyme disease web page http://www.aero-vision.com/~cheryl/lymes.html Lyme Disease Risk Assessments - done by the U.S. Army (1983-1996) http://www.utech.net/users/10766/lyme.htm Lyme Disease in the United States and Canada http://www.geocities.com/HotSprings/Spa/6772/lyme.html Lyme Disease Resources http://www.geocities.com/HotSprings/Spa/6772/resources.html --------------- Resources for fibromyalgia: Fibromyalgia resources that also mention Lyme disease: Lyme disease associated with fibromyalgia http://www.vrainn.com/Stuff/Fibro/FMlyme.html FIBROMYALGIA AND LYME DISEASE http://www.futureone.com/~hunter/ftext16.htm Fibromyalgia Syndrome Page http://www.muskoka.com/~ntappin/FMS.html ME & FM Manual-Chronic Fatigue S,Fibromyalgia,CFS,FMS,MCS http://www.geocities.com/CapitolHill/1544/ Fibromyalgia - Coping with the pain http://www.mayohealth.org/mayo/9710/htm/fibromya.htm Fibromyalgia: A Comprehensive Approach, chronic pain, fatigue, insomnia, irritable bowel, sleep disorder, children http://www.shaysnet.com/~wmson/toc.htm Fibromyalgia: The Muscle Pain Epidemic - Is it ME by Another Name?-Part1 http://www.healthy.net/hwlibraryarticles/chaitow/fibromy/fibro1.htm The concurrence of lupus and fibromyalgia http://www.myalgia.com/off/lupusfm.htm FMAGW General Information About Fibromyalgia http://www.fmagw.org/general.html FIBROMYALGIA http://www.apc.net/rodbush/fibro.htm The Muscle Pain Epidemic - Is it ME by Another Name? http://www.healthy.net/library/articles/chaitow/fibromy/fibro1.htm Chronic Disabling Diseases and Disorders: The Challenges of Fibromyalgia http://www.nidr.nih.gov/slavkin/slav1197.htm http://www.nidcr.nih.gov/slavkin/slav1197.htm ----- Other resources for fibromyalgia: NORD - Fibromyalgia http://www.stepstn.com/cgi-win/nord.exe?proc=GetDocument&rectype=0&recnum=266 Fibromyalgia http://nova.vrainn.com/Stuff/Fibro/ Colorado HealthNet - Fibromyalgia and Chronic Fatigue Syndrome Center http://www.coloradohealthnet.org/fibro/fibro_center.html FIBROMYALGIA - Information And Resources http://www.sunflower.org/~cfsdays/fmsfiles.htm InteliHealth - Fibromyalgia http://www.intelihealth.com/IH/ihtIH?t=8310&c=183181&p=~br,IHW|~st,408|~r, WSIHW000|~b,*|&d=dmtContent Information on Fibromyalgia http://www.futureone.com/~hunter/fms.htm Understanding and Treating Chronic Fatigue and Fibromyalgia - Part 2 http://www.healthy.net/library/articles/chaitow/fibromy/fibro2.htm Chronic Fatigue/Fibromyalgia: The Brain/Sleep Connection http://www.healthy.net/library/articles/chaitow/fibromy/fibro3.htm What Treatment Seems Most Effective in Treatment of Fibromyalgia http://www.healthy.net/library/articles/chaitow/fibromy/fibro4.htm A New Era of Understanding http://members.aol.com/fmsni/conbenn2.htm British Columbia Fibromyalgia Society Library http://www.alternatives.com/bcfms/library.htm Fibromyalgia and Children http://www.geocities.com/HotSprings/Spa/5252/fibroandchildren.html Fibromyalgia in children, pain, sleep, insomnia http://www.shaysnet.com/~wmson/children.htm FOR PARENTS OF SICK AND WORN-OUT CHILDREN (CFS, CFIDS, NMH, ME, FM, etc. http://www.bluecrab.org/health/sickids/sickids.htm Fibromyalgia Webpage and Newsletter http://members.aol.com/fibrocloud/main.htm Fibrom-L Mailing List Info, Fibromyalgia Resources, Books & Websites http://www.FIBROM-L.org/ Sheri's Fibromyalgia & Chronic Fatigue Resources Site http://prairie.lakes.com/~roseleaf/fibro/index.html FibroWorld ~ Stop the Pain!: Fibromyalgia, Myofascial Pain Syndrome, Chronic Pain Information http://members.aol.com/fibroworld/index.htm Fibromyalgia Network http://www.fmnetnews.com/ Living with FMS (Fibromyalgia Syndrome) http://www.tidalweb.com/fms/ Information for Pharmacists: Fibromyalgia, and, Chronic Myofascial Pain http://www.sover.net/~devstar/apothcry.htm Anti-depression Drugs Effective in Treating Fibromyalgia http://www.pslgroup.com/DG951025a.htm Fibromyalgia Medications http://www.alternatives.com/bcfms/letwin.htm Fibromyalgia http://www.pendulum.org/madness/fibromyalgia/index.htm Medications for Fibromyalgia & Myofascial Pain Syndromes http://www.geocities.com/HotSprings/Villa/5998/page3.html Fibromyalgia/Myofascial Pain Syndrome Medications http://www.clark.net/pub/tbear/fms/star-8.htm Fibromyalgia and drugs, medications and pharmaceuticals http://www.sover.net/~devstar/drugs.htm CONTROLLING PAIN IN FIBROMYALGIA SYNDROME http://www.primenet.com/~camilla/fmsdrugs.faq Fibromyalgia Treatment...New Methods Using Available Medicines http://www.medicinenet.com/Art.asp?li=MNI&ag=Y&ArticleKey=582 New Drug Presents Possible FMS Treatment Option http://community-care.oaktree.co.uk/news/fm0005.txt My Regimen http://www.geocities.com/HotSprings/6028/mymeds.htm Survey TOC http://www.geocities.com/HotSprings/6028/survey.htm Fibromyalgia Syndrome - Articles by Devin Starlanyl, M.D. http://www.clark.net/pub/tbear/fms/fms-star.htm Fibromyalgia - Dr. Hendler http://www.frekaiser.org/plh.html Our FM/CFS World Index http://www.abcjb.com/our/index.htm Fibromyalgia Ring http://www.webring.org/cgi-bin/webring?ring=fms;list Fibromeet-Fibromyalgia/Guaifenesin Web Site:-New Videos Now Available http://www.csusm.edu/public/guests/nancym/fibromt.htm ----- USENET newsgroups likely to discuss fibromyalgia and Lyme disease: news:sci.med.diseases.lyme news:alt.med.fibromyalgia news:alt.med.cfs news:alt.support.arthritis news:alt.support.sleep-disorder --------------- 10. Update history for "Lyme disease misdiagnosed as fibromyalgia": 05 May 99 - Added media, "Year-around precautions in order for disease", The State, Columbia, South Carolina, October 13, 1997. 25 Oct 99 - Updated abstracts. --------------- Also see: Lyme Disease Misdiagnosed as fibromyalgia http://www.geocities.com/HotSprings/Oasis/6455/fms-index.html Lyme Disease Misdiagnosed as fibromyalgia - Links Only http://www.geocities.com/HotSprings/Oasis/6455/fms-links.html Lots Of Links On Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html --------------- Prepared by Art Doherty Lompoc, California doherty@utech.net