Why The Controversy Over Diagnosing and Treating Lyme Disease

By Tom Grier

(As published in the Daily Reader newspaper, Ashland, Wisconsin)

While most people are aware that Lyme disease is the most prevalent tick-borne illness in America (1,2), few people realize that, since the discovery of the bacteria that causes Lyme disease, a controversy has raged within the medical community as to what constitutes proper diagnosis and treatment of the disease.(3-18)

In 1982, when the cause of Lyme disease was known to be a bacteria, early medical papers reported that, as in other bacterial infections, two weeks of antibiotics should be adequate.(50-54) Dozens of medical papers since 1982 have documented antibiotic failures in the treatment of Lyme disease. (19-34, 55-71) "Unfortunately", said Barb Jones, R.N., of the Minnesota Department of Health's Provider Education Work Group on Lyme Disease, "It appears that Lyme disease may be similar to two other spirochetal diseases - syphilis and relapsing fever, which also tend to be relapsing in nature." (78-87)

Jones adds, "In every antibiotic treatment study since1982 that followed Lyme patients post treatment for at least three months, there have been reports of relapses occurring. In one population study on Nantucket Island, Lyme patients that have received antibiotic treatment have been followed for over five years. The data from this study has confirmed that the longer the patient is followed post treatment, the higher the frequency of relapse. Overall, more than one-fourth of all the treated patients experienced a relapse of symptoms and required additional treatment. (55)

The controversy that exists within the medical community about Lyme disease is over what constitutes a proper diagnosis of Lyme disease and if the infection persist even after treatment. Lois Anderson of Virginia, Minnesota, explains, "After I was treated in the hospital for Lyme disease with intraveneous Rocephin, I was told by my neurologist that, despite lingering symptoms, there was no possibility I could still have Lyme disease. Three months later, all of my symptoms had returned. then I was told I needed to see a psychiatrist! Anderson continues, "After I was treated that first time for Lyme disease, it was extremely difficult to ge a doctor interested in my recurring symptoms. You know, insurance companies rarely complain about reimbursing your first treatment, but just dare to have a relapse and see how you're treated!"

Armed with dozens of reprints from medical journals, Sandy Karppinen of the Cloquet (Minnesota) Lyme Disease Support group explained, "It isn't uncommon for Lyme patients whose symptoms don't resolve quickly to be referred to a psychiatrist. Insupport group, we frequently encounter patients who are sent to psychiatrists." (90-93). Doctors who refuse to treat you with antibiotics beyond a few weeks argue that you don't have a persistent or active infection, but rather that you have some unknown lingering immune dysfunction. That argument is pretty weak when you see the patients improve when they are on antibiotics and worsen when therapy is withdrawn."

Karppinen adds, "In support of those who maintain that lingering Lyme disease symptoms are caused by a lingering infection are a handful of patient case histories where the bacteria that causes Lyme disease have been cultured from patients who have received what should have been adequate levels of antibiotics to clear the infection. In some cases where the attempt is made, patients have been culture positive after months - and sometimes even years - of treatment. (22,24,25,29, 30-32). She concludes, "Doctors stopped listening to Lyme patients complaints years ago. Unfortanately, most have also chosen to ignore the published evidence for persistent infection!" (19-34)

Mary Halston of the Cloquet Lyme support group says of her psychiatrist experience, "On my second visit, my psychiatrist told me my real problem was that my doctors didn't know what m real problem was. And, he was right! It wasn't until I went on antibiotics that I realized just how sick I had allowed myself to become." She continues, "I wasn't crazy! I had an infection of the brain." (88-95) Halston asks, "My health improved dramatically on antibiotics, but what if I hadn't sought out a second opinion? Where do you go when the infectious disease specialist.....the local "expert", tells you that you don't have the disease? If I hadn't read a paper during that time by psychiatrist Brian Fallon, M.D., who has researched LYme disease, I would have gone crazy!" (87)

One case history that supports this scenario was presented at the LDF 1993 Lyme Conference. Dr. Christina Waniek and her colleqgues at the New York Psychiatric Institute had a patient referral that ended tragically. A 47-year-old patient had a positive Lyme test and was treated with antibiotcs for four weeks, but six months later ha had a relapse in symptoms. Since this patint's second Lyme test was negative, no further antibiotics were given and the patient continued to deteriorate until the patient's subsequent death. The neuropathological diagnosis of Lyme disease contributing to the patient's demembtia was based on the presence of the Lyme bacteria that was found at autopsy within the patient's brain. (31)

The idea that a patient could have an infection and not test positive sounds improbable, but, according to Dr. Richard Tilton, Ph.D., laboratory director of Boston Biomedica Labs (a reference laboratory that tests for Lyme disease), "Regardless of where the infection is in the body, we routinely see up to 25 % of Lyme patients test negative in late stage disease, and antibody levels can also diminish significantly after antibiotic treatment". The two tests that are relied upon by most doctors for the diagnosis of this disease cannot detect the actual organism, but instead they detect the body's production of antibodies. (35-46) Tilton explains, "Not all patients exhibit the same degree of antibody production. Some Lyme antibodies are undetectable because they can form antibody complexes that cannot be detected by the standard antibody tests." (47-49)

An example of one such case was published in the Journal of European Neurology in 1995: A previously healthe 58-year-old woman developed symptoms consistent with neurological Lyme disease, but continued to test negative with all standard Lyme blood tests. Over a period of five years, the patient received several short courses of intravenous antibiotics, and twenty-two months of oral antibiotics. The patient improved with each treatment, but continued to relapse between therapies. Using a more direct test, known as antigen detection test, and another test that detects antibody complexes, the researchers detected particles of the bacteria in the patient's cerebral spinal fluid (CFS(. Previosly stored CSF from this patient also tested positive for the presence of the Lyme bacteria, indicating that, despite aggressive antibiotic therapy, this patient still had an active, persistent infection of the central nervous system. (32)

According to Sharon Smith, president of the national patient advocacy group, Lyme Alliance, Inc., "Most media stories focus on prevention and symptoms, but the story that few people ever hear about is the controversy concerning the medical community's general lack of accepting the concept that active Lyme disease can persist even after treatment." Smith concludes, "The real problem for Lyme patients isn't getting diagnosed or treated the first time. It's where do you go when the symptoms return and doctors refuse to continue treatment. Most people have no idea about the politics and controversies of Lyme disease until a family member has experienced a relapse. When the disease hits them the second time and they're left without access to therapy, that's when most patients seek out information on their own and find out that Lyme disease is alot more than they bargained for."

About the author: Tom Grier has a BS degree in chemistry and biology from the University of Minnesota and a two-year post graduate background in microbiology and immunology. Since 1982, he worked in the pharmaceutical industry until he contracted Lyme encephalitis. Since 1991, he has authored two books on Lyme disease and over one hundred articles on the disease for journals , magazines, and newsletters. His third book , "The 21st Century Lyme Disease Survival Manual", will be available in Spring, 2000. It will contains over 1200 medical references.

References:

Incidence and cause(1,2)

  1. 1998 CDC Surveillance Data, "Emerging Infectious Diseases in America."
  2. Burgdorfer W. "First Decade of Lyme Borreliosis". Infection, July/August 1991;19(4)

The controversy over Lyme disease diagnosis and treatment.(3-18)

  1. Liegner KB. "Lyme Disease: The Sensible Pursuit of Answers". Commentary, J. Clin Microbiol 1993;31:1961-1963
  2. Liegner KB. "Lyme Disease: A Persistent Problem". Guest editorial, JAMA 31(8):1961-63
  3. Liegner Kenneth B, M.D. "Chronic Persistent Infection and Chronic Persistent Denial of Chronic Persistent Infection in Lyme Disease". A position paper presented at the 6th Annual International Conference on Lyme Disease and other Tick-borne Illnesses, Atlantic City, NJ, May 5-6, 1993
  4. Liegner Kenneth B. "Chronic Lyme disease: A Costly Dilemma". Abstract # P012M, Fifth International Lyme Borreliosis Research Symposia, Arlington, VA, 1992 *
  5. American College of Physicians Video Guide to the Diagnosis and Treatment of Lyme Disease. ACP VHS Available through the ACP Lyme Seminar program.
  6. Hahlberg P, Granlund H, Nyman D, Panelius J, Sappälä I. "Treatment of Late Lyme Borreliosis". Infection 1994;29:255-261
  7. Asch S, Bujak DI, Weiss M. "Lyme Disease: An Infectious and Post Infectious Syndrome". J Rheumatol 1994;21:454-61
  8. Sigal Leonard H. Editorial, "Lyme Disease: Primum Non Nocere". J Infect Dis 1995;171:423-424 Address responses to: Leonard H. Sigal, MD, 1 Robert Wood Johnson Place, MEB 484, New Brunswick, NJ 08903-0019
  9. Sigal LH. "Lyme Disease: Don't Let Disguises Fool You". Intern Med, June 1992;13:24-3
  10. Sigal LH. "Summary of the First 100 Patients Seen at a Lyme Disease Referral Center". American J Med 1990;88:577-581
  11. Sigal LH, Schutze S. "Possible Autoimmune Mechanisms in Lyme Disease. Molecular and Immunologic Approaches to Lyme Disease". Cold Spring Harbor Press, Plainview, NY
  12. Sigal Leonard H, M.D. "The Lyme Disease Controversy". Arch Internal Med, July 26, 1996; 156:1493-1500
  13. Steere AC. "Seronegative Lyme Disease". JAMA 1993;270(11):1369
  14. Steere AC. "Distinguishing Lyme Disease from Its Look-A-Likes". Emergency Medicine, August 1992;15:28-44
  15. Steere AC. "Lyme Disease". New England J Med 1989;321:586-596.
  16. Steere AC, Taylor E, McHugh GL, Logigian EL. "The Overdiagnosis of Lyme Disease". JAMA, April 14, 1993;269(14):1812-1816

Persistence of Infection Post Antibiotic Therapy (19-34)

  1. Dattwyler RJ, Halperin JJ. "Failure of Tetracycline Therapy in Early Lyme Disease." Arthritis Rheum 1987;30:448-452
  2. Pal GS, Baker JT, Wright DJM. "Penicillin Resistant Borrelia Encephalitis Responding to Cefotaxime". Lancet I (1988) 50-51
  3. Liegner KB, Shapiro JR, Ramsey D, Halperin AJ, Hogrefe W, Kong L. "Recurrent Erythema Migrans Despite Extended Antibiotic Treatment with Minocycline in a Patient with Persisting Borrelia Burgdorferi Infection". J. American Acad Dermatol 1993;28:312-314
  4. Masters EJ, Lynxwiler P, Rawlings J. "Spirochetemia After Continuous High Dose Oral Amoxicillin Therapy". Infect Dis Clin Practice 1994;3:207-208
  5. Cameron Daniel. "The Efficacy of Three Antibiotics in Elderly Lyme Borreliosis Patients: Forty patients over the age of 70 are followed for 13 months". Abstract, 1993 LDF VI Annual Conference On Lyme Borreliosis, Atlantic City, NJ 1993 *
  6. Cleveland CP, Dennler PS, Durray PH. "Recurrence of Lyme Disease Presenting as a Chest Wall Mass: Borrelia burgdorferi was present despite five months of IV ceftriaxone 2g, and three months of oral cefixime 400 mg BID. Poster presentation LDF International Conference on Lyme Disease research, Stamford, CT, April 1992 *
  7. Haupl T, Hahn G, Rittig M, Krause A, Schoerner C, Schonnherr U, Kalden JR, Burmester GR. "Persistence of Borrelia Burgdorferi in Ligamentous Tissue From a Patient With Chronic Lyme Borreliosis". Arthritis and Rheum 1993;36:1621-1626
  8. Kezler K, Tilton RC. "Persistent PCR Positivity in a Patient Being Treated for Lyme Disease". J. of Spirochetal and Tick-Borne Diseases 1995;2(3):57-58
  9. Lavoie Paul E. "Failure of Published Antibiotic Regimens in Lyme Borreliosis: Observations on prolonged oral therapy". Abstract presented at the 1990 Lyme Borreliosis International Conference in Sweden.*
  10. Lavoie Paul E. "Failure of Published Antibiotic Regimens in Lyme Borreliosis: Observations on prolonged oral therapy". Abstract presented at the 1990 Lyme Borreliosis International Conference in Sweden.*
  11. Preac-MursicV, Wilske B, Schierz G, et al. Repeated Isolation of Spirochetes From the Cerebrospinal Fluid of a Patient With Meningoradiculitis Bannwarth' Syndrome". Eur J Clin Microbiol 1984;3:564-565
  12. Preac-Mursic V, Weber K, Pfister HW, Wilske B, Gross B, Baumann A, Prokop J. "Survival of Borrelia Burgdorferi in Antibiotically Treated Patients with Lyme Borreliosis". Infection 1989;17:335-339
  13. Waniek C, M.D. et al. "Rapid Progressive Frontal Type Dementia and Subcortical Degeneration Associated with Lyme Disease". Abstract, VII Annual Lyme Disease Foundation International Conference on Lyme Disease 1993. Christina Waniek M.D, Isak Provnik PhD, Mavis A Kaufman MD Dept of Brain Imaging and Neuropathology, New York Psychiatric Institute, NY
  14. Lawrence C, Lipton RB, Lowy FD,Coyle PK. "Seronegative Chronic Relapsing Neuroborreliosis". European Neurology. 1995;35(2):113-117
  15. Shadick Nancy A MD MPH; Phillips CB et al. "The Long Term Follow Up of Lyme Disease Patients Within a Fixed Population on the Island of Nantucket". Abstract, presented at the 1997 LDF International Conference and Lyme Symposia in Boston, MA.
  16. Kostis G, Peacocke M, Klempner MS. "Fibroblasts Protect the Lyme Disease Spirochete, Borrelia Burgdorferi, From Ceftriaxone In Vitro. J Infect Dis 1992;166:440-444

Laboratory References (35-46)

    **I.L.A.D.S. "Consortium of Physicians and Lab Professionals Questioning the CDC's

    Adoption of Certain Lyme Disease Diagnostic and Testing Criteria. Position Paper". Harris, Nick. 1999

  1. Bakken LL,Callister SM, Wand PJ, Schell RF. "Interlaboratory Comparison of Test Results for the Detection of Lyme Disease by 516 Participants in the Wisconsin State Lab of Hygiene/College of American Pathologists Proficiency Testing Program". J Clin Microbiol 1997; Vol 35, No 3:537-543
  2. Bakken LL, Case KL, Callister SM et al. "Performance of 45 Laboratories Participating in a Proficiency Testing Program for Lyme Disease Serology". JAMA 1992;268:891-895
  3. Barbour AG. Laboratory Aspects of Lyme Borreliosis. Clin Microbiol Rev 1988;1:399-414
  4. Dattwyler RJ, Volkman DJ et al. "Seronegative Lyme Disease". New Eng J of Med 1988;319:1441-1446
  5. Harris, Nick S. "An Understanding of Laboratory Testing for Lyme Disease". J. of Spirochetal and Tick-Borne Diseases Vol 5, Spring / Summer 1998.
  6. Lane RS, Lennette ET, Madigan JE. "Interlaboratory and Intralaboratory Comparisons of Indirect Immunofluorescence Assays for Serodiagnosis of Lyme Disease". J Clin Microbiol 1990;28(8):1774-1779
  7. Magnarelli LA. "Quality of Lyme Disease Tests". JAMA 1989;262:3464-3465
  8. Manak MM, Gonzalez-Villasenor LI, Crush-Stanton S, Tilton, RC. "Use of PCR Assays to Monitor Clearance of Borrelia Burgdorferi DNA from the Blood Following Antibiotic Therapy". Journal of Spirochetal and Tick-Borne Diseases Vol 4, No. ½, Spring/Summer 1997
  9. Engstrom SM, Sshoop E, Johnson RC. "Immunoblot Interpretation Criteria for the Serodiagnosis of Early Lyme Disease". J of Clin Micro, 1995 Minnesota Dept of Health Diagnosis Committee Handout.
  10. Tilton, Richard C. "Interpetaion of Western Blots for the Detection of Antibodies to B. burgdorferi". Boston Biomedica Clinical Labs Technical Bulletin # 102. 1-800-866-6254
  11. Tilton, Richard C. "Laboratory Diagnosis of Lyme Disease and Other Tick-borne Diseases". Boston Biomedica Technical Bulletin # 137 Info call: 1-800-866-6254
  12. Tilton Richard C, Sand Mary N , Manak M. "The Western Blot for Lyme Disease: Determination of Sensitivity, Specificity, and Interpretive Criteria with Use of Commercially Available Performance Panels". Clinical Infection of Diseases, 1997:25(Suppl 1):S31-S34

Antibody/antigen complexes (47-49)

  1. Coyle PK. "Borrelia Burgdorferi Specific Antigen-antibody Complexes in the CSF of 78 % of Seronegative Lyme Patients with Early EM Rashes". Fifth International Conference on Lyme Borreliosis, Arlington, VA, June 1992 and LDF Conference Atlantic City 1993.*
  2. Coyle PK, Schutzer SE, Belman AL, Krupp LB, Golightly MG. "Cerebrospinal Fluid Immune Complexes in Patients Exposed to Borrelia Burgdorferi: Detection of Borrelia-specific and Non-specific Complexes. Annal of Neurology, 1990;28:6:739-744
  3. Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J, Krupp LB, Luft B. "Detection of Borrelia burgdorferi antigens in the cerebrospinal fluid." Neurology 1993;43:1093-1097 Mavis A. Kaufman M.D. Dept of Brain Imaging and Neuropathology New York Psychiatric Institute, NY

Treatment (50-71)

  1. Wormser Gary P, et al. "Treatment of Borrelia Burgdorferi Infection. Laboratory Medicine, May 1990;21:316-21
  2. Johnson RC, Kodner C, Russel M. "In Vitro and In Vivo Susceptibility of the Lyme Disease Spirochete, Borrelia Burgdorferi, to Four Antimicrobial Agents". Antimicrobial Agents and Chemotherapy 1987;31:164-67
  3. Johnson SE, Klein GC, Schmidt GP. "Susceptibility of the Lyme Disease Spirochete to Seven Antimicrobial Agents". Yale J Biol Med 1984;57:99-103
  4. Steere AC, Hutchinson GL, Rahn DW et al. "Treatment of Early Lyme Disease". Ann Intern Med 1983:99:22-26
  5. Steere AC, Levin RE, Molloy PJ, Kalish RA, et al. "Treatment of Lyme Arthritis". Arthritis and Rheumatism, June 1994;37(6):878-888
  6. Nancy A. Shadick, MD, MPH Associate Rheumatologist, Brigham and Women's Hospital

    "The Long-term Follow-up of LD: A Population-based Retrospective Cohort Study". N.A. Shadick, C.B. Phillips, O. Sangha, A.H. Fossel, K. Fossel, E.A. Wright, R.A. Lew, M.H. Liang. Robert B. Brigham Multipurpose Arthritis and Musculoskeletal DiseasesCenter, Brigham and Women's Hospital Objectives: To document the frequency of and to identify risk factors for long term sequelae from acute Lyme disease. Design: Population-based retrospective cohort study. Participants: Subjects with prior Lyme disease were compared with randomly selected population controls. Setting: An island in the northeast endemic for Lyme disease. Main Outcome Measures: A standardized physical examination, functionalstatus assessment (SF36), neurocognitive test battery and serological analysis. Results: In univariate analyses, the Lyme group (n=176) (mean duration from infection to evaluation, 5.2 years) had a higher prevalence of arthralgias (p<0.0001), fatigue (P<0.004), memory (p<0.004) and word finding difficulties (p<0.003) than controls(n=160). They had more knee swelling on physical exam (p<0.03) poorer functional status(p<0.004) and on neurocognitive testing, theLyme group had lower attention scores than controls. Seventy-three (73) individuals complained of persistent symptoms followingLymedisease and weremore likely tohave had neurologic symptoms or manifestationsduring their acuteillness (p<0.01) and a longer duration of infection (p<0.02) thanthose who had completelyrecovered. Forty-seven (47) individuals reported relapses after initial treatment, and were more likely to have had erythromycin, penicillin or tetracycline than amoxicillin or doxycycline as initial oral therapy (p<0.007). Conclusions: Risk factors for persisting symptoms after Lyme disease include neurologic dissemination and a longer duration of infection."

  7. Kezler K, and Tilton RC. Persistent PCR "Positivity in a Patient Being Treated for Lyme Disease. J. of Spirochetal and Tick-Borne Diseases 1995;2(3):57-58
  8. *Klempner MS, Noring R, Rogers RA. "Invasion of Human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia Burgdorferi". J Infect Dis 1993;167:1074-81
  9. Kostis G, Peacocke M, Klempner MS. "Fibroblasts Protect the Lyme Disease Spirochete, Borrelia Burgdorferi, from Ceftriaxone In Vitro". J Infect Dis 1992;166:440-444
  10. *Liegner KB. "Lyme Disease: A Persistent Problem". Guest editorial JAMA 31(8):1961-63
  11. *Liegner KB. "Lyme Disease: The Sensible Pursuit of Answers". Commentary, J. Clin Microbiol 1993;31:1961-1963
  12. Liegner KB. "Spectrum of Antibiotic-responsive Meningoencephalmyelitides: A fatal case of CMEM". Poster presentation 1992 LDF Lyme Conference, Stamford, CT April 1992 *
  13. Liegner Kenneth B MD. "Chronic Persistent Infection and Chronic Persistent Denial of Chronic Persistent Infection in Lyme Disease". Position paper presented at the 6th Annual International Conference on Lyme Disease and other Tick-borne Illnesses, Atlantic City, NJ, May 5-6, 1993 *
  14. Liegner, Kenneth B. "Chronic Lyme Disease: A Costly Dilemma". Abstract # P012M, Fifth International Lyme Borreliosis Research Symposia, Arlington, VA 1992 *
  15. Liegner KB, Shapiro JR, Ramsey D, Halperin AJ, Hogrefe W, and Kong L. "Recurrent Erythema Migrans Despite Extended Antibiotic Treatment with Minocycline in a Patient with Persisting Borrelia Burgdorferi Infection". J. American Acad Dermatol 1993;28:312-314
  16. Luft BJ, Steinman CR, Neimark HC, Muralidhar B, Rush T, Finkel MF, Kunkel M, and Dattwyler RJ. "Invasion of the CNS by Bb in Acute Disseminated Infection". JAMA 1992;267:1364-1367
  17. *Ma Y, Sturrock A, and Weis JJ. "Intracellular Localization of Borrelia Burgdorferi Within Human Endothelial Cells". Infect Immun 1991;59:671-678
  18. Schmidli J, Hunzicker T, Moesli P, et al. "Cultivation of Bb From Joint Fluid Three Months after Treatment of Facial Palsy Due to Lyme Borreliosis". J Infect Dis 1988;158:905-906
  19. Sigal LH, Schutzer S. "Possible Autoimmune Mechanisms in Lyme Disease: Molecular and Immunologic Approaches to Lyme Disease". Cold Spring Harbor Press, Plainview, NY
  20. Sigal LH. "Persisting Complaints Attributed to Chronic Lyme Disease: Possible mechanisms and implications for management". American J Med April 1994;96:365-374
  21. Stanek G, Klein J, Bittner R, Glogar D. "Isolation of Borrelia Burgdorferi from the Myocardium of a Patient with Long-standing Cardiomyopathy". New Engl J Med 1990;322:249-252
  22. Wokke JHJ, vanGijn J, Eldersom A, Stanek G. "Chronic Forms of Borrelia Burgdorferi Infection of the Central Nervous System". Neurology 1987;37:1031-1034

Abbreviated conference abstracts 72-77 from the:1996 San Francisco International LD Research Symposia

  1. Abstract: # D644 - P.K. Coyle. "Rapid Dissemination of Bb From the Skin to the CNS.

    Conclusion: Bb can rapidly seed the CNS from the entry site in the skin, even prior to the formation of a rash. Therefore the traditional staging of Lyme disease based on symptoms, as either early or late stage may be a poor indicator of actual dissemination of the spirochete.

  2. Abstract #D646 - P.K. Coyle, et al. "Multiple Sclerosis vs. Lyme Disease: A Diagnostic Dilemma".
  3. Forty-seven patients were identified as possible MS patients. Many had brain lesions on their MRIs, consistent with MS 61%. CSF was consistant with MS in 46 % of the patients. The final breakdown of the 47 patients was: 21 MS, 15 LD, 7 had findings constant with both LD and MS. Thirteen patients responded to antibiotics but only those who had CSF findings consistent with LD.
  4. Abstract #627 - K. Liegner, P. Durray. "A Four Case Study of Chronic Meningoencephalomyelitides".

    Serious neurological complications can occur in

  5. neurological Lyme despite antibiotic treatment.

  6. Abstract # 625 Kenneth Liegner, Paul Durray. "Unusual Micro-packet Structures Isolated from the Brain of a Patient that Died from Advanced Neurologic Lyme Disease. A Fatal Case of Chronic Meningoencephalomyelits".

    A post-mortum exam including a brain biopsy and Transmission Electron Microscopy revealed as of yet, unknown cytoplasmic membrane structures adjacent in the brain cappilary's endothelium.

  7. Abstract # D607 - M.J.G. Appel. "The Persistence of Bb in Dogs After Antibiotic Treatment".

    Seventeen Beagle puppies were infected with Bb from infected ticks, eleven were treated for four weeks with either Doxycycline or amoxicillin in doses according to weight. Six were control dogs. 1/11 had Bb isolated from skin, but 7/11 dogs had Bb isolated from other tissues during post-mortum. All of the persistent infected pups had persistent arthritis.

    Conclusion: Skin biopsies are not predictive of persistence of infection. Also the standard excepted four week course of antibiotic treatment in dogs is not sufficient.

  8. Abstract # D623 - G. Antic. "Lyme Borreliosis Carditis: A Five YearExperience in Intensive Coronary Care Unit".

    Seventeen patients were admitted as CCU urgent cases. 58 % had syncope, 41 % dzziness, 70 % had a 3rd degree A-V Block, 29 % had a 2nd degree A-V Block, 3/17 had Pancarditis, 4/17 required pacemakers.

    Conclusion: LD can lead to serious and sudden cardiac complications.

References pertaining to relapsing Syphilis and Tick-Borne Relapsing Fevers (78-87)

  1. Berry CD, Hooton TM, Collier AC et al. "Neurologic Relapse After Benzathine Penicillin Therapy for Secondary Syphilis in a Patient with HIV Infection". New Engl J Med 1987;316:1587-1589
  2. Lukehart SA, Hook EW, Baker-Zander SA et al. "Invasion of the Central Nervous System by Treponema Pallidum: Implications for diagnosis and treatment". Annals Internal Med 1988;109:855-862
  3. Malone JL, Wallace M, et al. "Syphilis and Neurosyphilis in a Human Immunodeficiency Virus Type-1 Seropositive Population: Evidence for frequent serologic relapse after therapy. Amer J Med 1995;99:55-63
  4. Musher, Daniel M. "Syphilis, Neurosyphilis, and AIDS". J Infect Dis 1991;163:1201-1206
  5. Musher DM, Hamill RJ, Hamill RJ, Baughn RE. "Effect of Human Immunodeficiency Virus (HIV) Infection on the Course of Syphilis and on the Response to Treatment". Annals of Internal Med 1990;113:872-881
  6. Nell EE. "Comparative Sensitivity of treponemes of Syphilis, Yaws, and Bejal to Penicilin In Vitro, with Observations on Factors Affecting its Treponemicidal Action. Am J Syphilis. 1956;38:92-106
  7. Schinedling MM, Natole J. "Neuropsychiatric Lyme Borreliosis and Syphilis: Is there a parallel?" St. Mary's Medical Center, Saginaw, MI Lecture handout.
  8. Winters HA, Notar FV, Bromberg K et al. "Gastric Syphilis: Five recent cases and a review of the literature". Ann Intern Med 1992;116:314-319
  9. Felsenfeld Oscar MS M.D. "Borrelia Strains, Vectors, Human and Animal Diseases". 1971 Warren Green Inc., 10 South Brentwood Blvd, St. Louis MO 63105. Library of Congress # 72-127355
  10. Fallon, Brian A., Nields JA, Burrascano JJ et al. "The Neuropsychiatric Manifestations of Lyme Borreliosis". Psychiatric Quarterly 1992;63(1):41-63 Neurological and Psychiatric

Complications of Neuro-Lyme Disease (88-95)

  1. Abstract: # D644 - P.K. Coyle. "Rapid Dissemination of Bb from the Skin to the CNS".

    Conclusion: Bb can rapidly seed the CNS from the entry site in the skin, even prior to the formation of a rash. Therefore the traditional staging of Lyme disease based on symptoms, as either early or late stage may be a poor indicator of actual dissemination of the spirochete.

  2. Abstract #D646 - P.K. Coyle, et al. "Multiple Sclerosis vs. Lyme Disease: A Diagnostic Dilemma".
  3. Forty-seven patients were identified as possible MS patients. Many had brain lesions on their MRIs, consistent with MS 61%. CSF was consistant with MS in 46 % of the patients. The final breakdown of the 47 patients was: 21 MS, 15 LD, 7 had findings constant with both LD and MS.Thirteen patients responded to antibiotics but only those who had CSF findings consistent with LD.
  4. Abstract #627 - K. Liegner, P. Durray. "A Four Case Study of Chronic Meningoencephalomyelitides".

    Serious neurological complications can occur in neurological Lyme despite antibiotic treatment.

  5. Abstract # 625 - Kenneth Liegner, Paul Durray,. "Unusual Micro-packet Structures Isolated from the Brain of a Patient that Died from Advanced Neurologic Lyme Disease. A Fatal Case of Chronic Meningoencephalomyelits".

    A post-mortum exam including a brain biopsy and Transmission Electron Microscopy revealed as of yet, unknown cytoplasmic membrane structures adjacent in the brain cappilary's endothelium.

  6. Schinedling MM, Natole J. "Neuropsychiatric Lyme Borreliosis and Syphilis: Is there a parallel?" St. Mary's Medical Center, Saginaw, MI Lecture handout.
  7. Fallon, Brian A., Nields JA, Burrascano JJ et al. "The Neuropsychiatric Manifestations of Lyme Borreliosis". Psychiatric Quarterly 1992;63(1):41-63
  8. Luft BJ, Steinman CR, Neimark HC, Muralidhar B, Rush T, Finkel MF, Kunkel M, and Dattwyler RJ. "Invasion of the CNS by Bb in Acute Disseminated Infection". JAMA 1992;267:1364-1367
  9. Wokke JHJ, vanGijn J, Eldersom A, Stanek G. "Chronic Forms of Borrelia Burgdorferi Infection of the Central Nervous System". Neurology 1987;37:1031-103

    *These references were cited by interviewed patients, but not used in the body of the final edit of the story.