Lyme Wars - Part 2

Elena Cook, Board member, UK Lyme

 www.uklyme.org.uk

 

27 November 2007

Dr O’Connell claims that the two-tier serological test for Lyme is reliable. In this context, readers may find useful the 14 pages of abstracts from the peer-reviewed literature documenting seronegativity in Lyme Disease at URL http://www.lymeinfo.net/medical/LDSeronegativity.pdf, Contrary to Dr O’Connell’s assertion, seronegative Lyme in both early and late cases is discussed. Although that particular archive only covers the period up till 2003, evidence for seronegative Lyme continues to emerge. (1)

The reasons for the insensitivity of Lyme serology are many and varied and include the abrogation of immune response after early antibiotic treatment; spirochaetal sequestration in immune-privileged sites; antibodies bound up in immune complexes; conversion of borrelia to cell-wall deficient “stealth” forms; lymphocyte tolerisation; antigenic variation in borrelia; and use of tests based on Borrelia burgdorferi sensu lato (Bb sl) strains too dissimilar from the infecting strain (2)(3)(4)(5)(6).

Further, recent studies show that Lyme disease may result from Borrelia species which are not part of the Bb sl group altogether. (7) Borrelia lonestari, for example, is sufficiently distinct from burgdorferi genetically so as to render current Lyme serology and PCR useless in detection – yet it causes a syndrome identical to Lyme.

Dr O’Connell implies that patients with MS, motor neurone disease and other syndromes are routinely being harmed by a misdiagnosis of chronic Lyme disease, but provides no references for her statement. On the other hand, the potential for harm in the reverse case has been amply documented in the peer-reviewed medical literature. So, for example, Lyme disease may be mistakenly labelled multiple sclerosis (8)(9)(10), motor neurone disease/ALS (11)(12) , autism (13) ,juvenile rheumatoid arthritis, SLE, ME/chronic fatigue syndrome, psychiatric illness, fibromyalgia, CNS lymphoma, and so on. Further, in the majority of these conditions, there is evidence to indicate that far from being a misdiagnosis, Lyme may actually be one of the causes of these and other poorly understood syndromes. Thus the UK Health Protection Agency has quietly admitted that Lyme is a trigger of chronic fatigue syndrome and fibromyalgia(14); studies have shown a three-way correlation between MS, Lyme and schizophrenia (15) , and even Alzheimers (16)(17) has now quite literally come under the microscope with studies reporting the presence of the cystic form of Lyme borrelia in autopsied brain tissue.

There can be no excuse for a failure to address the issue of unrecognised Lyme disease when it is acknowledged as the most common vector-borne disease in Europe and North America.. Indeed the modern recognition of Lyme disease as a clinical entity in 1975 only came about when two Connecticut mothers realised that the number of “Juvenile rheumatoid arthritis” cases in their town was out of all proportion to the national average, and that many of the children concerned exhibited all manner of neurological and other symptoms not normally associated with JRA.

Dr O’Connell’s role in the UK places her at the helm of provision of information on Lyme Disease to both the medical profession and the public. It is therefore remarkable that she should take such a one-sided approach., especially given the fact that she herself contributed to a report of a case involving Lyme disease misdiagnosed as spinal astrocytoma.(18)

What, in human terms, does it mean when Lyme Disease is misdiagnosed? In the case of the man thought to have a glioma, it is likely he would have undergone spinal surgery entailing serious risks of permanent motor deficit. In the case of many of the conditions mentioned above, treatment involves the administration of steroids, the immunosuppressant effect of which may have grave consequences in the case of unrecognised Lyme infection .(19) Neuropsychiatric Lyme misdiagnosed as primary psychiatric illness could lead to forced confinement . . Paediatric Lyme misdiagnosed as Munchausen’s by Proxy results in parents being falsely labelled abusers and their children put up for fostering or adoption. (20)

But apart from all the dangers outlined above, there is the question of the risks arising from the untreated Lyme disease itself. The potential sequelae of infection with Lyme and its associated co-infections are protean and well-documented in the literature. They include, but are not limited to, the following: crippling fatigue, pain and disability on par with chronic heart failure (21) , seizure, complete heart block (22), fatal pancarditis (23) , paraplegia (24)(25), tetraplegia (26), stroke- like syndromes (27) , optic neuropathy leading to permanent blindness (28) , deafness (29), cognitive deficits (30), miscarriage, stillbirth, and fetal deformity (31) , learning disability in children (32), and almost the entire range of psychiatric syndromes including dementia and florid psychosis (33), homicide and suicide arising from the latter. (34)

To this physical toll we must add the emotional toll of relationship breakdown, social isolation, loss of job/school and self-esteem and despair at unrelieved suffering, all arising as a direct result of patients being denied diagnosis and treatment of their Lyme disease. . The victims of this disease who once voiced their pain on online Lyme disease boards , their voices now stilled through suicide, bear silent testimony to this shameful fact.

1 Holl-Wieden A, Suerbaum S, Girschick HJ. Rheumatol Int. Seronegative Lyme arthritis.2007 Sep;27(11):1091-1093. Epub 2007 Apr 4

2 Brunner M New method for detection of Borrelia burgdorferi antigen complexed to antibody in seronegative Lyme disease J Immunol Methods, 249(1-2):185-190

3 Aberer E, Koszik F, Silberer M., Why is chronic Lyme borreliosis chronic? Clin Infect Dis 1997 Jul;25 Suppl 1:S64-70.

4 Stricker R, Johnson, L Treatment of Lyme Disease: a Medicolegal Assessment, Expert Review of Anti-Infective Therapy 2004 Aug; Vol 2(4):533 -557

5 Huppertz HI, Horneff G, Neudorf U, Karch H. Acute childhood neuroborreliosis with a selective immune response to a low molecular weight protein expressed by Borrelia garinii. Eur J Pediatr. 1994 Dec;153(12):898-902.

6 Stricker R, Lautin A, Burrascano, J Expert Rev. Anti Infect. Ther. 2005 3(2)

7 Bacon et al, “Glycerophosphodiester phosphodiesterase gene (glpQ) of Borrelia lonestari identified as a target for differentiating Borrelia species associated with hard ticks”, J Clin Microbiol 2004 May;42(5):2326- 8.

8 Kubová Z, Szanyi J, Langrová J, Kremlácek J, Kuba M, Honegr K. Motion-onset and pattern-reversal visual evoked potentials in diagnostics of neuroborreliosis J Clin Neurophysiol. 2006 Oct;23(5):416-20.

9 Drozdowski W, Przegl Epidemiol. [Multifocal central nervous system lesions --multiple sclerosis or neuroborreliosis?] 2006;60 Suppl 1:39-45.

10 Brorson O, Brorson SH, Henriksen TH, Skogen PR, Schoyen R., Association between multiple sclerosis and cystic structures in cerebrospinal fluid. Infection 2001 Dec;29(6):315-9

11 Hänsel Y, Ackerl M, Stanek G. ALS-like sequelae in chronic neuroborreliosis Wien Med Wochenschr. 1995;145(7-8):186-8

12 Halperin JJ, Kaplan GP, Brazinsky S, Tsai TF, Cheng T, Ironside A, Wu P, Delfiner J, Golightly M, Brown RH, et al. Immunologic reactivity against Borrelia burgdorferi in patients with motor neuron disease. Arch Neurol. 1990 May;47(5):586-94

13 Bransfield RC et al., The association between tick-borne infections, Lyme borreliosis and Autism-Spectrum Disorders Med Hypotheses(2007), doi:10.1016/j.mehy.2007.09.006

14 Health Protection Agency www.hpa.org.uk/infections/topics_az/zoonoses/lyme_borreliosis/faq.htm

15 Fritzsche M. Geographical and seasonal correlation of multiple sclerosis to sporadic schizophrenia. Int J Health Geogr. 2002 Dec 20;1(1):5.

16 Miklossy J, Kis A, Radenovic A, Miller L, Forro L, Martins R, Reiss K, Darbinian N, Darekar P, Mihaly L, Khalili K. Beta-amyloid deposition and Alzheimer's type changes induced by Borrelia spirochetes Neurobiol Aging. 2006 Feb;27(2):228-36

17 MacDonald AB. Alzheimer's disease Braak Stage progressions: reexamined and redefined as Borrelia infection transmission through neural circuits. Med H 2007;68(5):1059-64. Epub 2006 Nov 17

18 Dryden MS, O'Connell S, Samuel W, Iannotti F. Lyme myelitis mimicking neurological malignancy. Lancet. 1996 Aug 31;348(9027):624.

19 Pachner AR, Amemiya K, Bartlett M, Schaefer H, Reddy K, Zhang WF. Lyme borreliosis in rhesus macaques: effects of corticosteroids on spirochetal load and isotype switching of anti-borrelia burgdorferi antibody. Clin Diagn Lab Immunol. 2001 Mar;8(2):225-32.

20 Sherr VT Med Hypotheses. 2005;65(3):440-7. Munchausen's syndrome by proxy and Lyme disease: medical misogyny or diagnostic mystery?

21 Cameron DJ Generalizability in Two Clinical Trials of Lyme Disease, Epidemiologic Perspectives and Innovations, 2006 3:12

22 Verbunt RJ, Visser RF. [Total atrioventricular block following a tick bite] Ned Tijdschr Geneeskd. 2007 Sep 1;151(35):1941-4

23 Marcus LC, Steere AC, Duray PH, Anderson AE, Mahoney EB. Ann Intern Med. 1985 Sep;103(3):374-6. Fatal pancarditis in a patient with coexistent Lyme disease and babesiosis. Demonstration of spirochetes in the myocardium.

24 Salonen R, Rinne JO, Halonen P, Puusa A, Marttila R, Viljanen MK., Lyme borreliosis associated with complete flaccid paraplegia. J Infect. 1994 Mar;28(2):181-4.

25 Oleson CV, Sivalingam JJ, O'Neill BJ, Staas WE Jr Transverse myelitis secondary to coexistent Lyme disease and babesiosis.. J Spinal Cord Med. 2003 Summer;26(2):168-71.

26 Merlo A, Weder B, Ketz E, Matter L. Locked-in state in Borrelia burgdorferi meningitis. J Neurol. 1989 Jul;236(5):305-6.

27 Scheid R, Hund-Georgiadis M, von Cramon DY. Intracerebral haemorrhage as a manifestation of Lyme neuroborreliosis? Eur J Neurol. 2003 Jan;10(1):99-101.

28 Rothermel H, Hedges TR 3rd, Steere AC. Optic neuropathy in children with Lyme disease Pediatrics..2001 Aug;108(2):477-81.

29 Peltomaa M, Pyykkö I, Sappälä I, Viitanen L, Viljanen M. Lyme borreliosis, an etiological factor in sensorineural hearing loss? Eur Arch Otorhinolaryngol. 2000;257(6):317-22.

30 International Lyme and Associated Diseases Society Evidence-based Guidelines for the Management of Lyme Disease, Expert Rev Anti-infect Ther. 2 (1) 2004

31 Carlomagno G, Luksa V, Candussi G, Rizzi GM, Trevisan G. Lyme Borrelia positive serology associated with spontaneous abortion in an endemic Italian area. Acta Eur Fertil. 1988 Sep-Oct;19(5):279-81

32 Lyme Borreliosis in Neurology and Psychiatry, Ed. VT Sherr MD, D Cameron MD online publication of Lyme Disease Action 2006

33 Fallon BA, Nields, JA, Lyme Disease: A Neuropsychiatric Illness, Am J Psychiatry 151:11 Nov 1994 p1571-1580

34 Statement by family of suicide victim and Lyme patient Prof Alasdair Crockett published at http://www.lymediseaseaction.org.uk/releases/lda_21.htm

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