Lyme wars
BMJ 2007; 335 doi: https://doi.org/10.1136/bmj.39363.530961.AD (Published 01 November 2007) Cite this as: BMJ 2007;335:910All rapid responses
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After suffering at least 7 years of this debilitating illness
wreaking havoc on my physical and mental health and my family’s well-
being, I was finally diagnosed as having Chronic Lyme disease in April
2007 clinically and by blood specimen by a Professor who has successfully
treated a number of other Lyme patients.
I have been offered bespoke treatment for Chronic Lyme Disease and my
additional abnormalities elsewhere in the UK by a private provider at
cost. I approached my local Primary Care Trust (PCT) for funding with the
full backing of my GP.
My physical and neurological problems are degenerating which have
left me unable to work but I always retained hope that those who could,
would. I feel now that I have no hope anymore. Today I received two
letters.
The first was from the PCT refusing my own and my diagnosing
consultant’s application for out of area treatment funding citing this BMJ
report as the reason. It has taken an exact year for me to receive the
final answer! Appalling in itself.
The second letter was from my employer where I used to act as a
Senior Manager covering roughly 8,000 staff looking at new ways of working
and cost improvement strategies with the view of reducing a £multi-million
deficit . The letter was to invite me to discuss my employer’s
frustration that I can’t return to work within any given timescale due to
lack of treatment by the NHS. My employer is instead having to suffer the
direct, indirect and opportunity costs of me not being able to contribute
in my normal capacity. Guess who is my employer? Correct, the NHS!
Farcical!
I feel in a state of abandonment by the NHS and overall medical
profession. Any
empathetic patient focus by the powers that be seems to have been totally
lost.
I have no competing interests – just someone who has had the absolute
misfortune to have been bitten by a tick – diagnosed with having Chronic
Lyme disease and then being refused any treatment whatsoever.
If these ‘medical professionals’ believe they have my best interests
in mind by abandoning me to sink with my ever deteriorating condition
under the auspices of protecting me by ‘doing no harm’, then they are, in
my opinion, completely deluded as to the meaning of their vocation. To do
nothing is the greatest shame.
Where do I go from here?
Competing interests:
None declared
Competing interests: No competing interests
Until 4 years ago, I was a very fit and active individual.
I ran my own successful Company and lived in a large 7 bedroom House.
I am now unemployed (not by choice) and suffer daily from chronic fatigue
and
paraesthesias in my hands and feet, and neuralgia at night on the side of
my
face.
I have had in the last 4 years, 2 sets of blood tests under the NHS to
determine
my illness,both of which have come back negative from my GPs.
They have both proudly explained that there is nothing wrong with me and
treat
me as if I am suffering from some sort of delusional depressive illness.
Why is this disease so difficult to diagnose? and why is it such a hot
potato
amongst the medical profession?
Surely all you medical experts realize that individuals like myself simple
fall
between the cracks of the conventional medical diagnostic system and are
left to
flounder with an increasingly debilitating illness.
As I cannot work with my illness, then I cannot generate the £50K Plus of
corporation tax I was previously paying into the "system" every year.
Does this count for anything?
Isn't it time for the medical profession to stop speculating about this
illness and
for someone within the NHS to set up a funded body to fully investigate?
Competing interests:
None declared
Competing interests: No competing interests
The best way to cut
the Gordian knot of Burgdorfers nematamorph,
and mine for that matter,
is not with Occam's razor.
Competing interests:
None declared
Competing interests: No competing interests
memories of health
the bite that keeps on giving
bitter pills galore
Competing interests:
None declared
Competing interests: No competing interests
In decrying the “Lyme Wars”, Dr. Harvey writes: “But, I choose to
wait until science shows us the mechanism” (1). That is his choice, but
if every clinician decided to “sit this one out” what would happen to the
ill? Is it his position that patients must wait until all the evidence is
in before their illnesses can be addressed?
Such a position is folly, especially if it were expanded to include
other, poorly understood
conditions. And, even in circumstances where the evidence points in one
direction and clinical
methods/treatments appear agreed upon and settled, new breakthroughs often
demonstrate errors in the previous evidence-based construct. Thus, no one
would be treated for fear that the future would prove the current therapy
wrong.
But patients live and die in the present. One charge to physicians,
and all health care professionals, is the relief of suffering. Scientific
evidence may enlighten our medical paths but
when the evidence dims we would be wrong to stop walking. Fumbling in the
dark will take some of us off the trail but others will manage to reach
their destination and patients will be better because of those efforts.
Even the mistakes add to our experiential knowledge; insights we would not
gain from standing still.
Dr. Harvey is right in that moving beyond a "war" mentality would
allow us to focus more completely on the clinical problem. But, until a
truce is declared, those of us who see patients improve with longer
courses of treatment utilizing novel antibiotic combinations must resist
all efforts to push us to the margins, even from colleagues who have
taken to the sidelines.
References
1. Harvey W. http://www.bmj. com/cgi/eletters /335/7626/ 910#182692
Competing interests:
None declared
Competing interests: No competing interests
Dear BMJ Editor,
One notes with interest...and dismay... the number of responses to
the “Lyme Wars” topic thirty years after Steere published the Lyme
hypothesis[1, 2]. There should be little residual conflict given that the
birth of critical thinking began centuries ago with the Renaissance via
many European and UK thinkers, including physician William Harvey
(reference intended). The arguments now appearing as BMJ “Lyme Wars”
letters surprisingly ignore the insight shift of Harvey’s Padua University
schoolmate, Nicolaus Copernicus. Although the essence of De motu cordis
was that truth lay in the reality at hand, a century earlier Copernicus
first made an even more fundamental point, that co-variants do not prove
cause-and-effect. Unexpectedly, both concepts are ignored so frequently in
the Lyme Wars thread that collectively they illustrate what has happened
to recent scientific thinking and immediately clarify how such arguments
can occur. Truth seems to lie in the simplest concepts, as Einstein had
hoped. Here, brought to a grade school level is the concept that has
invalidated most Borreliosis research over the past three decades: The
finding of Borrelia in a chronically ill human does not prove Borrelia
generated the illness. No one has ever elucidated the mechanism by which
Borrelia exerts its claimed pathophysiology.
When Willie Burgdorfer first encountered Borrelia (burgdorferi sensu
lato) in acutely ill New England patients, the correlation was initially
made. Subsequently, it was verified numerous times in endemic areas of the
planet. Ultimately, the numbers reached mathematically validity and in
time revealed a zoonosis cycle bridged by at least one arthropod vector.
This correlation came from Epidemiology devoid of a pathologic mechanism,
but was strong enough to make the case for an acute illness. This method,
as weak as it was, gave rise to the present US CDC case criteria for Lyme
disease as an acute, readily treatable illness with predictable (but not
well understood) signs and symptoms. What then is the dilemma where acute
Lyme disease and chronic Lyme disease are juxtaposed in a mortal face-off?
Enter semantics.
This dilemma did not occur in a vacuum. Outside the boundary of a
relatively limited acute zoonosis, there must exist yet another illness;
an illness so serious and pervasive that many astute clinicians and a few
scientists would go to any means to give credibility to that illness. An
NLM search taking only seconds will indeed uncover a veritable ocean of
persistently ill humans with these similar characteristics: Their illness
is chronic, multi-systemic, unpredictably varied, possibly life
shortening, unsolved and appropriately kept outside the taxonomy of proven
illnesses. The number of assigned labels is extraordinarily large,
however, and vastly more inclusive than chronic Lyme disease is thought to
be. If such an illness exists it necessarily would engender extreme
clinical passion. And given no support by traditional science, labels
would be found in large numbers, with similar descriptors, and would
emerge as historical counterparts. This phenomenon has indeed occurred.
Awareness began to appear between 1970-1980. New semantic identifiers such
as Chronic Fatigue Syndrome, Fibromyalgia syndrome...and since the mid-
1980s, chronic Lyme disease…are only three.[3-13] If we follow the theme
of similar intermittent laboratory abnormalities, basic abnormal physical
findings and fundamental chronic symptoms, at least two-dozen other groups
such as Bannwarth’s syndrome, Ekbom syndrome, Asperger’s syndrome and
others emerge.[14-23]
A short foray into the universe of illness labels above reveals
similar “wars” underway since 1980: Chronic Fatigue Syndrome (CFS) VS
chronic Fibromyalgia syndrome (Fibromyalgia); CFS VS chronic Lyme disease
(Lyme); Lyme and CFS VS Gulf War Syndrome (GWS) are among the obvious.
Clinicians fortunate enough to encounter this larger chronically ill group
outside of New England (where vector prevalence of Borrelia is high) were
not tempted by Borrelia as a generator of chronic illness.[24-29] Rather,
their semantic choices emerged from such random events as participation in
recent wars, or travel to high-humidity regions where fungi are rampant.
In summary, Lyme Wars if followed to its root, is a failure of our
medical education system to insist on teaching scientific method, and
beginning that with the foundation of all truth: language (semantics).
Something did likely occur in the world of human disease some 30 years ago
as these “wars” attest to. “It” could be attributed to the population
explosion, global warming, excess computer use, or even larger numbers of
vaccines. But, I choose to wait until science shows us the mechanism
rather than join the twenty first century’s trust in celebrity (trust
papers from the most notable journals…or be pulled into the current
“matrix” of popular mindset) rather than face the factual illness only
where it exists: the patient. Even medical wars are cognitive constructs,
generated by the human mind. If we are ever to get the term “evidence
based medicine” correct, this is our wake up call. The “evidence” as
Harvey showed us in the sixteenth century is in the ill (or deceased)
human, not textual material often outdated before it reaches print. (812
words)
References
1. Steere, A.C., J.A. Hardin, and S.E. Malawista, Erythema chronicum
migrans and Lyme arthritis: cryoimmunoglobulins and clinical activity of
skin and joints. Science, 1977. 196(4294): p. 1121-2.
2. Steere, A.C., et al., Lyme arthritis: an epidemic of oligoarticular
arthritis in children and adults in three connecticut communities.
Arthritis Rheum, 1977. 20(1): p. 7-17.
3. Eidelman, D., Fatigue: towards an analysis and a unified definition.
Med Hypotheses, 1980. 6(5): p. 517-26.
4. Ballow, M., et al., Familial chronic mononucleosis. Ann Intern Med,
1982. 97(6): p. 821-5.
5. Uretsky, B.F., Does mitral valve prolapse cause nonspecific symptoms?
Int J Cardiol, 1982. 1(5-6): p. 435-42.
6. DuBois, R.E., et al., Chronic mononucleosis syndrome. South Med J,
1984. 77(11): p. 1376-82.
7. Yunus, M.B., Primary fibromyalgia syndrome: current concepts. Compr
Ther, 1984. 10(8): p. 21-8.
8. Caligiuri, M., et al., Phenotypic and functional deficiency of natural
killer cells in patients with chronic fatigue syndrome. J Immunol, 1987.
139(10): p. 3306-13.
9. Byrne, E. and I. Trounce, Chronic fatigue and myalgia syndrome:
mitochondrial and glycolytic studies in skeletal muscle. J Neurol
Neurosurg Psychiatry, 1987. 50(6): p. 743-6.
10. McLaughlin, T.P., et al., Chronic arthritis of the knee in Lyme
disease. Review of the literature and report of two cases treated by
synovectomy. J Bone Joint Surg Am, 1986. 68(7): p. 1057-61.
11. Kriuchechnikov, V.N., [Chronic migrant erythema or Lyme disease--a new
tick-borne Spirochaetales infection]. Zh Mikrobiol Epidemiol Immunobiol,
1985(9): p. 101-9.
12. Eschard, J.P., et al., [Lyme disease without arthritis: presence of
antiBorrelia burgdorferi antibodies in meningoradiculitis following
chronic erythema migrans]. Presse Med, 1985. 14(28): p. 1517-8.
13. Ryberg, B. and I. Thelin, [Lyme disease in Sweden. A patient with
arthralgia associated with chronic erythema migrans]. Lakartidningen,
1984. 81(30-31): p. 2758-60.
14. Calabresi, P.A., et al., Ekbom's syndrome: lipomas, ataxia, and
neuropathy with MERRF. Muscle Nerve, 1994. 17(8): p. 943-5.
15. Sojka, E. and Z. Afeltowicz, [Ekbom's syndrome in a patient with
mitral valve disease and subacute endocarditis]. Pol Tyg Lek, 1978.
33(17): p. 691-2.
16. Harriman, D.G., D. Taverner, and A.L. Woolf, Ekbom's syndrome and
burning paraesthesiae. A biopsy study by vital staining and electron
microscopy of the intramuscular innervation with a note on age changes in
motor nerve endings in distal muscles. Brain, 1970. 93(2): p. 393-406.
17. Fox, W.B., Ekbom's syndrome. J Am Inst Homeopath, 1967. 60(1): p. 26.
18. Roelcke, U., et al., Untreated neuroborreliosis: Bannwarth's syndrome
evolving into acute schizophrenia-like psychosis. A case report. J Neurol,
1992. 239(3): p. 129-31.
19. Henriksson, A., et al., Immunoglobulin abnormalities in cerebrospinal
fluid and blood over the course of lymphocytic meningoradiculitis
(Bannwarth's syndrome). Ann Neurol, 1986. 20(3): p. 337-45.
20. Tantam, D., Asperger's syndrome. J Child Psychol Psychiatry, 1988.
29(3): p. 245-55.
21. Bowman, E.P., Asperger's syndrome and autism: the case for a
connection. Br J Psychiatry, 1988. 152: p. 377-82.
22. Wing, L., Clarification on Asperger's syndrome. J Autism Dev Disord,
1986. 16(4): p. 513-5.
23. Kerbeshian, J. and L. Burd, Asperger's syndrome and Tourette syndrome:
the case of the pinball wizard. Br J Psychiatry, 1986. 148: p. 731-6.
24. Harvey, W.T. and P. Salvato, "Lyme disease": ancient engine of an
unrecognized Borreliosis pandemic? Medical Hypotheses, 2003. 60(5): p. 742
-759.
25. Burgdorfer, W., Discovery of the Lyme disease spirochete and its
relation to tick vectors. Yale J Biol Med, 1984. 57(4): p. 515-20.
26. Pokorny, P., [Incidence of the spirochete Borrelia burgdorferi in
arthropods (Arthropoda) and antibodies in vertebrates (Vertebrata)]. Cesk
Epidemiol Mikrobiol Imunol, 1989. 38(1): p. 52-60.
27. Burgdorfer, W., Vector/host relationships of the Lyme disease
spirochete, Borrelia burgdorferi. Rheum Dis Clin North Am, 1989. 15(4): p.
775-87.
28. Burgdorfer, W., et al., Relationship of Borrelia burgdorferi to its
arthropod vectors. Scand J Infect Dis Suppl, 1991. 77: p. 35-40.
29. Baranton, G., N. Marti Ras, and D. Postic, [Borrelia burgdorferi,
taxonomy, pathogenicity and spread]. Ann Med Interne (Paris), 1998.
149(7): p. 455-8.
30. Williamson, P.K. and J.J. Calabro, Lyme disease--a review of the
literature. Semin Arthritis Rheum, 1984. 13(3): p. 229-34.
31. Berger, B.W., O.J. Clemmensen, and A.B. Ackerman, Lyme disease is a
spirochetosis. A review of the disease and evidence for its cause. Am J
Dermatopathol, 1983. 5(2): p. 111-24.
Competing interests:
None declared
Competing interests: No competing interests
Microbiologist Susan O’Connell gives us more examples of the
inaccuracies and misstatements that have fuelled the “Lyme wars”.
She turns conflicting data into weighty pronouncements about the
diagnosis and treatment of Lyme disease.
Dr. O’Connell cites the Lyme guidelines of the Infectious Diseases
Society of America (IDSA) and the American Academy of
Neurology (AAN) as if these were independent documents that
support narrow treatment recommendations for Lyme disease
(1,2). In reality, these guidelines were developed by overlapping
panels with the respective IDSA and AAN chairmen serving on
both panels, assuring that the guidelines would be “like-minded”
(3). In fact, the wording in the two guidelines is so similar that it
precludes any sense of independent thought by the panel
members. The IDSA tactic of using interlocking and exclusionary
panels to induce other medical societies to rubber-stamp its Lyme
guidelines helps to explain why IDSA is under investigation for
anti-competitive practices in its Lyme guidelines development
process (4).
Dr. O’Connell states that “five double-blind randomised control
studies failed to demonstrate long term benefits and showed
significant risks from prolonged antibiotic therapy for patients with
persistent symptoms following Lyme disease” (5-9). Of the studies
cited, two (Klempner et al. and Kaplan et al.) describe the same
patients and are not independent (5,7). The studies by Krupp et al.
and Fallon et al. in fact demonstrated significant improvement in
fatigue, cognitive function and/or physical function with longer
courses of antibiotics in patients with chronic Lyme disease (6,8).
The recent study by Oksi et al. was underpowered to draw
conclusions about treatment efficacy because the study only
enrolled 152 out of the required 200 patients necessary for
adequate data analysis (9). Of note, the prevalence of an erythema
migrans rash in the study patients was only 28%, significantly
lower than the figure touted by the IDSA guidelines as a ubiquitous
marker of Lyme disease.
Dr. O’Connell claims that our analysis of the insensitivity of
commercial Lyme testing has been addressed by Porwancher and
colleagues (10). In spite of the mathematical gymnastics employed
by those authors, the insensitivity of commercial Lyme testing
remains an undisputed fact that has harmed thousands of Lyme
patients who are denied appropriate diagnosis and treatment
based on these inaccurate tests (11,12). Once again, it is
misleading for Dr. O’Connell to tell us about the marvelous
Lyme tests that are just around the corner while denying care for
patients in her National Health Service based on the insensitive
commercial tests that are currently available.
Dr. O’Connell’s allegation that the evidence-based guidelines of
the International Lyme and Associated Diseases Society (ILADS)
were not peer reviewed is based on a misunderstanding of the
review process. Although the guidelines were not subject to
external review that is often employed for original scientific articles,
they were subjected to in-house peer review by the editorial staff of
the journal. In view of the prestigious membership of the journal’s
editorial board at the time, this form of peer review by an
independent journal trumps the nebulous review process of the
self-published IDSA guidelines described in our previous
communication (13). As a result, the ILADS guidelines provide a
more balanced evidence-based approach to the complex issues
surrounding the diagnosis and treatment of Lyme disease and
associated tick-borne disorders (14).
Raphael B. Stricker, MD
Past President, International Lyme & Associated Diseases Society
San Francisco, CA 94108
Lorraine Johnson, JD, MBA
Executive Director, California Lyme Disease Association
Los Angeles, CA 90068
References
1. Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC,
Klempner MS et al. The clinical assessment, treatment and
prevention of Lyme disease, human granulocytic anaplasmosis
and babesiosis: Clinical Practice Guidelines by the Infectious
Diseases Society of America. Clin Infect Dis 2006;43:1089-1134.
2. Halperin JJ, Shapiro ED, Logigian, E, Belman AL, Dotevall L,
Wormser GP et al. Practice Parameter: Treatment of nervous
system Lyme disease (an evidence-based review) Neurology
2007;69:1-12.
3. Stricker RB, Johnson L. Practice Parameter: Treatment of
nervous system Lyme disease (an evidence-based review).
Neurology, November 1, 2007. Available at http://
www.neurology.org/cgi/eletters/69/1/91.
4. Stricker RB, Johnson L. Lyme disease: A turning point. Expert
Rev Anti-Infect Ther 2007;5:759-762.
5. Klempner MS, Hu LT, Evans J et al. Two controlled trials of
antibiotic treatment in patients with persistent symptoms and a
history of Lyme disease. N Engl J Med 2001;345:85-92.
6. Krupp LB, Hyman LG, Grimson R et al. Study and treatment of
post Lyme disease (Stop-LD). A randomized double-masked
clinical trial. Neurology 2003;60:1923-1930.
7. Kaplan RF, Trevino RP, Johnson GP et al. Cognitive function in
post-treatment Lyme disease. Do additional antibiotics help?
Neurology 2003;60:1916-1922.
8. Fallon BA, Keilp JG, Corbera KM et al. A randomized, placebo-
controlled trial of repeated IV antibiotic treatment for Lyme
encephalopathy. Neurology 2007; Oct 10 epub.
9. Oksi J, Nikoskelainen J, Viljanen M et al. Duration of antibiotic
treatment in disseminated Lyme borreliosis: a double-blind
randomized, placebo-controlled multicenter study. Eur J Clin
Microbiol Infect Dis 2007;26:571-581.
10. Stricker RB, Johnson L. Lyme Wars: Let’s tackle the testing.
BMJ 2007;335:1008.
11. Johnson L, Stricker RB. Treatment of Lyme disease: A
medicolegal assessment. Expert Rev Anti-Infect Ther 2004;2:533-
57.
12. Stricker RB. Counterpoint: Long-term antibiotic therapy
improves persistent symptoms associated with Lyme disease. Clin
Infect Dis 2007;45:149-57.
13. Stricker RB, Johnson L. Lyme wars: The battle continues. BMJ
Online, November 24,2007. Available at http://www.bmj.com/cgi/
eletters/335/7626/910.
14. Cameron D, Gaito A, Harris N, Bach G, Bellovin S, Bock K et al.
Evidence-based guidelines for the management of Lyme disease.
Exp Rev Anti Infect Ther 2004;2(suppl1) S1-13.
Competing interests:
RBS serves on the advisory
panel for QMedRx Inc. In
December 2007 he joined
the editorial board of Expert
Review of Anti-Infective
Therapy.
Competing interests: No competing interests
Dr Cameron’s use of the term “clinical equipoise” related to Lyme
borreliosis is inappropriate in view of the acceptance by most clinicians
of diagnostic and treatment recommendations based on a body of evidence
accrued from over 30 years of international research. These include
guidelines developed by the Infectious Diseases Society of America,
practice parameters of the American Academy of Neurology and similar
recommendations from some European groups, which used carefully developed
and specific case definitions, and do not recommend very prolonged courses
of antibiotics.(1-5) Five double-blind randomised control studies failed
to demonstrate long term benefits and showed significant risks from
prolonged antibiotic therapy for patients with persistent symptoms
following Lyme disease.(6-10) Such treatment cannot therefore be
considered to be beneficial. It might be more appropriate for Dr Cameron
to use the term “theoretical equipoise” to describe his position and that
of his colleagues. (11)
Dr Stricker and Ms Johnson’s concerns regarding the shortcomings of
tests for antibodies to Borrelia burgdorferi have been addressed in detail
by Dr Porwancher and colleagues. (Lyme wars: Critique misses the mark.
http://www.bmj.com/cgi/eletters/335/7628/1008 ) Dr Stricker and Ms
Johnson may also not be aware of the range of well-validated and
commercially available antibody tests now approved for use in Europe.
They include tests which use a variety of recombinant-derived antigens,
including recombinant immunoblots, and others which add recombinant
antigens from different borrelial genospecies to traditional whole-cell
lysate-based tests in order to maximise sensitivity. They are useful
additions to the diagnostic repertoire, and a broad range of tests can now
be applied in cases where there is genuine diagnostic uncertainty.
Further improvements are anticipated with other test methods currently
under development and evaluation.
With reference to my enquiry to the publishers of Expert Review of
Anti-Infective Therapy regarding the peer-review process for the
supplement in which the ILADS guidelines appeared (12), I received an
email reply dated 9th August 2006 from the Editorial Director (on file).
She wrote: “In this instance the guidelines represent a consensus document
produced by a working group consisting of members of the International
Lyme and Associated Disease Society (ILADS). As such, the document was
not subject to our standard review procedures as applied to individual
articles and the guidelines reflect the collective opinion of the ILADS
working group, as set out in the introduction.”.
I have no financial conflict of interests to declare to the BMJ as I
have taken no payments for any medicolegal work as an expert witness, and
have no other potential financial conflicts of interests.
1. Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC,
Klempner MS et al. The clinical assessment, treatment and prevention of
Lyme disease, human granulocytic anaplasmosis and babesiosis: Clinical
Practice Guidelines by the Infectious Diseases Society of America. Clin
Infect Dis 2006;43:1089-1134.
2. Halperin JJ, Shapiro ED, Logigian, E, Belman AL, Dotevall L, Wormser
GP et al. Practice Parameter: Treatment of nervous system Lyme disease (an
evidence-based review) Neurology 2007;69:1-12.
3. Halperin JJ, Logigian E, Finkel M, Pearl R. Practice Parameters for
the diagnosis of patients with nervous system Lyme borreliosis (Lyme
disease). Neurology 1996;46:619-627.
4. Expert Panel for Quality Standards in the Microbiological Diagnosis
of Infectious Diseases (MiQ) MiQ 12 2000: Lyme Borreliosis. Authors:
Wilske B, Zoller L, Brade V, Eiffert H, Gobel U, Stanek G, Pfister H-W.
http://pollux.mpk.med.uni-muenchen.de/alpha1/nrz-borrelia/miq-lyme/miq-
lyme.html .
5. European Concerted Action on Lyme Borreliosis
http://meduni09.edis.at/eucalb/cms/index.php
6. Klempner MS, Hu LT, Evans J et al. Two controlled trial of antibiotic
treatment in patients with persistent symptoms and a history of Lyme
disease. N Engl J Med 2001;345:85-92.
7. Krupp LB, Hyman LG, Grimson R et al. Study and treatment of post Lyme
disease (Stop-LD). A randomized double-masked clinical trial. Neurology
2003;60:1923-1930.
8. Kaplan RF, Trevino RP, Johnson GP et al. Cognitive function in post-
treatment Lyme disease. Do additional antibiotics help? Neurology
2003;60:1916-1922.
9. Fallon BA, Keilp JG, Corbera KM et al. A randomized, placebo-
controlled trial of repeated IV antibiotic treatment for Lyme
encephalopathy. Neurology 2007;
10. Oksi J, Nikoskelainen J, Viljanen M et al. Duration of antibiotic
treatment in disseminated Lyme borreliosis: a double-blind randomized,
placebo-controlled multicenter study. Eur J Clin Microbiol Infect Dis
2007;26:571-581.
11. Freedman B. Equipoise and the ethics of clinical research. N Engl J
Med 1987;317:141-5.
12. Cameron D , Gaito A, Harris N, Bach G, Bellovin S, Bock K et al.
Evidence-based guidelines for the management of Lyme disease. Exp Rev Anti
Infect Ther 2004;2(suppl1) S1-13.
Competing interests:
None declared
Competing interests: No competing interests
The best way to cut
the Gordian knot of health
is Occam's razor.
Competing interests:
None declared
Competing interests: No competing interests
no hope in the UK...
Unless you are able/prepared to pay up for the full Western blot and co-infection tests obtainable in the USA.
Harsh statement perhaps but in my opinion perfectly justified.
I have witnessed the deterioration of my 5 year old son to this condition over the last 6 months and recommend others follow our example (if they can afford to do so ) and send blood and serum to the US for full lab testing - we took this decision prior to receiving the results from a lab in the south-eastern area of the UK (due to poor feedback from others regarding the Elisa test performed). There are many on this site far more experienced than me and i am not qualified to comment other than to say it is obvious to me that Elisa alone is not adequate to rule out Lyme.
It is a sad sign of the times that we as parents took the initiative (a tick bite 4 years ago and recent iritis led us to pursue this line ) and then, armed with the +ive tests for borrelia and +ve FISH for babesia, have had to justify/insist on our our decision to treat with zithromax and atovoquone.
I am not blaming anyone in this letter , our "medical team" have been superb - just highlighting issues we have faced and wonder if general medical awareness of this disease needs to be increased in this country along with the treatment methods adopted in countries who have had far more experience....
Competing interests:
None declared
Competing interests: No competing interests