Rapid Responses to the above:

FEATURE: Alison Tonks Lyme wars BMJ 2007; 335: 910-912 [Full text]

Rapid Responses: Submit a response to this article

Rapid Responses published:

Lyme Wars: Tackling the Testing.

Raphael B. Stricker, Lorraine Johnson   (5 November 2007)

Lyme Disease is not a simple infection

David C Owen   (7 November 2007)

Conflicting Information on Lyme disease

Stephanie F. Woodcock   (8 November 2007)

Rapid responses to this article

Peter M English   (10 November 2007)

Call a truce to the 'war'

Kathryn Walker   (10 November 2007)

Lyme survival in Europe

Stella R Huyshe   (10 November 2007)

Real risks associated with long-term antibiotic treatment

Donald Poretz, M.D., 22209   (10 November 2007)

reputable science

RUSSELL J HUXTABLE   (10 November 2007)

Lyme Disease - Another Perspective of a Scientist-Patient

Alita J. Lyons   (10 November 2007)

If antibiotics are so "dangerous" then medicine needs to provide an alternative solution.

Joan S. Crawford   (11 November 2007)

Antibiotics for pigs but not Lyme patients?

Lou Overman   (11 November 2007)

Lyme Wars

Sheila E Darbyshire   (12 November 2007)

Re: Real risks associated with long-term antibiotic treatment

Sandy K Berenbaum, LCSW, BCD   (12 November 2007)

Re: "Lyme Wars"

Susan O'Connell   (23 November 2007)

Re: "Lyme Wars"

Stella R Huyshe   (24 November 2007)

Susan O'Connell Conflicts

Miguel Perez-Lizano   (24 November 2007)

Lyme Wars: The Battle Continues.

Raphael B. Stricker, Lorraine Johnson   (24 November 2007)

But still it moves, still we suffer

Stewart Dean   (24 November 2007)

Borreliosis Testing

Ria Heslop   (24 November 2007)

A partisan position by a public body is not appropriate on this issue

Angela Kennedy   (24 November 2007)

Lyme Wars: Tackling the Testing. 5 November 2007
Raphael B. Stricker, MD 450 Sutter Street, Suite 1504, San Francisco, CA 94108, Lorraine Johnson Send response to journal: Re: Lyme Wars: Tackling the Testing.	To the Editor: The generally balanced report by Alison Tonks about the "Lyme Wars" (3 November) fails to provide a balanced view of one issue: while the Centers for Disease Control and Prevention (CDC) warn practitioners about "various unvalidated tests", they fail to warn us about the Food and Drug Administration (FDA)-approved commercial tests for Lyme disease. The two-tier testing system endorsed by the CDC has a high specificity (99%), meaning that this approach yields few false- positives. But the tests have a uniformly miserable sensitivity (56%), meaning that they miss 88 out of every 200 patients with Lyme disease (Table). By comparison, AIDS testing has a sensitivity of 99.5%, meaning that these tests miss only one out of every 200 AIDS cases. In simple terms, the chance of a patient with Lyme disease being diagnosed using the FDA-approved and CDC-sanctioned commercial tests is about the same as a coin toss, and the poor test performance assures that many patients with Lyme disease will go undiagnosed. Until we scrap the worthless commercial tests for Lyme disease and find a better way to make the diagnosis of this protean illness, the "Lyme Wars" will continue unabated. 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 Sensitivity/Specificity of Commercial Two-Tier Testing for Lyme Disease Study/Year Sensitivity Specificity Schmitz et al, 1993 66% 100% Engstrom et al, 1995 55% 96% Ledue et al, 1996 50% 100% Trevejo et al, 1999 29% 100% Nowakowski et al, 2001 66% 99% Bacon et al, 2003 68% 99% MEAN TOTAL 56% 99% 1. Schmitz et al. Eur J Clin Microbiol Infect Dis. 1993;12:419-24. 2. Engstrom et al. J Clin Microbiol. 1995;33:419-27. 3. Ledue et al. J Clin Microbiol. 1996;34:2343-50. 4. Trevejo et al. J Infect Dis. 1999;179:931-8. 5. Nowakowski et al. Clin Infect Dis. 2001;33:2023-7. 6. Bacon et al. J Infect Dis. 2003;187:1187-99. Competing interests: RBS serves on the advisory panel for QMedRx Inc.
Lyme Disease is not a simple infection 7 November 2007
David C Owen, General Practitioner 30 The Parade, Cardiff CF24 3AD Send response to journal: Re: Lyme Disease is not a simple infection	The article ‘Lyme wars’ written by Alison Tonks [1] reveals that the author has a shallow understanding of the topic of Lyme disease. Those who read the whole of the article will realise that the opening statement “Lyme disease is a simple bacterial infection spread by ticks” lacks credibility. Publications on Lyme disease are increasing at an exponential rate as any Medline search would reveal and there is plenty of evidence that Lyme disease is a complex and not a simple condition. Treatment of the condition sometimes requires prolonged antibiotic therapy particularly where diagnosis has been delayed. Unfortunately there is no laboratory marker of active disease at the present time and treatment decisions have to be made on clinical grounds. In some cases response to repeated or prolonged treatment is dramatic enabling resumption of a normal working life. Doctors who are members of the USA organisation ILADS appreciate this and it is my experience that they are not ‘self serving mavericks’ but sympathetic doctors who have the best interests of patients in mind. I have no doubt some patients receive inappropriate or ineffective treatment but the challenge is to try and determine those who will respond to treatment rather than to trivialise the condition as Alison Tonks has attempted to do in her article. Dr. David C Owen General Practitioner, Cardiff. Member of ILADS Medical Adviser to the UK Charity Lyme Disease Action. [1] Lyme Wars. Tonks A. BMJ November 2007: 335: 910-912 Competing interests: None declared
Conflicting Information on Lyme disease 8 November 2007
Stephanie F. Woodcock, Chair, Lyme Disease Action 53 Kernick Road, Penryn, Cornwall TR10 8NS Send response to journal: Re: Conflicting Information on Lyme disease	Although it is important for science to understand the characteristics of the Borrelia burgdorferi sensu lato bacterium and whether or not it persists in the body of a human host, there is an even more important question that should take precedence. The question is 'What constitutes effective treatment for Lyme patients?' Even if the widespread reports by patients that they continue to have the sensation of active disease after treatment turn out to have a different explanation; nevertheless, solving the full biology behind these reports is less important than getting people better. The first paragraph of Alison Tonks' article might lead one to think that Lyme disease is a simple entity. However, the author's own descriptions later in the article indicate that all is not quite as straightforward as it at first seems. The first paragraph states that there is a fairly characteristic rash, only later does it become clear that some but not all patients actually develop this rash. According to a review of papers about early Lyme disease*, there is a rate of reporting the occurrence of Erythema migrans (EM) rash that varies between 35% and 59% of cases. Though an EM rash is the commonest visible sign of Borrelia burgdorferi s. l. infection, it is still quite possible that only a minority of patients have the rash. Patients are done a disservice if a doctor looks only for evidence of EM rash in considering a Lyme diagnosis. Symptom pattern is also less straightforward than at first appears. Firstly, we are assured that there is a well-documented pattern of symptoms but later, the symptoms are described as being common and non- specific. The article also raises the view that mainstream medical opinion thinks that the causative bacterium cannot survive initial treatment and continue to cause symptoms; contrastingly, the reader is also informed that the Centers for Disease Control (CDC) diagnostic process "cannot rule out persisting infection in patients with persisting symptoms. Nothing can." This is further borne out by the information that "blood tests for antibodies are unreliable, particularly in the long term." Against a background of these and other conflicting pieces of information, we know of many patients who are having to seek their own recoveries by a process of trial and error to find which antimicrobials work for them. Lyme Disease Action is finding that many of the long-term patients who contact us can, and do, recover with antibiotic treatment. Many of these recoveries occur in a manner not predicted by the very limited research that has so far been done upon antibiotic treatment protocols. These recoveries rely on the treating physician keeping faith with the patient and allowing them to persevere with treatment. We know of cases of months or years of treatment having been needed to bring a patient to recovery. The final reward of seeing a person able to re-engage with the world, children able to return to school, adults able to return to work, is completely worth all the obstacles that patients are currently obliged to overcome. The current controversy regarding Lyme disease as described in this article can, we believe, be resolved. We would be happy to strive for the goals mentioned at the end of the article since they are all amongst the measures that we have been calling for throughout our current 'Lobby for Lyme' campaign, full details of which can be found at: www.lymediseaseaction.org.uk Yours sincerely Stephanie Woodcock *Stricker RB, Lautin A. 'The Lyme wars: time to listen.' Expert Opin Investig Drugs 2003;12:1609-1614. Competing interests: None declared
Rapid responses to this article 10 November 2007
Peter M English, Public Health Physician Leatherhead, Surrey, KT22 9AE Send response to journal: Re: Rapid responses to this article	I am interested to note that there have been three "rapid responses" to this article (http://www.bmj.com/cgi/eletters/335/7626/910, as at 16:55 on 8 Nov 07). All appear to come from special interest groups. One declares a competing interest, while the other two, from the Medical Advisor and the Chair of "the UK Charity Lyme Disease Action" fail to declare any competing interests. I wonder what the position of this charity is in the discussion initiated by Tonks? Competing interests: None declared
Call a truce to the 'war' 10 November 2007
Kathryn Walker, Neuroborreliosis patient Unable to work as undergoing treatment Send response to journal: Re: Call a truce to the 'war'	The opening lines reveal a trivialisation of what is a very complex illness with a manifestly wide range of sympstoms. My personal experience and contact with other patients tells me that knowledge of what these varied symptoms is largely unknown to general practitioners, neurologists and psychiatrists. Neither are they aware of the unreliability of the tests currently available. Because of this the opportunity for "safe effective treatment" is often lost and the disease is allowed to develop. Why it should then become a political issue is a mystery to me. Also, referring to the problematic in terms of a 'war' does not help but only serves to pointlessly polarise the issue. The patients then become the casualties of this 'war' and many are exhausted and damaged by the 'fight' for treatment. More research, more information, more public awareness of this danger is what is needed. Call a truce and display a greater willingness to listen to patients. They will tell you if the treatment is being effective or not. Competing interests: None declared
Lyme survival in Europe 10 November 2007
Stella R Huyshe, Business Analyst Hexagon House, Pynes Hill, Exeter EX2 5SE Send response to journal: Re: Lyme survival in Europe	Saying that there is a “growing and vociferous patient lobby” in the US that thinks the Lyme bacterium can survive initial treatment (Alison Tonks in Lyme Wars 3 November) implies that this is a view of patients only. Readers should be aware that in Europe researchers are increasingly questioning not whether Borrelia survives, but how (1). 1. Hunfeld at al Int J Med Microbiol. 2006 May;296 Suppl 40:233-41. Competing interests: None declared
Real risks associated with long-term antibiotic treatment 10 November 2007
Donald Poretz, M.D., President Infectious Diseases Society of America, 22209 Send response to journal: Re: Real risks associated with long-term antibiotic treatment	To the Editor: It is vital to understand the very real risks associated with long- term antibiotic treatment and the risks associated with misdiagnosis. In more than 20 years there has not been one scientifically valid study published in the peer-reviewed medical literature that proves that the benefit of long-term antibiotic treatment outweighs the risks, which are considerable. Calling an unexplained illness with non-specific symptoms “Lyme disease” when it’s actually something else can delay the appropriate treatment for patients. In fact, several points are worth clarifying in Alison Tonks' recent article about Lyme disease: • The Infectious Diseases Society of America (IDSA), the U.S.’s leading society of infectious disease experts, developed its guidelines on Lyme Disease based on the best currently available science and according to well-established rules of evidence-based medicine. There are many other credible, well-respected medical organizations whose view of Lyme disease is similar to IDSA's, including the American Academy of Pediatrics, the American Academy of Neurology, the American College of Physicians, the Centers for Disease Control and Prevention, and major ID textbooks. • The reason the IDSA guidelines do not support long-term antibiotic therapy is because there is not enough evidence to show it is effective, but there is evidence that it can be harmful for patients. • It is inappropriate – and a disservice for patients – to include unproven, experimental therapies in clinical practice guidelines for Lyme disease or any other medical condition. • IDSA supports continuing research into Lyme disease and a range of other infectious diseases. Our number one priority is to promote the best possible care and treatment for patients. And, as the oath taken by every physician emphasizes, “Above all, do no harm.” Sincerely, Donald Poretz, MD, FIDSA President, Infectious Diseases Society of America Competing interests: None declared
reputable science 10 November 2007
RUSSELL J HUXTABLE, writer france Send response to journal: Re: reputable science	Tonks concludes her article by referring to the agreed perspective that more research is required. As an outsider, albeit one with a current lyme disease diagnosis, I have been bewildered by the fact that as yet no trial has been conducted which provides a clear measurable outcome offering unambiguous support to either entrenched position. Would it not be relatively straightforward to find 200 or more people with an agreed diagnosis based on serology, divide them into 2 groups, treat the first in accordance with mainstream guidelines and the second in accordance with the guidelines endorsed by 'patient groups'. Some subjects in the first group may be seen to require more treatment after the initial course and some patients in the second group may feel they have recovered within 12 months. However this likehood will provide further evidence in support of whichever hypothesis is chosen. The fact that as yet a study as outlined above has yet to be operationalised seems reprehensible when you consider the numbers of people involved and the level of disability which results from this complicated illness. This also fuels the widely held view amongest patients that there is something 'sinister' going on here blocking the necessary research. Competing interests: None declared
Lyme Disease - Another Perspective of a Scientist-Patient 10 November 2007
Alita J. Lyons, Lyme patient 120 W. 86th St. #12D, New York, NY, 10024 USA Send response to journal: Re: Lyme Disease - Another Perspective of a Scientist-Patient	As a former HCV researcher and current Lyme patient, I am always surprised by new articles on the "Lyme Wars," though I think I am beginning to detect a pattern in them. These articles are usually opinion pieces, and they often manage to gloss over most of the really interesting microbiology, both new and old, that's been done on spirochetal infections. I can never understand why that is, but then scientists are always surprised when basic science is ignored for political reasons, which has been happening in the biological, climatological, and evolutionary fields lately. I suspect in the case of Lyme disease that dismissing the current science, as Ms. Tonks does by characterizing Lyme as "a simple bacterial infection", has more to do with real estate values than it does with moral ones. The more I review what is known about spirochetes, the more I respect them as disease causing agents. Studies are piling up on the incredible genetic complexity of Borrelia burgdorferi (1-3). Its remarkable strain diversity (4), along with differing morphological forms is well documented in studies dating back to the 1930's (5-6). Solid evidence shows that Bb and its relatives can easily evade the immune system via inter and intracellular sequestration, pleomorphism, and antigenic variability (7- 10). Clinically, it is well documented that spirochetal infections can and do cause serious, protean, multi-systemic infections (11-13). The literature is also full of examples of antibiotic resistance and persistence, seronegative infections, as well as relapsing and remitting symptomatology (14-17). In light of all this, I'll keep taking my antibiotics, thank you. I'd also like to keep the services of my physician, who actually treats chronic Lyme patients, many of them, and does not dogmatically turn away sick and symptomatic people. Ms. Tonk's article makes my continued access to successful treatment just ever so slightly more doubtful, while doing nothing to address a truly enigmatic, fascinating and potentially dangerous bug. A disease that is so profoundly debilitating should never be so profoundly marginalized. 1. Casjens S, Palmer N, van Vugt R et al. A bacterial genome in flux: the twelve linear and nine circular extrach romosomal DNAs in an infectious isolate of the Lyme disease spirochete Borrelia burgdorferi. Mol. Microbiol. 35, 490–516 (2000). 2. Qiu WG, Schutzer SE, Bruno JF et al. Genetic exchange and plasmid transfers in Borrelia burgdorferi sensu stricto revealed by three-way genome comparisons and multilocus sequence typing. Proc. Natl Acad. Sci. USA 101, 14150–14155 (2004). 3. Stewart PE, Hoff J, Fischer E, Krum JG, Rosa PA. Genome-wide transposon mutagenesis of Borrelia burgdorferi for identification of phenotypic mutants. Appl. Environ. Microbiol. 70, 5973–5979 (2004). 4. Younsi H, Sarih M, Jouda F, Godfroid E, Gern L, Bouattour A, Baranton G, Postic D. Characterization of Borrelia lusitaniae isolates collected in Tunisia and Morocco. J Clin Microbiol. (4):1587-93 (2005). 5. Sergent E; Foley H. - Des periodes de latence du spirille chez le malade atteint de fievre recurrent. Compt. rend. acad. sci., clviii, pp. 1926-1928 (1914). 6. Preac-Mursic V, Wanner G, Reinhardt S, Wilske B, Busch U, Marget W. Formation and cultivation of Borrelia burgdorferi spheroplast L-form variants. Infection 24, 218–226 (1996). 7. Aberer E, Koszik F, Silberer M. Why is chronic Lyme borreliosis chronic? Clin. Infect. Dis. 25(Suppl. 1), S64–S70 (1997). 8. Porcella SF, Schwan TG. Borrelia burgdorferi and Treponema pallidum: a comparison of functional genomics, environmental adaptations, and pathogenic mechanisms. J. Clin. Invest. 107, 651–656 (2001). 9.Stevenson B, von Lackum K, Wattier RL, McAlister JD, Miller JC, Babb K. Quorum sensing by the Lyme disease spirochete. Microbes Infect. 5, 991–997 (2003). 10. Embers ME, Ramamoorthy R, Philipp MT. Survival strategies of Borrelia burgdorferi, the etiologic agent of Lyme disease. Microbes Infect. 6, 312–318 (2004). 11. Pinto DS. Cardiac manifestations of Lyme disease. Med Clin North Am. Mar;86(2):285-96, (2002). 12. Gibbs RS, Roberts DJ. Case records of the Massachusetts General Hospital. Case 27-2007. A 30-year-old pregnant woman with intrauterine fetal death. N Engl J Med. Aug 30;357(9):918-25, ( 2007). 13. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. Nov;151(11):1571-83, (1994). 14.Straubinger RK, Summers BA, Chang YF, Appel MJ. Persistence of Borrelia burgdorferi in experimentally infected dogs after antibiotic treatment. J. Clin. Microbiol. 35, 111–116 (1997). 15. Preac-Mursic V, Weber K, Pfister HW et al. Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection 17, 355–359 (1989). 16. Lawrence C, Lipton RB, Lowy FD, Coyle PK. Seronegative chronic relapsing neuroborreliosis. Eur. Neurol. 35, 113–117 (1995). 17. Stricker RB, Lautin A, Burrascano JJ. Lyme disease: point/counterpoint. Expert Rev Anti Infect Ther. Apr;3(2):155-65, (2005). Competing interests: None declared
If antibiotics are so "dangerous" then medicine needs to provide an alternative solution. 11 November 2007
Joan S. Crawford, Chemical Engineer unable to work due to ill health CH2 2AN Send response to journal: Re: If antibiotics are so "dangerous" then medicine needs to provide an alternative solution.	I am a patient with symptoms identical to those described as chronic Lyme disease. For the last ten years mainstream medicine has had no answers to my condition, which has resulted in loss of my career, wealth and friends. Three years ago independent doctors, with no obvious vested interest apart from an eagerness to scientifically examine the evidence and act upon it, diagnosed me with chronic bacterial infections, which could clearly be seen using darkfield microscopy. Antibiotic treatment commenced in January 2005 and continues to this day. I am now significantly recovered to a point where I can now consider returning to full time employment. The alternative mainstream treatment on offer consisted of nothing more than symptom management, which incidentally did not work. The denial of the severity of ongoing symptoms along with subsequent disability caused by minimal, standardised, one-size fits all 2-4 weeks antibiotic therapy after an infected tick bite is shocking. That is if the patient ever receives antibiotic treatment at the time of infection, in the first place. Too few doctors know anything about Lyme disease to be sure that erythema migran rashes, Lyme disease and its co-infections are diagnosed correctly in a timely manner. “It’s hard to know when the current acrimonious stand off will end.” I can predict with certainty when this will occur. When the patient can rely on doctors to be knowledgeable about diagnosing and treating Lyme disease and its co-infections, especially in primary care, and when they are being listened too, diagnosed correctly and given the treatment, whatever that may be, to resume a normal life. Often the Lyme disease patient hears the mantra that antibiotics are “dangerous”. How can antibiotics be more dangerous than a disabling illness, which leaves the patient in constant pain and sometimes in a wheelchair? If antibiotics are so "dangerous" then I hope upcoming research provides less "dangerous" treatments to eradicate the bacteria and co-infections in a swift and timely fashion. Competing interests: None declared
Antibiotics for pigs but not Lyme patients? 11 November 2007
Lou Overman, Lyme patient none Send response to journal: Re: Antibiotics for pigs but not Lyme patients?	What we have in the Lyme wars is a group of doctors who have ignored relevant medical literature, including their own previously published articles, actively working to prevent treatment of an infectious disease by another group of doctors. The first group helps to produce an ever increasing number of cases by supporting an inadequate testing procedure. Then they refuse adequate treatment for the chronic cases they have produced, ensuring that the burden of morbidity and mortality grows heavier every year. Some of them have benefited financially from testing, vaccines, patents, and work for insurance companies. It is astonishing that the behavior of these people is being called mainstream, while the doctors who try the hardest to correctly diagnose and adequately treat tickborne diseases are deemed mavericks! If this kind of behavior is really mainstream, we are in a lot of trouble, and not just with Lyme disease. Anyone who puts financial gain ahead of patient welfare is in the wrong profession. This kind of perversion in the healing arts does not stay conveniently in its lyme box, it spills over to tarnish the profession and medical research in general. If the government research funding agencies changed their practices and admitted the existence of chronic lyme, we might actually get some of the thorny problems resolved. Instead, they fund primarily those who will deny the disease and trivialize its symptoms and underestimate how much treatment is needed. The patients surely do not want treatment forever, if there is a better way. They also certainly do not want to be left without useful treatment for a treatable disease. How many more autopsies have to find borrelia spirochetes in brains before officials change course? Governments have got to recognize their responsibility, even if it is inconvenient to fight more than one infectious plague at a time. They came late to the AIDS epidemic and now are dragging their feet with Lyme and related tickborne diseases. They must listen to the patients, and find researchers who are willing to go wherever truth leads them. Dr. Osler, founder of Johns Hopkins, said of diagnosis that if you listen to the patients, they will tell you what is wrong with them. I think he would be astonished that the Lyme patients' voices are not being heard in diagnosis--and ignored in evaluating the efficacy of treatment--by too many doctors and medical researchers. We are frequently threatened with the specter of antibiotic resistance caused by longterm treatment of chronic lyme cases; meanwhile, the pigs and chickens and apple orchards are able to get vast amounts of antibiotics without any interference. Are patients the only ones to find this to be ludicrous and wrongheaded? Having observed the strange handling of tickborne diseases like Lyme, I have finally decided that this kind of behavior is apparently involved in other diseases, and is the reason why we have not made any significant progress in Parkinson's, Alzheimer's, ALS, chronic fatigue, autism, cancers, and any number of others. Competing interests: None declared
Lyme Wars 12 November 2007
Sheila E Darbyshire, psychologist Stockport Send response to journal: Re: Lyme Wars	It is heartening to see the dilemmas facing patients and physicians concerning Lyme Disease being debated at long last in this journal. A rising ride of angry and disillusioned patients and their families, not to mention their confused and poorly informed doctors, are finally having the issues and controversy surrounding Lyme disease diagnosis and treatment aired and examined. This has been a long time coming - and the patient numbers are rising. The problem as I see it, is that medical authorities are relying on old and outdated research material. Knowledge about this devastating illness is developing apace, but little recent research is disseminated to doctors in the field, presumably because it is not seen as a 'British' problem. Of course, it is only a 'problem' if cases are recorded and in Britain they are often not. The Health Protection Agency (HPA)for example, appears to base its latest recommendations on guidelines produced recently by the Infectious Diseases Society of America, who based their work almost entirely on research by Klempner et al, whose seriously skewed sample groups were held to be representative of the actual patient population, leading to very unhelpful and retrograde guidelines for patient care. This is lazy medicine to say the least. When will such apparently worthy organisations learn that improved co -operation and collaboration with patients' groups, which usually possess considerable expertise in their field, encourages the flow of cutting edge knowledge, which has true relevance and therapeutic value for the long- suffering patients with Lyme and related diseases. Sheila Darbyshire Dip.SW, BA(Hons)Psych. Competing interests: None declared
Re: Real risks associated with long-term antibiotic treatment 12 November 2007
Sandy K Berenbaum, LCSW, BCD, Psychotherapist - private practice Brewster, New York, USA Send response to journal: Re: Re: Real risks associated with long-term antibiotic treatment	Regardless of the spin coming from the Infectious Disease Society of America, they do not have the patients' best interests in mind when they refer to their new guidelines. They have ignored significant literature supporting the use of long term antibiotics, and dismissed the case histories of the thousands of patients whose health was restored by treatment for chronic Lyme disease and co-infections. In order to support their "conclusions", they refused to allow participation in the development of the guidelines by members of the International Lyme and Associated Disease Society or the Lyme Disease Association, and even refused to allow their own member doctors who disagreed with their point of view to participate. As a psychotherapist who has seen children and adults with debilitating Lyme disease for the past 16 years in my practice, I have witnessed their health and functioning restored by long term treatments, including antibiotics. I have seen children return to school, after months or years on homebound instruction. I have seen whole families return to functioning, and heard the stories of missed and delayed diagnosis and inadequate treatment that brought them to the point of disability, unremitting pain, and in some cases, a level of incapacity that left them bedridden or in a wheelchair, prior to finding a doctor that recognized the chronicity of the illness, and treated efficaciously. If long term antibiotics are so dangerous, why are years of tetrocycline used to treat acne in adolescents? Why is there so little respect coming from the leadership of the IDSA for the dedicated physicians who are treating the most severe cases of tick-borne illness, and so little interest in the success of those treatments? Competing interests: None declared
Re: "Lyme Wars" 23 November 2007
Susan O'Connell, Consultant Microbiologist Lyme Borreliosis Unit, HPA Microbiology Laboratory, Southampton General Hospital, Southampton SO16 6 Send response to journal: Re: Re: "Lyme Wars"	Issues of diagnosis and management of Lyme disease in the USA, highlighted in this article have also become contentious in Europe. Unfortunately, the misdiagnosis of Lyme disease in patients who have other serious, life-threatening or long-term conditions was not clearly addressed in the report. Patients with multiple sclerosis, motor neurone disease, scleroderma, polymyalgia rheumatica, systemic lupus erythematosis, Addison’s disease and other conditions have been diagnosed with “chronic Lyme disease” in the UK. Misdiagnoses led to delayed or inappropriate management, and were potentially life-threatening in several instances. Some of these patients were harmed by treatments that they had received for Lyme disease through intravenous line-associated sepsis, adverse reactions to antibiotics, hepatobiliary and renal damage and C difficile colitis. Others also suffered financially because of high treatment costs. Some misdiagnoses were made by clinicians who followed the nonspecific symptoms list and case descriptions in the International Lyme and Associated Diseases Society’s guidelines (1), which apparently had not undergone the peer review process of the journal in which they appeared as a supplement (E. Manzotti, Futuremedicine.com, personal communication 9th August 2006). Careful reading of the guidelines and their supporting references show numerous inaccuracies, selective quotation and reliance on early studies performed before modern diagnostic tests and treatments were available. The guidelines do a disservice both to misdiagnosed patients and to those with continuing symptoms following Lyme disease, who require careful clinical and laboratory evaluation for evidence of active infection and for other explanations for their symptoms, so that appropriate management may be selected. (2) It is incorrect that tests for antibodies to Borrelia burgdorferi are unreliable, particularly in the long term. Patients with late Lyme disease are rarely seronegative(3,4). Recently-infected patients may have negative antibody tests, because the antibody response can take some weeks to develop (3,4). It is unsurprising if patients diagnosed with “chronic Lyme disease” using the nonspecific ILADS criteria are seronegative, or that antibody test assessment panels using sera from such patients give misleading data about test performance. Conversely, tests from some commercial “Lyme-specialty” laboratories claiming a high degree of sensitivity in “chronic Lyme disease” patients have very poor specificity. Poorly validated tests used by some fringe practitioners were the focus of a report for the Department of Health (5). The two-tier approach to B burgdorferi antibody testing, recommended by the US Public Health Service and European experts 12 years ago, remains valid. Test methods have improved greatly in recent years, particularly with the introduction of recombinant and synthetic peptide antigens from different borrelial genospecies. The long term goal is to develop single stage tests that increase sensitivity in early infection and maintain the high sensitivity and specificity that the two-tier process currently provides at later stages of infections. Considerable progress has been made in applying proteomics and bioinformatics to Lyme disease diagnosis, as demonstrated by presentations at the second Banbury Conference on the Laboratory Diagnosis of Lyme Disease in September 2007. These new methods require further development and validation but hold out great promise for future diagnostic tests. 1. 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. 2. Feder HM, Johnson BJB, O’Connell S, Shapiro ED, Steere AC, Wormser GP. A critical appraisal of chronic Lyme disease. N Engl J Med 2007;357:1422-30. 3. Wilske B, Fingerle V, Schulte-Sprechtel S. Microbiological and serological diagnosis of Lyme borreliosis. FEMS Immunol Med Microbiol 2007;49:13-21. 4. Aguero-Rosenfeld ME, Wang G, Schwartz I, Wormser GP. Diagnosis of Lyme borreliosis. Clin Microbiol Rev 2005;18:464-509. 5. Duerden BI. Unorthodox and unvalidated laboratory tests in the diagnosis of Lyme borreliosis and in relation to medically unexplained symptoms. Department of Health, London, UK, 2006. http://www.dh.gov.uk/assetRoot/04/13/89/17/04138917.pdf Competing interests: None declared
Re: "Lyme Wars" 24 November 2007
Stella R Huyshe, Business analyst Pynes Hill Exeter Ex2 5SE Send response to journal: Re: Re: "Lyme Wars"	Susan O’Connell is right to highlight the misdiagnosis of Lyme disease in patients who have other conditions as this is as important as the reverse. However, the criticism heaped on a non specific symptom list produced by the International Lyme and Associated Diseases Society is somewhat unjust, particularly when considering the European manifestations of the disease. A study of European patients undertaken by Strle et al (1) concluded that “the clinical features associated with B. afzelii are much less specific (than with B. garinii) and more difficult to diagnose.” Now it is not known how many cases in the UK are due to B. afzelii but no one can put the figure at zero. This species is currently not known in the USA, so why is the NHS using US guidelines? We would seem in urgent need of specific UK clinical guidelines based on UK, or at least European, case studies. The statement that “Patients with late Lyme disease are rarely seronegative” acknowledges that some patients with late Lyme disease are seronegative. In the absence of clinical guidelines that recognise the findings of Strle’s paper, these patients are likely to remain misdiagnosed. Two tier testing can be considered a valid approach, particularly in a cash strapped NHS, as long as it is backed up by clinical judgement. However, in a climate where non specific symptoms are deemed to be not Lyme disease, this clinical judgement can not be well informed. If the current tests (including the existing single stage C6 test) were good enough to be reliable then the UK specialist Lyme Borreliosis Unit would not be investigating new diagnostic methods and tests that hold out great promise. 1. Strle F, Ruzić-Sabljić E, Cimperman J, Lotric-Furlan S, Maraspin V. Comparison of findings for patients with Borrelia garinii and Borrelia afzelii isolated from cerebrospinal fluid. Clin Infect Dis. 2006 Sep 15;43(6):704-10 Competing interests: None declared
Susan O'Connell Conflicts 24 November 2007
Miguel Perez-Lizano, Retired 98604 Send response to journal: Re: Susan O'Connell Conflicts	It is simply incredible that Susan O'Conell reports no conflicts of interest in her response supporting the Lyme disease guidelines by the Infectious Diseases Society of America. The New England Medical Journal article on chronic Lyme disease, which she coauthored, discloses "Dr. O'Connell reports serving as an expert witness related to Lyme disease issues in civil and criminal cases in England." She has coauthored many papers with other members of the Lyme cabal whose stranglehold on this disease will, hopefully, soon come to an end. Competing interests: None declared
Lyme Wars: The Battle Continues. 24 November 2007
Raphael B. Stricker, MD 450 Sutter Street, Suite 1504, San Francisco, CA 94108, Lorraine Johnson Send response to journal: Re: Lyme Wars: The Battle Continues.	We wish to address the inaccuracies and misstatements in the communication from microbiologist Susan O’Connell concerning the “Lyme Wars” article (3 November). Dr. O’Connell states that the evidence-based guidelines of the International Lyme and Associated Diseases Society (ILADS) were not peer reviewed, citing a personal communication from an individual who is not associated with the publisher of the guidelines. Prior to publication, the ILADS guidelines underwent internal peer review by Expert Review of Anti- Infective Therapy, an independent medical journal (1). In contrast, the Lyme guidelines of the Infectious Diseases Society of America (IDSA) were self-published by IDSA in its own journal, Clinical Infectious Diseases (2). Self-publication implies a lack of independent peer review that probably contributed to the overly restrictive nature of the IDSA guidelines. Dr. O’Connell maintains that the two-tier approach to Lyme antibody testing remains valid, and she gives two references to support her view (3,4). The first reference relies on data from 1988 and 1989 using “home- brew” Lyme antibody testing in patients with acrodermatitis and lymphocytic meningoradiculitis, and the sensitivity of this irrelevant test system was only 50-77% in patients with chronic disease (3). The second article contains the following statement: “Relatively few studies using currently available commercial tests have evaluated the performance of the recommended two-tier testing on well-characterized sera from patients with extracutaneous manifestations of Lyme borreliosis” (4). The few studies that have been performed found a consistently poor sensitivity of the two-tier test system essentially equivalent to a coin toss, as outlined in our recent letter to BMJ (5). Thus the two-tier approach endorsed by IDSA and Dr. O’Connell is inadequate for the diagnosis of Lyme disease. Dr. O’Connell’s optimism about the wonderful new Lyme tests that are just around the corner is unwarranted. The only test that has become commercially available in recent years is the C-6 peptide ELISA, which was shown to have less sensitivity than the current two-tier test system (6). Until a “gold standard” test becomes available, physicians will need to rely heavily on their clinical judgment rather than commercial testing to support a diagnosis of Lyme disease. 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. Cameron D, Gaito A, Harris N, et al. Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti-Infect Ther 2004;2(1 Suppl):S1-13. 2. Wormser GP, Dattwyler RJ, Shapiro ED, 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; 41:1089- 1134. 3. Wilske B, Fingerle V, Schulte-Sprechtel S. Microbiological and serological diagnosis of Lyme borreliosis. FEMS Immunol Med Microbiol 2007;49:13-21. 4. Aguero-Rosenfeld ME, Wang G, Schwartz I, Wormser GP. Diagnosis of Lyme borreliosis. Clin Microbiol Rev 2005;18:464-509. 5. Stricker RB, Johnson L. Lyme Wars: Let’s tackle the testing. BMJ 2007;335:1008. 6. Gomes-Solecki MJ, Meirelles L, Glass J, Dattwyler RJ. Epitope length, genospecies dependency, and serum panel effect in the IR6 enzyme- linked immunosorbent assay for detection of antibodies to Borrelia burgdorferi. Clin Vaccine Immunol 2007;14:875-9. Competing interests: RBS serves on the advisory panel for QMedRx Inc.
But still it moves, still we suffer 24 November 2007
Stewart Dean, Email system administrator Bard College, Annandale NY, USA, 12504 Send response to journal: Re: But still it moves, still we suffer	When I first contracted Lyme (along with babesiosis, since ticks can carry numerous diseases), it was as if I'd aged years in 3 months. From vigorous health in my early 50's, I very nearly had to use a cane to walk. All sorts of diagnoses were proposed (no bulls-eye rash), but a month of antibiotics restored me to 85% of my prior health. Withdrawal of them brought a quick resumption of symptoms. After two years of varied antibiotic treatment, I was cured....until I was reinfected (this time with a bulls-eye rash). And so it has gone, with periods of health, followed by reinfection. The "First,do no harm" that Poretz quotes is, in practice, "Give no aid" to those whose symptoms and history conflicts with his beliefs. Much as with Semmelweiss so long ago, this is a war of entrenched belief and professional reputation against very real suffering and disability. What is the harm in restoring the life and vitality of people who respond to extended antibiotic treatment? Much like Galileo leaving the Inquisition, we say to those like Dr. Poretz, "Still we are sick, still we have the symptoms", but they refuse to see that or help us. Such doctors aren't scientists, but true believers, threatening our chances at treatment...and a life. Competing interests: Recurring (or chronically) Lyme infected since 1999
Borreliosis Testing 24 November 2007
Ria Heslop, Disabled CO3 9TA Send response to journal: Re: Borreliosis Testing	As a patient being miss-diagnosed in the UK for over 6 years and left to become disabled by the UK NHS I personally believe the Lyme disease testing in the UK is inadequate. Once diagnosed in the USA with Late stage Lyme disease I then came to realise that no person within the NHS was conversant with treating late stage Lyme disease. Not only are you left to be disabled by a failed UK system you are often then denied your treatment or funding for your treatment - in my case funding was given although no person knew how to manage this treatment. It is to this end that many UK Lyme sufferers have no choice than to fund private treatment in the USA. Whilst the medical profession are fightling about what is right and what is wrong they forget that there a patient behind this fighting, that needs urgent treatment. One thing doctors are taught in medical schools is to treat the patient, not the test result. It is mentioned here that UK testing is reliable although, please refer to the following information from my treating USA Consultant, who has over 20 years experience in treating Lyme Disease. Recent surveys Show as little as 5% of UK General Practitioners know how to diagnose Lyme disease and even this small percentage rely on the characteristic red bulls-eye rash (EM) at the site of the bite although, this is present in less than 40% of patients. When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have borreliosis and the testing is stopped right there. Screening tests that are positive are often followed by the Western blot. The blot is a “confirmatory” test, as opposed to a screening test. (Blots are performed for other infections -- it is a type of test, not a test uniquely for the borreliosis bacteria.) Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel. Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the bacteria will bind to those exact parts that are embedded in the gel. When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as IND, +, ++ or +++ depending upon the intensity or darkness of the band. Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa). Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons. The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93. It’s important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive. Research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy supported this. For this reason the screening test are practically worthless, and is why the Western blot needs to be used to “screen” for borreliosis, even though it is a “confirmatory” test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients’ false positive blot results occurred in only three percent of them, based upon research presented at the 2000 International Lyme Borreliosis conference. Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the bacteria, there was a 97 percent chance they would feel better with antibiotics. One thing doctors are taught in medical schools is to treat the patient, not the test result. If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored, even if the ‘official’ interpretation is negative or equivocal. Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease. Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centres for Disease Control (CDC). Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. Surveillance criteria should not be used in day-to-day clinical medical practice. Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC’s surveillance criteria. Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB). In fact, the 31 kDa band is so tightly associated with borreliosis that a vaccine was made from that outer surface protein. In other words, those criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have borreliosis. Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded. Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics. Same day head-to-head comparisons of borreliosis Western blot results revealed that reference laboratories do a better job of finding antibodies against Borrelia burgdorferi than regular laboratories. This raised the obvious concern that the reference labs might be over diagnosing patients with borreliosis. That is one of the reasons why 700 patients were researched. However, the false positive rate was just three percent. This concludes reference laboratories do not over-diagnose borreliosis. False negative test results, on the other hand, are a much bigger problem, in my experience. Negative Western blots convert to positive in 18 to 24 percent of cases, if four weeks of antibiotics are given, and then the patients go off antibiotics for 10 to 14 days before the repeat Western blots are done. In other words, a false negative Western blot converts to positive in about one out of five borreliosis patients. This is a much greater problem than a false positive rate of only three percent. Competing interests: None declared
A partisan position by a public body is not appropriate on this issue 24 November 2007
Angela Kennedy, Social Sciences Lecturer and Researcher IG8 8DH Send response to journal: Re: A partisan position by a public body is not appropriate on this issue	Susan O Connell states that: "Unfortunately, the misdiagnosis of Lyme disease in patients who have other serious, life-threatening or long-term conditions was not clearly addressed in the report. Patients with multiple sclerosis, motor neurone disease, scleroderma, polymyalgia rheumatica, systemic lupus erythematosis, Addison’s disease and other conditions have been diagnosed with “chronic Lyme disease” in the UK. Misdiagnoses led to delayed or inappropriate management, and were potentially life-threatening in several instances.” I find it absolutely remarkable that, as a representative of the Health Protection Agency, apparently concerned about misdiagnosis, she has failed to address the ‘flip’ side of misdiagnosis, especially on a particular patient population, those who have been diagnosed as ‘Chronic Fatigue Syndrome’ and not been tested, let alone treated, for Lyme borreliosis at onset by the National Health Service, but who have exhibited both clinical and laboratory signs of this infection, both at onset, and later in their illness. Such patients are often extremely ill and disabled, and the lack of appropriate diagnosis and treatment at onset and even later in their illness, has “led to delayed or inappropriate management, and were potentially life-threatening in several instances“. Dr O Connell has been made aware of this problem by various parties over the years. However, it is obvious from her correspondence here and elsewhere that Dr O Connell and colleagues have taken a particular, highly partisan, position on the issue of Lyme in Europe, by opposing the ILADS position and supporting the IDSA position, despite its known problems. This partisan position is not appropriate for a representative of a body whose: “ …role is to provide an integrated approach to protecting UK public health through the provision of support and advice to the NHS, local authorities, emergency services, other Arms Length Bodies, the Department of Health and the Devolved Administrations.” (1) What is needed from the HPA and related agencies, to address what appears, from the evidence available, to be a growing health problem and its devastating effects on sufferers, is a careful, non-partisan, and scientific acknowledgement of the evidence available (including that which contradicts IDSA‘s position). What is NOT needed is carefully worded, but nevertheless inadequately substantiated, partisan discrediting of the position of others, a problem also present in the Duerden Report (referenced as supporting evidence by Dr O Connell in her response), a report that made various serious allegations about other parties, but managed to do so without including any substantiating evidence for those claims, or indeed any references at all, a remarkable omission for a government-commissioned report. (2) Footnotes 1. From the HPA website: http://www.hpa.org.uk/hpa/default.htm 2. Duerden BI. Unorthodox and unvalidated laboratory tests in the diagnosis of Lyme borreliosis and in relation to medically unexplained symptoms. Department of Health, London, UK, 2006. http://www.dh.gov.uk/assetRoot/04/13/89/17/04138917.pdf Competing interests: Critic of the psychiatric paradigm of ME/CFS and claims around 'medically unexplained symptoms'. Mother of a young woman who was diagnosed with 'ME/CFS'.