“The scientific structure is permeated with opinions which pass for valid scientific inductions and with contradictions which are disregarded because it is too painful to face the prospect of the revisions of theory which would be required to reconcile the contradictory observations with the dominant theory” – Carl Clarence Lindegren

“A scientist who is also a human being cannot rest while knowledge which might reduce suffering rests on the shelf” -Dr Albert B. Sabin

Last updated August 2012

This is a summary of a lot of information that we find useful. This is written by a group of patients. Please be aware that we are not Doctors or medical scientists so we would recommend that you question everything that is written here and consult doctors and read books, research papers and the links suggested for more detailed information.

Unfortunately for patients, controversy exists over almost every aspect of Lyme Disease, including:

– The number of people who have it.
– The most appropriate testing procedures to detect if it is active or not.
– The duration of treatment needed.
– The most effective types of antibiotics needed to treat it.
– The incidence of other tick-borne co-infections and how to effectively treat those.

What is needed is for the Doctors and medical scientists from the different sides of the debate to come and work together on this issue for the benefit of their patients. This conflict has been going on for over 30 years and many patients have died or become completely disabled because of it.

For a brief overview of the history of the conflict, read:

Cure unwanted? Exploring the chronic lyme disease controversy and why conflicts of interest in practice guidelines may be guiding us down the wrong path by Johanna Ferguson in the American Journal of Law & Medicine, March 22, 2012

The Lyme Wars – The Lyme-disease infection rate is growing. So is the battle over how to treat it. – The New Yorker, Michael Specter, July 1 2013

A more complete story is given in the book Cure Unknown by Pamela Weintraub.

What is also desperately needed is for much more accurate testing procedures which can more definitively say if the disease is active or not in patients.

For now, patients have to rely on the existing science.

Diagnosis

In the UK the level of knowledge about Lyme Disease is very low, especially compared to North America and other European countries. Many of our members have been misdiagnosed by several doctors – both privately and through the NHS – with Chronic Fatigue Syndrome, M.E., back pain, depression and other conditions before being correctly diagnosed with Lyme Disease, sometimes after months or years. This needs to change because early diagnosis and treatment is crucial as it can increase the chance of a full recovery.

Our members have found that the NHS and private Doctors can overly rely on laboratory tests to diagnose Lyme Disease. Many Doctors around the world emphasise how important it is to use laboratory testing AND clinical diagnosis to reach a correct diagnosis. This is important because serology tests can give false negative and false positive results, although they are supposed to be correct most of the time. Serology tests do not detect the disease itself but the antibodies produced against it. Because people react differently to the presence of disease – as well as the fact that it depends how long the disease has been present, if you have had it before and what strain of the disease it is as well as other factors – serology tests can be inaccurate. If you have had Lyme disease once already – and then had it cured – then your body will already have Lyme antibodies, although often at a lower level than if it was active.

A big part of the problem which currently exists is due to inaccurate testing methods which can not always detect if Lyme disease is currently active or not.

Lyme Disease Action has a page explaining the problems with current testing method which goes into more detail about this. ILADS has more detailed analysis about the problems with current testing methods. Tom Grier also gives a nice overview of the problems associated with some of the different tests for Lyme Disease.

Treatment

In the UK the standard treatment for Lyme disease is two weeks of 100mg Doxycycline two times a day. In some other European countries doctors can prescribe longer courses. In some parts of America Doctors prescribe up to three months of antibiotics.

There is a divide in the medical community over the use of long-term antibiotics to treat Lyme disease. Most cases of Lyme disease are successfully treated with a few weeks of antibiotics, however treatment failure can occur and some patients experience serious long-term health problems after that treatment.

There is controversy over how many people make a full recovery with one short course of antibiotics. There are a range of estimates of what percentage of cases make a fully recovery from that treatment. This is partly because there is insufficient follow-up with many clinical trials 6 months and 1, 2, 3 years after a short course of antibiotics to see the effect. With some trials follow-up is done, with others it is not. Treatment failure rates also depend on how early antibiotics are given in the course of the illness as well as if simultaneous tick-borne co-infections, such as Bartonella or Babesia, are present. For more details look here for a list of papers on this subject.

Treatment – the Infectious Diseases Society of America

One group of doctors and medical professionals more-or-less follow the guidelines set out by the Infectious Diseases Society of America (IDSA). They state: “Most cases of Lyme disease are successfully treated with a few weeks of antibiotics. Using antibiotics for a very long time (months or years) does not offer superior results and in fact can be dangerous, because it can cause potentially fatal complications.” These medical professionals often treat patients with a few weeks of antibiotics and say that there is not scientific evidence to prescribe more antibiotics. If patients continue to experience serious symptoms they can be told that they have “Post Treatment Lyme Disease Syndrome” and that it will normally resolve itself within a year.

Patients who continue to experience serious symptoms can be recommended to take anti-depressants and/or to see a therapist to help deal with their health problems. The NHS more-or-less follows this position, although the 2011 NHS Choices guidelines on Lyme Disease includes the statement: “Most people with mid- or late-stage Lyme disease will require a course of intravenous antibiotics.” Some of our members have been cured with one short course of antibiotics, while others have been very frustrated with the NHS and suffered severe negative health problems because of the lack of openness to the possibility of multiple and/or long courses of antibiotics.

Treatment – International Lyme and Associated Diseases Society and German Borreliosis Society

Another group of doctors and medical professionals more-or-less follow the guidelines set out by the International Lyme And Associated Diseases Society (ILADS) and the German Borreliosis Society. They claim that treatment failure can occur and sometimes recommend longer-term and higher dose antibiotics if short courses of antibiotics do not resolve the problem. They believe that “Chronic Lyme Disease” can exist and that in some cases it can be difficult to completely eradicate the disease. There are different theories as to why this is. The book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub goes into detail of this position and gives examples of different patients being cured with multiple courses of antibiotics. The book Treatment of Chronc Lyme: Fifty-One Case Reports and Essays in Their Regard by Dr Burton A. Waisbren Sr. gives many case studies of patients responding to long-term and higher dose antibiotics.

Some of our members have found that multiples courses of antibiotics have cured them or seriously improved their health condition.

Even the 2010 Lyme disease healthguide pathway on the NHS Map of Medicine (online link here ) acknowledges there is doubt in which position is correct: “there is current evidence to support both IDSA and ILADS schools of thought and it may be some time until one set of guidelines becomes generally more accepted than the other.” It also states: “In the absence of current consensus between IDSA and ILADS:  longer course (more than 21 days) of antibiotics may be beneficial in some sub-groups of patients, eg Lyme encephalopathy, post-Lyme disease, after consultation with Lyme experts.” The NHS in many cases does not currently implement this advice.

The Breakspear Medical Clinic and the Well One Clinic in the UK, the Lyme Borreliosis Foundation in Hungary, the BCA clinic, Clinic Hannover City and Borreliose Lorenz in Germany, the Medical Centre Etterbeek in Belgium and the Arena Clinic in Norway more-or-less follows the ILADS position. There are also many doctors and clinics treating Lyme disease in the US who follow the ILADS position, such as the Waisbren Clinic, Lyme Resource Medical, Dr Steven Harris, Dr. Charles R. Jones and various other ones.

At the bottom of this page there are links and papers from the IDSA and the ILADS positions.

Alternative or complementary treatments

There is a long list of alternative or complementary treatments – offered in books and online – to help treat Lyme Disease. These include:

  • Massage
  • Shiatsu
  • The herbs recommended by Stephen Buhner in his book Healing Lyme
  • Rife machines
  • Homeopathy
  • Collodial silver
  • A wide variety of vitamin and mineral supplements
  • Biomagnetism
  • Miracle Mineral Supplement (MMS)
  • Hyperbaric Oxygen Therapy
  • Quantum Healing Techniques
  • The hot baths and teasel root as recommended by Wolf D. Storl in his book Healing Lyme Disease Naturally
  • And much more.

Our members have tried some of these treatments and have had very mixed results. Our members have a range of thoughts about – and experiences with – some of these therapies. If you want to know more about that you can ask us in person.

The problem is that almost all of them have little-to-no scientific evidence that they actually help people with Lyme Disease (1). Even worse, many of them are taking advantage of people feeling vulnerable, unwell and desperate to get better. Lyme Disease can very strongly affect people mentally, emotionally and physically and it can then make it much more difficult for them to determine what will actually help them. Even more troubling is that some of these treatments can have negative health effects on people.

It would be very useful if many of these claims were scientifically tested so we could know if they actually help or not.

(1) For an overview on what it means to medically test something scientifically have a read of Bad Science by Ben Goldacre.

Further reading

Papers which follow – or support – the position of the International Lyme And Associated Diseases Society (ILADS)

Advance Topics in Lyme Disease: Diagnostic Hints and Treatment Guidelines for Lyme and other Tick Borne Illnesses -Sixteenth 2008 edition – by Joseph J. Burrascano Jr., M.D.

Diagnosis and Treatment of Lyme borreliosis Guidelines. – 2010 Deutsche Borreliose-Gesellschaft e. V. – German Guidelines

Summary of ILADS Guidelines for Lyme Disease

Treatment of Chronc Lyme: Fifty-One Case Reports and Essays in Their Regard by Dr Burton A. Waisbren Sr.

Spirochetal ‘debris’ versus persistent infection in chronic Lyme disease: from semantics to science – Future Microbiol. (2012) 7 (11) , 1243–1246 Raphael B Stricker* & Lorraine Johnson.


Lyme neuroborreliosis – Rapid Response
– BMJ – 25 June 2012 – Caroline J Rayment, GP partner.

Do repeat courses of antibiotics help? – Lyme Disease Action website – 21 June 2012 – Case study of a nurse, Diane, in Cornwall.

LATE AND CHRONIC LYME DISEASE – Treatment guidelines by Dr Sam T. Donta, Prof. of Medicine, Divisions of Infectious Disease and BioMolecular Medicine Director, Lyme Disease Unit Boston University Medical Center, Boston, Massachusetts.

Steven Harris, MD shares Lyme Treatment Strategy

Dr. Sam Donta: The Interface of Chronic Lyme Disease, CFS and FM – lecture presented to Massachusetts CFIDS/ME & FM Association – “Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term—12-18 months, sometimes 24-36 months. This length is not unusual in the treatment of infectious diseases i.e. TB. In the first few months of treatment patients can expect an adverse reaction—symptoms will increase and you’ll feel worse. You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working. The earlier in the disease process that you start on treatment, the more successful it is. The more chronic the condition the less successful it is, and you’ll need to treat over a longer period of time. This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease. There are 10-20% who do not respond— generally those with a strongly positive Lyme test.”

Diagnosing and Treating Lyme Disease – February 29, 2012 – radio show featuring Dr Paul Auwaerter, Johns Hopkins University School of Medicine, Dr. Samuel Shor, George Washington University, Dr. Brian Fallon, Professor of clinical psychiatry. director, Lyme and Tick-Borne Diseases Research Center. and Stephen Barthold,department of pathology, microbiology and immunology

Interview with Dr Sam Donta on treatment strategies for Lyme

What Everyone Needs To Know About Pediatric Lyme Disease – excellent slides from Dr Ann Corson. Also see another slideshow by Dr Corson – Neuropsychiatric Manifestations of Tick Borne Disease

Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub

The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro . by Michael D. Parent & Erica Falkingham – a one-sided review of the literature on the existence of Chronic Lyme Disease.

Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum – Int J Med Sci 2013; 10(4):362-376. doi:10.7150/ijms.5698 – Sapi E, Pabbati N, Datar A, Davies EM, Rattelle A, Kuo BA. – “In this report we present a method to cultivate Borrelia spirochetes from human serum samples with high efficiency. This method incorporates improved sample collection, optimization of culture media and use of matrix protein. The method was first optimized utilizing Borrelia laboratory strains, and later by demonstrating growth of Borrelia from sera from fifty seropositive Lyme disease patients followed by another cohort of 72 Lyme disease patients, all of whom satisfied the strict CDC surveillance case definition for Lyme disease. The procedure resulted in positive cultures in 47% at 6 days and 94% at week 16. Negative controls included 48 cases. The positive identification of Borrelia was performed by immunostaining, PCR, and direct DNA sequencing.”

The Lymphocyte Transformation Test for Borrelia Detects Active Lyme Borreliosis and Verifies Effective Antibiotic Treatment – The Open Neurology Journal, 2012, 6, (Suppl 1-M5) 104-112 – “Abstract: Borrelia-specific antibodies are not detectable until several weeks after infection and even if they are present, they are no proof of an active infection. Since the sensitivity of culture and PCR for the diagnosis or exclusion of borreliosis is too low, a method is required that detects an active Borrelia infection as early as possible. For this purpose, a lymphocyte transformation test (LTT) using lysate antigens of Borrelia burgdorferi sensu stricto, Borrelia afzelii and Borrelia garinii and recombinant OspC was developed and validated through investigations of seronegative and seropositive healthy individuals as well as of seropositive patients with clinically manifested borreliosis. The sensitivity of the LTT in clinical borreliosis before antibiotic trea tment was determined as 89,4% while the specificity was 98,7%. In 1480 patients with clinically suspected borreliosis, results from serology
and LTT were comparable in 79.8% of cases. 18% were serologically positive and LTT-negative. These were mainly patients with borreliosis after antibiotic therapy. 2.2% showed a negative serology and a positive LTT result. Half of them had an early erythema migrans. Following antibiotic treatment, the LTT became negative or borderline in patients with early manifestations of borreliosis, whereas in patients with late symptoms, it showed a regression while still remaining positive. Therefore, we propose the follow-up monitoring of disseminated Borrelia infections as the main indication for the Borrelia-LTT”

Long term and repeated electron microscopy and PCR detection of Borrelia burgdorferi sensu lato after an antibiotic treatment. – Honegr K, Hulínská D, Beran J, Dostál V, Havlasová J, Cermáková Z. Cent Eur J Public Health. 2004 Mar;12(1):6-11. “The diagnosis of Lyme disease in 18 patients has been proved by detection of Borrelia burgdorferi sensu lato when using immunoelectron microscopy or detecting its nucleic acid by PCR in the plasma or the cerebrospinal fluid. The positive results occurred in the plasma or in the cerebrospinal fluid in the period of 4-68 months after an antibiotic treatment. The typical clinical manifestations of Lyme disease were observed in 9 patients and non-specific symptoms in another 9 patients. According to presented results we can recommend repeated examination using PCR of the plasma and other biological specimens in the individuals with persistent or recurring complaints after an acute form of Lyme disease and its antibiotic treatment. Also examination of the cerebrospinal fluid with non-specific symptoms and simultaneously displayed pathology electroencephalogram and/or magnetic resonance imaging findings can be advantageous.

SPECT Brain Imaging in Chronic Lyme Disease by Donta ST, Noto RB, Vento JA, Clin Nucl Med. 2012 Sep;37(9):e219-22. – “Of all patients, 75% demonstrated abnormalities in perfusion to various areas of the brain, most notably the frontal, temporal, and parietal lobes. Patients considered to be seropositive and those considered seronegative had similar rates, types, and severity of perfusion defects. Abnormalities of MRI of the brain were seen in 14% of patients. Treatment with antibiotics, especially those with intracellular-penetrating activity, resulted in resolution or improvement of abnormalities in 70% of patients over a 1- to 2-year period.”

Issues in the Diagnosis and Treatment of Lyme Disease – Open Neurol J. 2012; 6: 140–145. – Sam T Donta* – “As for the treatment of Lyme disease, the earliest phase is generally easily treated. But it is the more chronic form of the disease that is plagued with lack of information, frequently leading to erroneous recommendations about the type and du-ration of treatments. Hence, often cited recommendations about the duration of treatment, eg four weeks is adequate treatment, have no factual basis to support that recommendation, often leading to the conclusion that there is another, perhaps psychosomatic reason, for the continuing symptoms. B. burgdorferi is sensitive to various antibiotics, including penicillins, tetracyclines, and macrolides, but there are a number of mitigating factors that affect the clinical efficacy of these antibiotics, and these factors are addressed. The successful treatment of Lyme disease appears to be dependent on the use of specific antibiotics over a sufficient period of time. Further treatment trials would be helpful in finding the best regimens and duration periods.”

Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease – Scientific Study – Wolfgang Klemann, MD, PhD, Bernt-Dieter Huismans, MD, PhD, Stephan Heyl, MD, PhD – “Abstract: We examined a sample of 90 individuals that had previously received a course of appropriate antibiotics for Lyme disease without experiencing full resolution of their symptoms and had evidence of persistent infection documented by PCR analysis. Mean duration of symptoms was 9.5 years (range 1 – 40 years). The treatment was adapted to the individual case according to clinical response. Long term antibiotic therapy was initiated and patients were treated continuously for at least 6 months, in some cases several years of intermittent therapy was administered. About 38,8% of the patients experienced full remission of symptoms while about 56,7% reported a significant improvement, 5,6% of patients were deemed refractory to therapy. Therapeutic modalities are discussed in detail.”

Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease.by Stricker RB, Delong AK, Green CL, Savely VR, Chamallas SN, Johnson L, Int J Gen Med. 2011;4:639-46.

Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. by Stricker RB, Green CL, Savely VR, Chamallas SN, Johnson L. Minerva Med. 2010 Feb;101(1):1-7. – “CONCLUSION: Prolonged intravenous antibiotic therapy is associated with low morbidity and no IVD-related mortality in patients referred for treatment of neurologic Lyme disease. With proper IVD care, the risk of extended antibiotic therapy in these patients appears to be low.”

Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS). Med Mal Infect. 2009 Feb;39(2):108-1, Clarissou J, Song A, Bernede C, Guillemot D, Dinh A, Ader F, Perronne C, Salomon J. – “The medical management was found to be effective for symptoms, especially for patients with a high probability of chronic TAPOS (NEJM score).”

Inflammatory brain changes in Lyme borreliosis_ A report on three patients by J. Oksi, H. Kalimo, R. J. Marttila, M. Marjamaki, P. Sonninen, J. Nikoskelainen and M. K. Viljanen, 1996, Brain  – “Our experience with this patient suggests that, in rare cases, extended or repeated antibiotic treatments may be necessary to eradicate the spirochaete from sites where it has aquired a latent state.”

Macrolide therapy of chronic Lyme Disease – Dr Sam Donta – “RESULTS: Eighty % of patients had self-reported improvement of 50% or more at the end of 3 months. After 2 months of treatment, 20% of patients felt markedly improved (75-100% of normal); after 3 months of treatment, 45% were markedly improved. Improvement frequently did not begin until after several weeks of therapy. There were no differences among the three macrolide antibiotics used. Patients who had been on hydroxychloroquine or macrolide antibiotic alone had experienced little or no improvement. Compared to patients ill for less than 3 years, the onset of improvement was slower, and the failure rate higher in patients who were ill for longer time periods.”

Tetracycline Therapy for Chronic Lyme Disease, Clin Infect Dis. (1997) 25 (Supplement 1) – “Two hundred seventy-seven patients with chronic Lyme disease were treated with tetracycline for 1 to 11 months (mean, 4 months); the outcomes for these patients were generally good. Overall, 20% of the patients were cured; 70% of the patients’ conditions improved, and treatment failed for 10% of the patients. Improvement frequently did not take place for several weeks; after 2 months of treatment, 33% of the patients’ conditions were significantly improved (degree of improvement, 75%–100%), and after 3 months of treatment, 61% of the patients’ conditions were significantly improved. Treatment outcomes for seronegative patients (20% of all patients) were similar to those for seropositive patients. Western immunoblotting showed reactions to one or more Borrelia burgdorferi-specific proteins for 65% of the patients for whom enzyme-linked immunosorbent assays were negative. Whereas age, sex, and prior erythema migrans were not correlated with better or worse treatment outcomes, a history of longer duration of symptoms or antibiotic treatment was associated with longer treatment times to achieve improvement and cure. These results support the use of longer courses of treatment in the management of patients with chronic Lyme disease. Controlled trials need to be conducted to validate these observations.”

2007 Columbia University Medical Center Leads First Placebo-Controlled Study of Cognitive Impairment Due to Chronic Lyme Disease – Press release – led by Principal Investigator Brian Fallon, M.D., M.P.H., director of the recently established Lyme and Tick-borne Disease Research Center at Columbia University Medical Center – “Findings from the first placebo-controlled study of chronic cognitive impairment after treated Lyme disease (also known as chronic Lyme encephalopathy) demonstrate that patients report moderate cognitive impairment, physical dysfunction comparable to patients with congestive heart failure, and fatigue comparable to patients with multiple sclerosis. In the study, repeated intravenous (IV) antibiotic therapy was shown to be effective in treating cognitive dysfunction and the debilitating pain, fatigue and physical dysfunction associated with this disease.”

Borrelia burgdorferi–a unique bacterium, Brorson Ø., Tidsskr Nor Laegeforen. 2009 Oct 22;129(20):2114-7.

Late-stage Neuropsychiatric Lyme Borreliosis Differential Diagnosis and Treatment – Psychosomatics 1995;36:295-300. Brian A. Fallon, Mori Schwartzberg, Robert Bransfield, Barry Zimmerman, Angelo Scotti, Charles, Webber, Michael Liebowitz – “Guidelines for the treatment of Lyme borreliosis have been changing rapidly. Until recently, a 4-week course of IV antibiotics was considered curative for patients with symptoms of CNS Lyme borreliosis. Now it is recognized that some patients relapse after an initial good response and require additional courses of IV antibiotics”

Lyme Disease: A Neuropsychiatric Illness – By Brian A. Fallon, M.D., M.P.H., and Jenifer A. Nields, M.D., Am J Psychiatry 151:11, November 1994 pp.1571-1580 – “Cognitive impairments among patients with late Lyme encephalopathy often improve with antibiotic treatment (23, 27), suggesting that active spirochetal infection causes the encephalopathy. In Halperin et al.’s study (27) of patients with late Lyme borreliosis, serial neuropsychological testing before and after a course of intravenous antibiotics revealed marked improvement on tests of memory, attention and concentration, conceptual ability, and psychomotor and perceptual motor function. Noteworthy is that many patients with cognitive deficits did not have clinical evidence of focal CNS disease. Results of EEGs, CSF studies, and other laboratory investigations were often normal. MRI scans were abnormal in some of the patients with severe memory impairment, revealing hyperintense T 2 white matter lesions suggestive of edema or inflammation. Some patients with late Lyme encephalopathy continue to have residual neuropsychological deficits after antibiotic treatment.”

The Neuropsychiatric Manifestations of Lyme Borreliosis – Brian A. Fallon, M.D., Jenifer A. Nields, M.D., Joseph J. Burrascano, M.D., Kenneth Liegner, M.D., Donato DelBene, B.A., Michael R. Liebowitz, M.D. – “Patients given antibiotics early in illness tend not to have major late complications, although an unknown percentage of patients treated early still develop late complications. It is now thought that relapse is due to continued presence of spirochetes (2,42).”

Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi – Infect Drug Resist. 2011;4:97-113 – Sapi E, Kaur N, Anyanwu S, Luecke DF, Datar A, Patel S, Rossi M, Stricker RB. – “RESULTS: Doxycycline reduced spirochetal structures ∼90% but increased the number of round body forms about twofold. Amoxicillin reduced spirochetal forms by ∼85%-90% and round body forms by ∼68%, while treatment with metronidazole led to reduction of spirochetal structures by ∼90% and round body forms by ∼80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ∼80%-90%. When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%-55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ∼90%. Following treatment with the other antibiotics, viable organisms were detected in 70%-85% of the biofilm-like colonies.”

Seronegative Chronic Relapsing Neuroborreliosis – Eur Neurol. 1995;35(2):113-7. – Lawrence C, Lipton RB, Lowy FD, Coyle PK. – “We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.”

Lyme disease: the next decade – Infection and Drug Resistance, 2011; 4: 1–9. – Raphael B Stricker, Lorraine Johnson

Long term antibiotic therapy may be an effective treatment for children co-morbid with Lyme disease and Autism Spectrum Disorder – Medical Hypotheses – Mason Kuhna, Shannon Gravea, Robert Bransfield, Steven Harris – 21 February 2012.

Treatment of late Lyme borreliosis – J Infect. 1994 Nov;29(3):255-61. – Wahlberg P, Granlund H, Nyman D, Panelius J, Seppälä I. – “The aim of this study was to develop a treatment for late Lyme borreliosis and to compare the clinical results with serological findings before and after treatment. It was done in the Aland Islands (population 25,000), a region endemic for Lyme borreliosis. The patients were the first consecutive 100 patients from the Aland Islands with late Lyme borreliosis. They were followed for at least 1 year after treatment. The clinical results of treatment were compared with results of analyses of flagellar IgG antibodies to Borrelia burgdorferi done at the time of diagnosis before treatment and up to 12 months afterwards. Short periods of treatment were not generally effective. The outcome was successful in four of 13 treatments with 14 days of intravenous ceftriaxone alone, in 50 of 56 assessable treatments with ceftriaxone followed by 100 days of amoxycillin plus probenecid, and in 19 of 23 completed treatments with ceftriaxone followed by 100 days of cephadroxil. Titres of IgG antibodies to B. burgdorferi flagella declined significantly after 6 and 12 months in the patients who had successful treatments. All patients whose final titres were less than 30% of the initial titre were in the successful group. Their titres usually remained above the upper limit of normal for a long time but a decline to a value of less than 30% of that before treatment was always a sign of cure.”

25 years of experience with Lyme Borreliosis – An interview with Dr Bozsik, a Hungarian Doctor with 25 years experience of treating Lyme Disease, who regularly uses a combination of different antibiotics for the treatment of patients.

LymeMD Blog – the blog of a Doctor treating Lyme and other tick borne diseases in Maryland, United States.

What bacteria don’t know can hurt them by Leila Gray

Policy on Lyme Disease & Tick-Borne Infections in England & the UK – 2011 – by Kate Bloor. See a summary here

Treating Autism With Antibiotics – News video of Doctors, including a Nobel prize winner, treating children who have been diagnosed with autism with antibiotics. One child in the video had Lyme disease and massively improved with prolonged antibiotics. The video discusses patients relapsing and needing new courses of treatment.

French Nobel Prize winner for medicine, Professor Luc Montagnier, is interviewed about Lyme Disease and the need for long-term antibiotics in some. Also talks about how it is much more widespread than previously thought.

Papers which follow – or support – the position of the Infectious Diseases Society of America (IDSA)

NHS Choices guidelines on Lyme Disease –  2011

Treatment of Lyme disease – Last literature review version 19.1 by Linden Hu, MD

Antibodies linked to long-term Lyme symptoms: Researchers find molecules that might mark elusive syndrome – Nature Magazine – August 2011 -by Amy Maxmen

Other useful and interesting papers and articles

Why psychologists need to know about Lyme disease by Sarah L. Marzillier

Sero-epidemiological studies of zoonotic infections in hunters–comparative analysis with veterinarians, farmers, and abattoir workers by Deutz A, Fuchs K, Nowotny N, Auer H, Schuller W, Stünzner D, Aspöck H, Kerbl U, Köfer J.

Unfrozen: There was only one way scientists could unlock the mystery of the famous Iceman. Take away his ice by  Stephen S. Hall. Story on 5,300 year old man. Includes the passage:

“Perhaps most surprising, researchers found the genetic footprint of bacteria known as Borrelia burgdorferi in his DNA—making the Iceman the earliest known human infected by the bug that causes Lyme disease.”

The new culture-based test, launched in America in September 2011, seems promising, although some research has found it not to be effective  (more info here and here). Dr Bozsik in Hungary has also developed new techniques using dark-field microscopy which seem promising in their ability to identify if Lyme Disease is still active. Ultimately, there are many new Lyme tests, and more research is needed to determine which is the most effective one.

Other useful books

Bad Science by Ben Goldacre – Gives useful overview of the scientific method when applied to medicine,  how clinical trials are run and attacks certain alternative health therapies with no scientific evidence.

Free Radicals: The Secret Anarchy of Science by Michael Brooks – This goes over how many medical discoveries have been made, including how scientists fight to have their opinions recognised by the mainstream.

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