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Editorials

Lyme disease: time for a new approach?

BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h6520 (Published 03 December 2015) Cite this as: BMJ 2015;351:h6520

Re: Lyme disease: time for a new approach?

Per Loekken, Professor emeritus in Pharmacology, University of Oslo

To the Editor:

Re: Lyme disease: time for a new approach?

Many patients with chronic Lyme disease tell about an improved, and some even a dramatically improved life situation, with "non-conventional" treatment. When many people report similar experiences, reasons for this should be investigated. Curiosity is the essential driving force for science.

There are two wings in the debate on the most appropriate treatment of Lyme disease. IDSA (Infectious Disease Society of America) and ILADS (International Lyme and Associated Diseases Society)

IDSA claims protracted symptoms like fatigue and joint and muscle pain after more than 4 weeks of treatment with antibiotics, to be a Post-Lyme disease syndrome. They consider the syndrome not to be associated with an active infection. The reasons are debated. One assumption is that protracted symptoms are after-effects caused by injuries to tissue and immune system during infection.

ILADS argues that Lyme disease is essentially a clinical diagnosis based on the medical history and symptoms, because currently available laboratory tests are unreliable. They consider that lack of adequate primary antibiotic treatment can establish chronic infection with persistent or recurrent symptoms such as fatigue, pain and cognitive problems.

Ideally, all treatment should be based on evidence from controlled clinical trials. However, it is difficult to conduct such studies with patients in later stages of Lyme disease, because their disease courses are very diverse and unpredictable. Co-infections (E.g. Babesiosis, Bartonellosis, Ehrlichiosis and Chlamydia) contribute to even greater variability.

For this group of patients it may be wise to base treatment on experience-based knowledge and patients' needs in a given situation. The two wings in the Lyme controversy should be willing to learn from each other - as well as listening to patients' experiences and wishes. No one has a monopoly on the truth.

As a retired professor my main occupation in the past 3-4 years has been Lyme disease and associated co-infections, because my daughter and three of her children have been infected with these microbes.

My knowledge of the subject is based literature studies and experiences from diagnoses and treatment of my family members in Norway and Germany, as well as to have met a large number of similar patients at home and abroad.

My family members had to travel abroad to get help and effective treatment, because patients with Lyme disease are met by with skepticism and distrust by the Norwegian public health services, and told that their suffering is psychosomatic.

Diagnosis and treatment abroad, which usually requires several trips, is costly and not without problems. Only resourceful patients, either financially or intellectually, have this possibility.

If a patient with is treated with antibiotics longer than 4 weeks in Norway, the physician may lose his or her authorization to prescribe antibiotics. The Norwegian Board of Health Supervision accepts only treatment of Lyme disease in accordance with the guidelines of the IDSA. Is such a dogma-obedient national health policy appropriate and justified?

As stated in the Editorial: Previous examples in medical history, such as the delayed recognition of the role of Helicobacter pylori in gastric disease, have shown the consequences of ignoring findings that contradict our current beliefs about a disease. In an era where patient centered care is considered the cornerstone of high quality and integrated medicine, we cannot allow ourselves to repeat past mistakes at our patients’ expense.

The scientific community should have an open mind. Likewise – our health authorities.

Competing interests: No competing interests

21 December 2015
Per Loekken
Professor emeritus - Pharmacology
University of Oslo, Norway
PO Box 1119 Blindern, 0317 Oslo, Norway