While the national Lyme disease diagnosis and care protocol (PNDS) should soon be validated by the HAS, a protocol that the learned society of infectious disease specialists is wondering about not signing, the new English recommendations just appeared. A little European hindsight won’t hurt anyone.
For several years, the authority of experts has been called into question by patients, and this is particularly the case for Lyme disease where we are at the stage of legal complaints.
At the origin of these complaints, the willingness of patients to contest the diagnostic tests in force (ELISA and Western-Blot or immunoblot), tests which according to them would not diagnose the disease in some patients, as well as the demand for prolonged antibiotic treatments. in patients suffering from a “chronic” form of the disease.
Diagnostic tests contested by patients
ELISA and immunoblot tests have been in force in France since the consensus of the French Language Infectious Pathology Society (SPILF) of 2006 and it must be said that these are the most scientifically studied tests, as well as the tests also recommended. in other developed countries.
A business has developed around other tests with the promotion of different “alternative” methods by more or less legitimate players. Various pressure groups advocate the use of tests, more sensitive, but also much less specific, with the hope of increasing the number of “validated” patients.
From this point of view, the new treatment protocol, according to what is written here or there, would not eliminate the tests but would no longer make them essential for diagnosis. A debatable argument, except in cases of chronic erythema where they are not positive.
Prolonged antibiotic treatment requested by patients
Another point of conflict with specialists in infectious diseases, the recognition of “chronic Lyme disease”, doctors preferring to speak of “chronic post-Lyme syndrome”. These are proven patients who have received antibiotic treatment but in whom non-specific but chronic pain and symptoms.
These pain, fatigue and other nonspecific symptoms may be secondary to an immune activation syndrome, which sometimes occurs after bacterial or viral infection and has been known for a long time. But various lobbyists seek to promote the concept of persistence of bacteria in the body, and therefore the need for prolonged antibiotic treatment.
This is done through a few publications in scientific journals of 2th order and whose results would be widely criticized by other specialists. The “evidence” invoked would be of the same nature as that which had been put forward to explain the infectious theory of rheumatoid arthritis 30 years ago!
A national political protocol more than scientific?
Developed for a little over a year by doctors and patient associations, the national diagnostic and care protocol (PNDS) should define the modalities of management of Lyme disease caused by the bacterium Borrelia burgdorferi instead of the 2006 recommendations. It should soon be validated by the Haute Autorité de Santé (HAS), but not necessarily by the French Language Infectious Pathology Society (SPILF), the scientific society of French infectious disease specialists which disapproves of certain aspects. . A first.
At this stage of opposition, it is advisable to look at what our neighbors are doing. The Belgians, the Swiss and the Germans have recommendations extremely close to the French recommendations of 2006, and some are very recent, which does not plead in favor of major revolutions. The English have just updated their own recommendations, those of the NICE, and they seem to suggest some changes but refute prolonged antibiotic treatment.
Guidance on choosing an antibiotic when treating people with #LymeDisease #BMJInfographic @will_s_t https://t.co/PcEEAK2yBi pic.twitter.com/m7ekbDqHhZ
– The BMJ (@bmj_latest) April 15, 2018
English recommendations
These recommendations from NICE, the very serious and very independent British recommendations institute, are based on a careful analysis of the most recent valid scientific data.
The diagnosis remains based on symptoms, an evocative context and traditional diagnostic tests (ELISA and immunoblot), but only if the latter are carried out in validated laboratories. This rule is strict except in cases of typical chronic erythema where the tests are not yet positive and where the antibiotic treatment can be started immediately (as in France).
The proposed antibiotic treatment is now recommended at higher doses and for longer periods than before (3 weeks), in order to avoid as much as possible a failure linked to under-treatment.
NICE points out that Lyme disease symptoms can take months or years to resolve, even after successful antibiotic treatment, for several reasons: diagnoses other than Lyme or co-infections with Lyme, re-infection with Lyme. Borrelia burgdorferi, antibiotic treatment failure, post-infection immune response and Lyme disease sequelae in different organs.
A second course of antibiotics may be considered if the persistence of symptoms gives rise to suspicion of failure of the first treatment. Chronic Lyme disease and prolonged treatment are not recognized.
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