Chronic Lyme deserves ILADS guideline!
We, Lyme patients, have established that the current IDSA CBO guidelines are not sufficient and should be replaced by those of ILADS. Patients in Belgium and The Netherlands don’t receive recognition, treatment, compensation or help. Lyme patients have to resort to doctors and research centers both in- and outside the country that don’t get reimbursed by (public) health insurance. Even the NGC ( Agency for Healthcare Research and Quality) for evidence-based guidelines has adopted the ILADS guidelines.
We, Lyme patients and sympathizers,
have noticed that the current IDSA CBO guidelines are not sufficient and should be replaced by those of ILADS.
The Dutch and Belgian CBO guideline is based on the American IDSA guideline for diagnostics and treatment of Lyme disease.
The IDSA is a private institution in whose guidelines the attorney general of Connecticut has found serious impairments in the shape of concealed financial interests and the neglecting of evidence for the existence of a chronic form of Lyme disease (2008). And despite that these guidelines are still being used today. http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284 .
The current IDSA CBO guidelines are even deleted from the American National Guideline Clearinghouse because they do not suffice. The ILADS guidelines are the only ones still included in the American National Guideline Clearinghouse! NGC is a public resource for evidence-based clinical practice guidelines. https://www.guideline.gov/search/search.aspx?term=lyme+disease .
Even Bart-Jan Kullberg, professor of infectious diseases at the University Medical Center Sint Radboud in Nijmegen and member of the commission that prepared the new guideline says: “For acute cases of Lyme the current CBO guideline does suffice. But for chronic Lyme this is different. Back in the day the commission felt that there was so much insecurity about the treatment they decided not to write about it at all. This position got some deserved critiques. If you are not sure about the correct treatment it is better to just write that.” http://www.trouw.nl/tr/nl/4324/Nieuws/article/detail/1157873/2009/08/12/Twijfels-over-de-aanpak-van-Lyme.dhtml (Dutch)
A good replacement of the IDSA/CBO guideline is the guideline for diagnostics and treatment of Lyme drafted by ILADS. This international organization does take all available scientific evidence in consideration and their recommended treatment gives many Lyme patients their life back. http://www.ilads.org/lyme/treatment-guideline.php .
Lyme is a serious and severe disease and it can cause death
The World Health Organization classifies Lyme disease in “up and coming diseases” right next to AIDS, Ebola, SARS and Hepatitis C. These novel diseases are an important cause of suffering and death and impose an enormous financial burden on the society says the World Health Organization http://www.who.int/trade/glossary/story022/en/ .
Daily more patients arise so we can justifiably talk about an epidemic. We feel epidemics should be stopped as soon as possible.
Adjusting the CBO guidelines
After the civil initiative (71k signatures) a solution must be found.
The patient organization has asked multiple times to adjust the current out of date guidelines because they do not suffice. An example of this is the Dutch civil initiative https://petities.nl/petitions/burgerinitiatief-de-ziekte-van-lyme . At this moment it’s 2 years further down the line and still the CBO guideline is not adjusted.
We also massively send out the Royal Lyme letter to indicate that the ILADS guidelines do suffice and are evidence-based: https://www.lymeepidemie.nl/royal-lyme-letter/?lang=en
Human rights are being violated
Article 25 of the human rights says the following:
Every person has the right to a living standard that is high enough for health and well being of themselves and their family and this includes food, clothing, housing, medical care, necessary social services as well as the right to services in case of unemployment, sickness, disability, death of spouse, old age or any other loss of income caused by circumstances out of their will.
A lot of Lyme patients do not get disability or see it decreased and are dependent on family and friends because the IDSA/CBO guidelines in The Netherlands and Belgium say they should be cured after 2 to 4 weeks of antibiotics. There is no scientific study that shows that the borrelia bacteria that causes Lyme disease is eradicated after this amount of time. There are, however, 293 peer-reviewed studies that show that the borrelia bacteria persists after this short treatment: http://www.lymebelgiebelgiqueprotest.be/menu/publicaties/293-peer-reviewed-studies/ .
Lyme patients have to resort to doctors and research centers both in- and outside the country that don’t get reimbursed by (public) health insurance. Many of them can’t afford these treatments.
Because the patients don’t get welfare, they can’t afford food, clothing, housing, medical care and necessary social services.
Therefor it is no surprise some patients commit suicide caused by their terrible pains and hopeless situation.
Everybody has a right to a living standard that is high enough to be healthy
Help us get 40k signatures and sign the petition: https://iladsvoorlyme.petities.nl
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