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To: Clive Kay Head of the NHS / Nicola Blackwood Public Health Minister
Accurate testing and fair treatment for people with chronic Lyme disease
* Training for health professionals for late stage Lyme disease/chronic Lyme disease
* Accurate Testing and treatment for co infections associated with Lyme disease.
* Patients to be able to talk to Health professionals about concerns to be treated fairly on history of symptoms as well as test results.
* Patients to be able to have access to medical records
Why is this important?
Recently, a number of high-profile people have been complaining that they have a chronic form of the disease that resists treatments and persists with severe symptoms - but such a condition is not widely accepted by doctors. Others have talked about Lyme disease being under-diagnosed or being the root cause of other illnesses.
But the idea of a Lyme infection that is not completely treated and lingers for years is controversial. Most doctors say that the vast majority of people with the disease, if caught early, can be treated completely with just a short course of antibiotics. "There is no consensus over whether chronic Lyme actually exists.
This needs to change.
Many patients with Lyme disease remain ill after antibiotic treatment or receive no treatment at all due to doctors who treat them poorly, refuse to diagnose or
Misdiagnose as other diseases.
Thousands of people suffer daily,
Some misdiagnosed as other illnesses after a weak- positive or negative test.
Often health professionals ignore history of symptoms leading them to treat themselves in pain with no ongoing support.
Lyme disease & associated co-infections can be often misdiagnosed as ME/Chronic fatigue syndrome /rheumatoid arthritis or mental illness.
We need to understand why some patients respond to treatment and others don’t. We also need to understand how Lyme disease progresses, how co-infections affect the illness, how the disease is transmitted, and which treatments are the most effective.
The ultimate goal is to improve the quality of life for patients with Lyme disease based on fair and affordable treatment /testing with doctors that are knowledgeable on the disease and its Co-infections.