Center for Statistical Sciences, School of Public Health, Brown University
It's a complex and challenging problem
Hard to get a proper diagnosis (hard to diagnose)
One of the most difficult challenges is getting an accurate diagnosis. Unfortunately, Lyme Disease symptoms can mimic other illnesses. Lyme Disease patients have been misdiagnosed with fibromyalgia, Multiple Sclerosis, Lupus, ALS, arthritis, Parkinson’s Disease, and chronic fatigue. Another challenge is that the current Lyme Disease tests provide too many false negatives.
Many people with Lyme Disease symptoms have received negative blood tests for years as they got progressively worse. Not only is this disease hard to diagnose, it can be very difficult to eliminate it from the body.
Difficult to get effective treatment
Adequate treatment is a big challenge. Many patients have difficulty finding medical providers that are knowledgeable about how to treat Lyme disease. Many practitioners only follow the CDC and IDSA recommended protocol of just a few weeks of antibiotics.
Those medical providers who go beyond these protocols can be at great risk of losing their medical license. Many of these practitioners have been scrutinized by a medical board review panel. Some have even had their medical license suspended.
Medication side-effects that make you feel horrible (pain)
If you are fortunate to be able to find a doctor that is willing to give you long-term antibiotics, you may struggle with the side effects of nausea, fatigue, insomnia, vision problems, liver damage, digestive problems, burning sensations in the veins, or body aches.
Antibiotics can take many, many years to put a chronic Lyme infection into remission. Unfortunately, in some cases, long-term antibiotics are unable to clear out a Lyme infection and the accompanying co-infections. Why? Because bacteria hide in your body where drugs have a hard time killing them.