In his new book, Dr. Horowitz gently discusses the issue. He talks about a paradigm change. This doesn’t answer the question for patients on a visceral level.
I surveyed some physician friend colleagues asked them if they can think of another disease that has been as divisive as Lyme disease. They always come up empty-handed.
Your doctor is being bashed by medical boards, ridiculed by other medical professionals, even shunned and ostracized and generally not having a good time (in some arenas, not globally).
You are angry, infuriated, incensed, bellicose or just pissed off.
Patients new to this world all ask same question .Why?
There is a war going on. Years ago, I had a conversation with an infectious diseases specialist I thought it was collegial; at the end of the discussion I said “I guess we’ll just have to agree to disagree.” She said no we won’t and proceeded to report me to the Medical Board. Doctors don’t usually report their colleagues to Medical Boards. Most follow the rule, “people who live in glass houses shouldn’t throw stones”
Phenomenologically, Dr. Steere and is infectious diseases specialist saw a Lyme as a vectorborne illness causing joint pain or rash: something straightforward. Something easy to treat.
Phenomenologically, Dr. Burrascano and primary care colleagues, saw patients in Lyme endemic areas as poly-symptomatic; patients had every symptom in the book.
Dr. Steere, Dr. Burrascano, myself and likely all the physicians I can think of were taught that there is no disease that causes so many disparate symptoms. These has a “positive review of systems,” meaning they has a psychiatric disorder. Easy one.
Lyme breaks the mold.
Dr. Burrascano and others thought all these patients cannot be crazy; something else is going on. The cohort of sick patients lived in rural areas known to have a lot of Lyme, they enjoyed outdoor activities, they had a history of previously treated Lyme disease, they had a history of tick bites, the had a history of rashes and summer flus, or they just had an insidious, progressive disease.
First impressions are important. Dr. Steere’s first impression was that Lyme causes joint pain and is easy to treat.
Dr. Burrascano’s first impression was that these were very sick patients, commonly referred to a “train wrecks.” These patients got better when given antibiotics; symptoms returned when antibiotics were stopped; symptoms got better again antibiotics were restarted. The first impression was that Lyme is a complex multi-system disease which is hard to treat.
These two groups were describing something entirely different, something universes apart. Both were called Lyme disease.
The war began. Steere was reported to a Medical Board. Burrascano was doomed. Once the war broke out the truth didn’t matter. Since Steere and his colleagues are associated with Ivy League institutions they won the battle. They have created educational programs for doctors espousing their point of view point and ridiculing the views of the other camp.
I hop the answer to the big question is contained in the above narrative.
In this war I see the IDSA crowd is calling lymies and their doctors crazy and “antiscience.” Lymies believe the IDSA crowd is involved in some vast conspiracy. Get a grip.
It comes down to stubbornness, hubris and ego. They call me “antiscience.” A friend once told me: “watch what they call you; that is what they are.”