Why Doctors miss Lyme Disease
"What can I help you with today?" asks the doctor at the start of your visit.
You start to list off the myriad of symptoms causing you problems - your right knee is swollen and painful, you can't sleep, you have constipation, you're tired all the time regardless of how much you sleep, your sense of taste is off, you run into walls every time you round a corner, you can't seem to focus on anything, you have heart palpitations, your neck hurts every morning no matter how many different pillows you try, your legs and feet feel tingly and numb - when the doctor interrupts and says, "But what are your two biggest complaints today? We really only have time for your top two."
This is how doctors are trained, both allopathic and naturopathic. Due to time constraints, they only have time to hear and address your top one or two "chief complaints" at any one visit. Once those two are addressed, they move on to the next two at a subsequent visit, the next two at the visit after that, and so on. But when it comes to Lyme disease, this approach doesn't work.
First, Lyme is a multi-system disease. By just focusing on two symptoms at a time, each symptom is treated as though it exists in a vacuum and is unrelated to any other symptom. After all, how could a swollen knee and constipation possibly be related? Or insomnia and your sense of taste? The doctor may very well miss the significance of multiple system involvement and thus overlook the fact that there is a common source for the disparate symptoms. Palliation of symptoms may help a patient feel better for a time, and there's nothing wrong with that, but without more, progress against the illness cannot be achieved. To have true healing, the root cause must be addressed.
Second, patients don't return to doctors who are not helping them to feel better. These doctors lose the opportunity to treat the next two symptoms and thus lose the opportunity to eventually consider a common cause. Many Lyme patients report having seen 20, 30, 40 or more physicians before the true cause is discovered. To see that many physicians requires stamina and determination. How many patients weary of the search and simply give up? How many people remain ill who should have been properly diagnosed early?
Third, physicians are quick to refer to specialists when they don't have an immediate answer or when they don't want to put in the work. I once overheard a student clinician and a supervising physician discussing a patient. This patient had many symptoms including heart palpitations and numbness and tingling. If that wasn't enough to make one suspicious of Lyme, the fact that this patient had a medical history that included Lyme and Lyme treatment should have put their suspicions on high alert. As they were preparing referrals to cardiologists and neurologists, I suggested they consider reactivated Lyme. The supervising physician admitting to not knowing much about Lyme, stated that it was a difficult and time consuming disease to understand, and as a result they would stick with the track they were on. Lost opportunity.
Fourth, specialists are specialist for a reason - they are highly focused on one subject area. If you are in need of a heart surgeon, you want a surgeon who only works on hearts, not someone who operates on knees one day, livers the next day, and hearts when you show up. Specialists can be lifesavers. However, when one is a hammer, everything tends looks like a nail. So a referral to a rheumatologist for that inflamed and painful knee may result in a diagnosis of rheumatoid arthritis. And if it doesn't, they are unlikely to be able to offer an alternative diagnosis or appropriate treatment.
Finally, too many physicians don't believe in Lyme disease. Worse, they mock it. I had a supervisor who used to refer to the "cult of Lyme" until we sat down and I pointed out one would never say that about cancer and one would never say that about AIDs. I also mentioned how unfair such language was to students' learning experience and to their future patients. It is inconceivable to me how a physician can decide to believe that an illness doesn't exist, particularly in the face of so much evidence to the contrary. However, one can't see what one doesn't look for.
An MD colleague, who also suffered with Lyme, once said to me that you have to "get it" in order to get it. While I am certain the non-believers would finally "get it" if they were to contract Lyme, it boggles my mind that it has to be this way.