There is a term that the Lyme community uses that has upset some of the medical world: “Lyme-literate doctor.” This term has been developed and used specifically to highlight those who are highly educated and experienced in diagnosing and treating Lyme disease and other tickborne diseases. They are heavily networked with other Lyme-literate providers and consult on difficult cases.
Sometimes when this term is spoken in a primary-care physician’s office, the conversation can take a sudden downward turn. Most doctors that I’ve spoken with who are not considered Lyme-literate take great offense to this term because they feel that it implies that they are “illiterate.” The Lyme community uses this as a basis when seeking out a provider who has vast knowledge about this multisystemic, complex infectious disease.
I personally have no qualms whatsoever about using the term. I think it pays honor and respect to those providers who saved my life. I went through 23 different doctors and specialists who could not figure out what was medically wrong with me and who misdiagnosed me many times over. And I continued to grow sicker with every passing day. Lyme-literate providers who, knowing that they live or practice in an endemic region, take it upon themselves to study and learn on a continuing basis about new strains, new diagnostic tools, and up-to-date treatment protocols. Researchers from Yale University and John Hopkins University are consistently discovering new strains that existing protocols do not respond to. They are running trials to find new treatments that combat, slow down, and potentially eradicate the bacteria.
Lyme disease and anaplasmosis are not the only concerns Maine residents need to be concerned with. We have babesia residing here, a malaria-based tickborne disease that does not respond to the typical Lyme disease treatment of doxycycline. The treatment protocol for babesia is so different from Lyme disease and anaplasmosis, even though early in its infection state it can mimic Lyme disease. So many tickborne diseases start off mimicking Lyme disease, so when a patient presents to the primary care physician saying she or he was bitten by a tick and the doctor runs a Lyme test, often it comes back negative. The Maine Center for Disease Control & Prevention has gone on record to state that the existing ELISA test many doctors run in their offices is at best 40 percent accurate. So, with a negative test, the patient goes home and, if infected, the disease slowly spreads.
A few weeks ago, I wrote about the two standards of care that providers follow. Both are scientifically evidence-based guidelines; however, one set is outdated and has been removed from the National Guidelines Clearinghouse while the other set remains current and in effect.
What is frustrating for patients is that medical providers are so divided on this matter that it has influenced whether insurances will cover doctor visits and much-needed treatment protocols. At one time, there were two equally divided sides in this battle. However, since 2013, the CDC has acknowledged that there are flaws with testing and even treatment.
Sadly, there seems to be a third party that has developed. It’s the medical community that continues to adhere to the outdated guidelines, often turning a blind eye to anything else, and it is their patients who suffer because of it.
There are available educational tools, workshops, and conferences for providers who want to know more about Lyme and other tickborne disease. But as for the patient, it really does matter whom they see. See someone who uses up-to-date protocols, who is deeply knowledgeable about these diseases, and who is heavily networked with other Lyme providers who can step in and consult when needed. By definition, these doctors are working in the best interests of the patient.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, the Maine partner of the national Lyme Disease Association and member of Maine CDC’s Vector-borne Disease Workgroup. Email her at firstname.lastname@example.org or go to mldse.org for more information.)