What Makes a Doctor Lyme Literate?
One of the most common pieces of advice for Lyme patients is to find a Lyme-literate doctor (LLMD) who can give an accurate Lyme disease diagnosis and provide the appropriate care. But what does that actually mean? What makes a doctor Lyme literate?
A quick Google search makes this question seem harder to answer than it really is. This blog intends to clear up misconceptions about what a Lyme-literate doctor is and isn’t so that you can find the quality care you need.
But first – who needs a Lyme literate doctor?
In an ideal world, a Lyme disease diagnosis would be straightforward for any physician. You would notice symptoms soon after a tick bite and immediately make a doctor’s appointment. Your doctor would note your symptoms and give you a blood test. The test would come up positive, showing the disease in your system. Your doctor would then prescribe antibiotics, and your disease would clear up completely.
Unfortunately, for many people, resolving a case of Lyme disease is not so simple. In fact, just getting the right diagnosis in the first place can be a challenge. Problems with the currently recommended diagnostic testing, plus the challenging nature of identifying Lyme disease symptoms – which are often non-specific or similar to those of other diseases, especially the farther along the infection is – all make getting a Lyme disease diagnosis and treatment difficult for many patients.
Some people seek out Lyme-literate doctors after years of receiving inaccurate or unhelpful diagnoses and treatments that don’t make their symptoms go away. These may be patients with late stage Lyme, chronic Lyme, or even Post-Treatment Lyme Disease Syndrome (PTLDS). Others know they are at risk of Lyme disease – for example, if they found a tick on them – and seek out a Lyme-literate doctor who they know will be able to accurately interpret their symptoms and test results.
In other words, patients who aren’t able to get the answers or relief they need from other specialists often seek out the care of a Lyme-literate doctor.
Now, what actually makes a doctor Lyme literate? There are a few skills, qualifications, and characteristics you should look for.
A Lyme literate doctor:
…is familiar with the vast range of signs and symptoms that may indicate Lyme disease at various stages.
Lyme disease is one of the trickiest infectious diseases to diagnose. One reason for this is its non-specific symptoms that mimic those of other diseases, such as:
Fever and chills
Fatigue or shortness of breath (especially in later stages)
Heart arrhythmia (especially at later stages)
Misconceptions about what Lyme looks like can complicate the diagnostic process for physicians who don’t have sufficient experience with Lyme. For example, many people believe you can’t have Lyme disease if you don’t have the characteristic bull’s eye rash (erythema migrans). However, the Centers for Disease Control and Prevention note that this rash only shows up in 70-80% of patients. Dismissing a patient because they don’t have the rash can lead to missed or misdiagnosis.
LLMDs have become experts in Lyme disease based on years of experience working with Lyme patients. Many are not infectious disease doctors, but come from a range of backgrounds. By working closely with and treating Lyme patients over the years, they learn to recognize the tricky signs and symptoms of the disease. Some even use that expertise to train other LLMDs.
…is familiar with the coinfections that may be present with Lyme.
Lyme disease is only one of many tick-borne diseases active in the U.S. Many of these diseases crop up as coinfections of Lyme, which can interfere with the diagnostic process and treatment if the proper tests aren’t used or interpreted correctly. A Lyme-literate doctor would be prepared for these challenges.
…may be listed on one of the Lyme-literate doctor directories.
There are several resources at your disposal that can connect you with doctors who can recognize and treat Lyme disease. These directories include medical professionals who are members of organizations dedicated to fighting Lyme, including:
International Lyme And Associated Disease Society (ILADS) – Doctor Search
LymeDisease.org – Find Lyme-Literate Doctors
Global Lyme Alliance – Find a Lyme-Literate Medical Professional
Lyme Disease Foundation – Doctor Referral
Note: Some of these organizations may require you to submit a form or create a login to access their databases.
In addition, you may also want to explore organizations and support groups that can connect you with other patients in the Lyme community, such as:
Lyme Disease Foundation – Find State Support Groups
Lyme Disease Foundation – Support Groups
Daily Strength – Rocky Mountain Spotted Fever Support Group
What is Lyme Disease – Website and Support Groups by State
…has positive reviews or testimonials from other Lyme patients.
It’s important to do plenty of research to make sure you’re finding the right fit before spending precious time and money on diagnostics and treatment. Get as much information as you can about any doctor you’re considering by reading reviews or testimonials from other patients. If possible, get word-of-mouth or doctor
More at this link: https://igenex.com/tick-talk/what-makes-a-doctor-lyme-literate/
Dear RM Agents and Readers,
The right doctor can show you the way, the right doctor will listen to where you have already been and where you want to be and help guide you, much is then up to the individual.