How to Work with a Doctor Who’s Not Lyme Literate
by Dr. Bill Rawls
Though the prevalence of Lyme disease is rapidly growing, it remains a lesser known and widely misunderstood disease compared to more commonly seen conditions like cancer and heart disease. So it makes sense that it might take certain circumstances to pave the way for a medical professional to take an interest in treating Lyme disease, especially when symptoms move from being an acute infection to a chronic illness.
In many such cases, doctors who have expertise in Lyme — known as Lyme-literate medical doctors (LLMDS) — have a personal history with the illness, have seen family members or friends try to navigate the complexities of tick-borne infections, or have a medical practice in endemic areas. Typically, you can find an LLMD through online support groups, websites like the International Lyme and Associated Diseases Society (ILADS), or via word-of-mouth referrals.
Take, for example, Dr. Bill Rawls, Medical Director of RawlsMD. He had a busy practice in obstetrics and gynecology, and his hectic schedule wreaked havoc on his sleep, eating habits, and stress levels. In his late 40s, he began experiencing persistent flu-like symptoms, and for a long time, neither he nor other physicians were able to pinpoint a cause.
Eventually, Dr. Rawls was diagnosed with Lyme disease, but successful treatment remained elusive. He reached a point where he had to take healing into his own hands if he was going to experience lasting relief from symptoms like insomnia, fatigue, brain fog, and joint pain. Out of his personal recovery journey, his passion for herbal therapyand affordable treatment options for patients was birthed, and now, he seeks to help others understand this complex illness.
Maybe not so surprising, then, is the fact that the average healthcare provider (family practice or internal medicine) at your local clinic probably doesn’t have the same personal Lyme experience, knowledge base, or time to dive into the complicated world of tick-borne diseases. With that said, there are certainly times when you might need a primary care provider (PCP) or a specialist to address issues that aren’t necessarily caused by Lyme.
If you find yourself in that situation, first keep in mind that most standard doctor’s appointments are only 15 minutes long, and optimizing your time together can be challenging — but not impossible! Below, we’ve highlighted some helpful and time-saving tips for you. Plus, you’ll find a handy printer-friendly one-sheet on Lyme basics that you can give to your doctor so that they can learn more about the disease.
After all, with incidences of Lyme on the rise, your doctor is likely to come in contact with more people who’ve contracted the illness, so working with you as a patient could benefit others like you in the future.
Before for Your Appointment
The night before an appointment with a new doctor can be a bit nerve-wracking, especially when chronic Lyme disease or other misunderstood illnesses like POTS, chronic fatigue syndrome (ME/CFS), or mast cell activation syndrome (MCAS) are part of your medical history. But by doing a little prep work beforehand, you can help things move more efficiently in a healthcare system that’s not designed to allow physicians to spend a lot of time with patients.
Obtain a Copy of Your Medical Records.
A new doctor may want to see a copy of your previous medical records either ahead of your scheduled visit or during it. You can expedite the time it takes to gather your medical information by obtaining a copy of your most recent tests, lab results, and treatment plans. In most cases, records from the last 12 to 15 months will be the most useful to a new doctor.
Bear in mind that a non-Lyme doctor probably won’t be familiar with routine Lyme tests like IGenex or mold markers. However, they will be able to see what other tests you’ve had done, and what the members of your healthcare team are doing to treat you.
Prepare Your List of Questions.
Do you ever feel like your mind goes blank during your doctor’s appointment, or you’re unable to recall all of your primary concerns were? It happens to the best of us, and then once you leave the provider’s office, it can be difficult to know how to directly reach the doctor again should the questions resurface (or new ones arise).
Rather than test your memory, take a few minutes the night before your appointment to think about the most pressing issues you have with your health. For instance, do you need a referral to a pain management specialist, neurologist, or cardiologist?
Whatever the case may be, grab a notepad or your phone and record questions or concerns that come to mind. This way, you won’t have to try to remember the important details you would like to discuss with a doctor while you’re under a time crunch.
Line Up a Friend or Family Member to Come with You.
Most of us are no stranger to the debilitating symptoms of chronic illness, and we know that many of the symptoms we endure are invisible. Things like pain, fatigue, or food intolerances can go unnoticed by a new physician on your medical team, which can leave you feeling disbelieved or unheard.
In those circumstances, where your pain and discomfort remain unseen, it can help to bring a trusted friend or family member with you to your appointment. That way, you have someone both on and by your side who can confirm and validate your experiences, and fill in the timeline of events in areas where you may have forgotten. Additionally, your friend or family member can assist by taking notes during the appointment to help you recall what the doctor said — a process that could be impaired if you have a high degree of pain, sleep disturbances, brain fog, or other symptoms that impact cognitive function.
During Your Appointment
If you walk into an appointment expecting more than your doctor is capable of doing, you’ll undoubtedly walk out feeling discouraged.
“One of the primary reasons a patient leaves an office visit frustrated is because they have an unrealistic view of the type of care the modern medical system is designed to provide,” says Dr. Rawls. It’s structured in such a way to facilitate acute medical care, he explains, which typically involves prescription medications or surgical interventions.
As such, when it comes to addressing chronic health conditions, the options most healthcare providers have to offer you are (no surprise) drugs and surgery — which likely won’t resolve the underlying cause of the illness, but it might help you find some symptom relief in the interim. So don’t discount their recommendations outright, and keep the following in mind to make your appointment as productive as possible.
There’s a good chance you’ll know more about your chronic illness than your doctor does, especially when it comes to nuanced conditions like Lyme disease and coinfections like Babesia and Bartonella. But Dr. Rawls advises against trying to best your healthcare provider with your knowledge, as that rarely leads to a productive outcome.
Instead, provide your doctor with a basic overview of what you’ve been going through, and offer to give them additional information or websites if they would like to do further research. You might discover that your doctor is willing to listen and support you on your road to recovery, even if they don’t fully understand Lyme disease.
Be Specific About Your Concerns.
Because the average amount of time you’ll have with your healthcare provider is 15 minutes, you won’t be able to address every issue that’s bothering you during one appointment. Rather than trying to touch on several things superficially, pick the top one or two concerns to address in more detail. Even then, understand that the best tools your doctor has to offer you include medication or a procedure.
As a personal example, I recently went to my PCP with the understanding that she doesn’t know much about Lyme disease, though she admits it can be complicated to treat. I already had a doctor who managed my Lyme protocol, so I didn’t need her to have a high degree of knowledge regarding tick-borne diseases — I simply needed her not to dismiss them.
Also, my complaint wasn’t necessary Lyme-related; I was having some pain in the area of my gallbladder, and I wanted to see if I had developed an acute condition such as gallstones. She listened to my concerns and ordered a kidney ultrasound for the next day. My tests came back normal, and the pain more or less resolved on its own after a few months. Still, I was grateful for the peace of mind the procedure gave me to ensure there was nothing wrong with my gallbladder.
If you have several areas or symptoms to discuss, be mindful of the fact that you may need to make a few follow-up appointments with your doctor to have adequate time to address your concerns.
Wrap Up the Appointment with Your Final Questions.
As your appointment comes to a close, take one last glance at your notes to see if your top areas of concern have been addressed, and whether your questions have been answered. If not, take a few moments to inquire about the remaining problems. If you have several more areas or symptoms to discuss, make a few follow-up appointments with your doctor to adequately address your concerns.
You can also ask the doctor or nursing staff how best to communicate once you leave the appointment. Nowadays, many hospitals and clinics have an email system where patients and physicians can more easily correspond with each other.
After Your Appointment
Once you leave the doctor’s appointment, feel free to take some time to research the medication, referrals, or procedure they’ve prescribed to you before you move forward with filling a prescription or scheduling the next steps. You can also ask questions regarding medication interactions with your pharmacist.
Ultimately, the decision to add a new member to your healthcare team is yours. Although many doctors and specialists might not have expertise when it comes to Lyme disease, you need one who listens to you and doesn’t cast aside the idea of Lyme disease. If a healthcare provider is unable to establish this type of rapport with you, maybe it’s time to fire your doctor and find a new one.
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