Almost anyone with chronic Lyme disease can attest, appointments with doctors who are not Lyme-literate can be extremely stressful. The CDC has yet to recognize chronic Lyme as a disease, and most doctors are not educated in the complexities of Lyme disease diagnosis and treatment.
The standard of care begins with an antibody test called the ELISA test. A more sensitive Western Blot test follows this if your ELISA test is positive. If both tests confirm antibodies to Lyme, a short course of oral antibiotics will be administered. If your symptoms persist beyond this, further Lyme disease treatment is not typically considered.
For various reasons, this procedure misses many cases of Lyme disease. Antibodies are not typically produced in the body until weeks after an infection. Conversely, if the immune system is weak, it may not produce antibodies at all. To complicate matters, the ELISA test seems less likely to detect Lyme in women than men. This may contribute to the fact that more men are treated for Lyme, whereas more women complain of chronic fatigue and fibromyalgia. (Many Lyme specialists recommend that Lyme be diagnosed clinically, to avoid over-reliance on flawed testing methods.)
This leaves many chronic Lyme disease patients at a loss for good care. Most of us have to step outside of conventional medicine and our insurance plans to find a Lyme specialist willing and able to treat us. Even with such a doctor, we still have to navigate conventional medicine for specialist evaluations and to take advantage of insurance coverage when possible.
Navigating conventional medicine
Within conventional medicine, we’ve all suffered the lecture: Chronic Lyme disease doesn’t exist. Our symptoms are most likely psychological. We are foolhardy to trust alternative medicine practitioners with our treatment. I once had an endocrinologist go on for five minutes listing her degrees and internships, then berate me for considering thyroid support prescribed by my Lyme specialist. Ultimately, we Lymies have enough going on without the shaming for medications we need to function.
How can we best use the conventional medical system to our advantage? How can we avoid the familiar experience of being condescended to, and skip ahead to the tests and treatment we need? When you must visit a doctor who is not Lyme-literate, use these tips to make your appointments efficient and useful.
1. Get the most from primary care physician appointments
Remember, your primary care doctor works for you. You employ her, not the other way around. It is worth interviewing several doctors before choosing one who is the best fit. If you can’t find someone Lyme-literate, you can at least try for someone you like.
Conventional primary care physicians are good for three things: running tests, referring to specialists, and prescribing drugs. This is their training and expertise. Unless you are really lucky, they won’t know much about diet, lifestyle, or alternative treatments. So, adjust your expectations, and do the appropriate research. List the symptoms you want help with and the specialists you would like to see. Research the tests you want and the drugs you would consider taking. Ask your doctor for more information about how each specialist or drug will help you, and make your own informed choices.
Initially, you may decide it’s more efficient to mention Lyme at your initial appointments judiciously. Or, take the advice of my Lyme specialist, and tell your doctor about your diagnosis only – avoiding saying “I have Lyme,” so your doctor can use her discretion in deciding what testing or treatment strategies may be right for you.
Track your Lyme disease symptoms, and bring notes to your primary care appointments. This may help validate your experience in your doctor’s eyes.
2. Getting the most from specialists
You may have more luck with specialists understanding Lyme disease than primary care physicians. Again, if you can, interview a few, and choose the best fit for you. Ask them about their experience with Lyme disease.
A good specialist will welcome you bringing in research and articles concerning the symptoms you want to be addressed. Whether or not you are discussing Lyme directly, bring articles supporting treatments you’d like to try or diagnoses you think fit your profile if they fall within the specialist’s realm.
3. Confronting sexism in medicine
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Unfortunately, doctors, even female doctors, still tend to minimize women’s symptoms. It may help to bring a friend along to your appointments to back you up. I hate to say it, but try bringing a male friend. Choose someone who knows your history and can corroborate your experience.
Hopefully, your doctor will not be sexist. But if he is, challenge remarks calmly. If you hear something like, “Maybe you should just join a book group to get your mind off your health problems,” or, “Maybe you should consider getting pregnant so you have something else to worry about,” (both real-life examples from friends of mine) try calmly asking your doctor if he would suggest the same if you were a man. Then switch doctors, and write a letter of complaint. The system changes through all of us speaking up.
4. Powerful self-advocacy
In essence, doctor’s visits should feel empowering and useful. It is our job to pick doctors who treat us with respect, who listen, and who offer us helpful treatments. It is our job to fire doctors who treat us badly and to complain to the hospital. This is how we shift the medical paradigm – the more obvious the demand for respectful medical treatment, the more supply.
So choose your health team wisely, put your two feet on the ground, and ask for the information and the guidance you need. Recruit advocates to help you out. Healing chronic Lyme is a long road and a world-class education in self-advocacy and care. The more you embrace this difficult gift, the easier the journey will be for those to come.
Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.
Choosing a Lyme Disease Test. Daniel Cameron MD website. http://danielcameronmd.com/lyme-diagnosis-tests/
Dusenbury M. Doing Harm. New York, NY: HarperOne. 2017.
Gender and Lyme: Is Tick-Borne Disease Different for Women? Global Lyme Alliance website. https://globallymealliance.org/is-lyme-disease-different-for-women/
Post-Treatment Lyme Disease Syndrome. Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/postlds/index.html
Schwarzwalder A, Schneider MF, Lydecker A, Aucott JN. Sex Differences in the Clinical and Serologic Presentation of Early Lyme Disease: Results From a Retrospective Review. Gender Medicine. 2010 Aug;7(4):320-9. doi: 10.1016/j.genm.2010.08.002
Testing. Global Lyme Alliance website. https://globallymealliance.org/about-lyme/diagnosis/testing/
Two-Step Laboratory Testing Process. Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/index.html