Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at firstname.lastname@example.org.
I have been on Lyme treatment for years. I’ve tried every antibiotic and I’m still sick. What can you recommend?
Lyme is a tricky, relapsing disease that can be difficult to treat, especially if it took a long time for you to be diagnosed and the infection crossed the blood-brain barrier. Since every case of Lyme disease is different and there is no set protocol, it can take some trial and error to find the “cocktail” of antibiotics that is right for your case. It may be that you haven’t hit on the right antibiotics yet, or that you need a different method of delivery (intravenous, intramuscular, or oral), or that you need to pulse antibiotics.
That said, with a good Lyme Literate Medical Doctor (LLMD) and the right cocktail, you should start to feel better eventually, especially if you’ve been on treatment for years. If that isn’t happening, I’m wondering if you’ve considered other factors. The first big question is whether you’ve been tested for other tick-borne diseases. Some of these infections, like babesiosis, require different treatment than Lyme, so if you’re only treating Lyme but you have another tick-borne disease, you’re only fighting half the battle.
The other factor to consider is what mechanism is causing your persistent Lyme symptoms. Researchers are exploring different options for why people have chronic Lyme. While persistent infection is one of them, inflammation, immune response, and changed neural pathways are others, and these factors may not be mutually exclusive. Talk with your LLMD about these different mechanisms and which may be at play in your specific case. If inflammation is a culprit, you may want to try an anti-inflammatory diet or your LLMD may prescribe an anti-inflammatory medication. If your immune system has been weakened by tick-borne illness, your doctor may recommend supplements to help boost its function. They may do imaging like a SPECT scan to see if your brain has physically been changed by Lyme disease, which can inform their treatment recommendations.
Finally, it’s important to consider whether something is going on in addition to tick-borne illness, and whether another condition may be hampering your body’s ability to heal. For example, I also had chronic active Epstein Barr virus, and had to treat that chronic condition along with my tick-borne illnesses Lyme, babesiosis, and ehrlichiosis. Your doctor should also look into other conditions like thyroid dysfunction or autoimmune diseases. When we have Lyme, it’s easy to get singularly focused on it, but it’s important to keep the big picture in mind.
I’m a long-term antibiotic protocol, but I’m having trouble determining how much “Herxing” to push through while trying to manage my daily life.
“Herxing,” or a Herxheimer reaction, is what happens when antibiotics kill the Lyme bacteria faster than your body can eliminate them. This toxic load can make the patient feel worse before better. Most people experience an increase of symptoms, and then wrestle with heavy nightsweats or frequent bathroom trips as their body tries to rid itself of dead bacteria. When you’re already feeling awful from the illness itself, a “Herx” can make you want to pull your hair out.
Herxheimer reactions are good because they mean the antibiotics are working, but there is only so much your body can take at once. How much that is depends on your individual situation. If you’re unable to take time off of work, or if you’re parenting young children, you may not realistically be able to endure multiple or long Herxes. This is also true if the symptom load becomes overwhelming. The best thing to do is to talk to your LLMD not just about what a Herx feels like for you, but about how it impacts your life. You can decide together what’s realistic for your body to endure, and for how long. You may decide it’s best to pulse antibiotics, to give your body a break. Or your doctor may decide to change up your antibiotics after a period of time. They also might recommend certain dietary or lifestyle changes to help your body detox.
Can you recommend a Lyme Literate Medical Doctor that treats the specific symptoms I’m dealing with?
A good LLMD should be well-versed in all symptoms of Lyme, understanding the physical, neurological, and emotional impact of the disease. However, many do have specialties based on their pre-Lyme training. For example, an LLMD who is a psychiatrist by training is naturally going to know more about the diagnosis and treatment of psychiatric manifestations of Lyme, while a neurologist will be more focused on neurological symptoms. Therefore, the answer to this question may lie in which symptoms are most affecting you. It might be that your LLMD is an internist who can recommend specialists to help with specific symptoms. You can find a good LLMD in your area through GLA’s Find a Lyme Specialist Program.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.