I have been battling Lyme disease symptoms for 2.5 years but was only diagnosed six months ago. I felt better when I was on antibiotics, but once I finished them, I felt sick again. My doctor says it can’t still be Lyme because I took antibiotics. He wants to refer me to psychiatry. Could I still have Lyme?
Yes, absolutely! Lyme disease that goes undiagnosed for months or years spreads throughout the body and becomes a later stage of the disease that is much more difficult to treat. One round of antibiotics can suffice for an early case of Lyme disease, but most people with later stage cases need more antibiotics to adequately treat the infection. I personally went eight years before receiving a proper diagnosis, and needed almost a year of intravenous antibiotics. I then had a period of good health and went off antibiotics entirely, and then relapsed three months later. Low-dose oral antibiotics have since kept my symptoms at bay.
Research shows that ongoing infection may be one cause of persistent symptoms of Lyme disease. Other reasons may be inflammation, immune dysregulation and altered nerve pathways. In addition to adequately treating your infection, it’s important that your doctor consider these other possible causes of ongoing symptoms and treatment for them. I recommend seeing a Lyme Literate Medical Doctor (LLMD) who can figure out the best course of treatment for you. They can also evaluate whether you have other tick-borne diseases (co-infections) in addition to Lyme, which may require different treatment.
Psychiatric manifestations of Lyme disease are possible once the infection has crossed the blood-brain barrier into the central nervous system. Depression and anxiety are common symptoms of Lyme disease, but they are not the root cause. You may very well be suffering from depression and anxiety as a result of your illness, so seeing a psychiatrist to treat those conditions could be helpful. Treating mental health conditions will not, however, treat any underlying infections like Lyme disease.
Trust your body, find a new doctor, and know that help is out there!
I have been treated for Lyme disease for a while using herbs and antibiotics. My recent blood work shows I still have Lyme. Is the treatment not working?
Bloodwork cannot determine whether a person still has Lyme disease. Current Lyme disease testing only looks for antibodies against the bacteria, not the bacteria itself. Once you have Lyme, antibodies for it will always show up in your blood, and doctors won’t be able to determine if you are over an old infection, still fighting a current infection, or wrestling a new infection.
Rather than relying on blood work, your doctor should be evaluating your clinical symptoms. Have they improved over time? Have other biomarkers (i.e., for inflammation) improved? If so, your treatment is working. If not, it may be time to change your protocol. If you find it hard to chart improvement because recovery from Lyme disease is not linear, you might find it helpful to keep a daily log of your symptoms and look at them over a few weeks or months to see if there are patterns of improvement. You can create your own log or you might find it easier to download a template such as this Daily Symptom Diary from the Harvard Health Publishing Lyme Wellness Initiative.
I saw the cover for your book One Tick Stopped the Clock. When can I order a copy?
One Tick Stopped the Clock, a memoir about my journey with Lyme and other chronic illness, will be available for purchase on September 14, 2024. In the meantime, you can learn more about the book and find out about upcoming events on my newly upgraded website, www.jennifercrystal.com. There is a new page devoted entirely to my GLA columns, where you can peruse all backlogged blogs by topic, including other FAQs.
Stay tuned for ordering information in September, as well as GLA-related book events. Ten percent of book proceeds will go to GLA.
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