Persistent Lyme, long COVID, and patient-led research
Carolyn Degnan delivered the following public comment to the federal Tick-Borne Disease Working Group on April 27, 2022.
Good morning. I am the Chief Operating Officer of LymeDisease.org. I also have two daughters with long term Lyme disease. One has been sick since 2002 and is totally disabled. The second one still has some residual effects of the disease but has been able to go on and become a practicing Naturopathic Medical Doctor in the San Francisco Bay area.
I too contracted Lyme and an unknown species of Rickettsia on a trip to Tanzania in 2012. Fast forward to 2020 —I was one of the early people to contract COVID-19 in the Bay Area before testing was widely available. I went on to develop what is being called “long-haul COVID.”
There are many similarities between COVID and Lyme and associated tick-borne diseases. Just to name a few:
- Both can cause long term/chronic illness
- Both involve multiple systems in the body and can be hard to treat
- In both cases, research projects organized by patients have led the way, stepping in when the current medical system failed to do so. For COVID, there is the Survival Corps research and for Lyme we have LymeDisease.org’s patient registry, MyLymeData.
- And lastly patients of either disease have a hard time finding practitioners who can knowledgeably treat them.
Yesterday morning on a national network news program, Dr. Natalie Azar was speaking about long haul COVID. She stated that if someone suspects they have long-haul COVID (I quote) ”they need to find a provider who believes them and validates their symptoms” (end quote). How ironic–that is exactly what every Lyme patient faces.
Our medical institutions aren’t treating Lyme and other tick-borne diseases seriously enough. We need to invest in rapid tests. We need to educate frontline medical people on the symptoms of Lyme and other tick-borne infections. We need insurance to pay for treatments. We need to be more aggressive about treating up front, because if you let tick-borne diseases linger, they ruin lives, destroy families.
I can only wonder what kind of life my daughter would be living today if at least one of the 15 doctors and top medical institutions she saw in the SF Bay area had been able to recognize and diagnose her with Lyme disease when she first got sick 20 years ago.
We constantly hear that Lyme is too expensive to treat. My daughter will probably be on Social Security Disability the rest of her life. No one is factoring the cost of her disability which could be as low as $540,000 and will probably go much higher by the time she reaches 65.
If you believe the CDC’’s estimated number of yearly cases to be 476,000—-6 out of 10 cases could go on to develop chronic symptoms, you are looking at a huge financial burden that our society cannot afford to carry. Thank you.
Carolyn Degnan, COO of LymeDisease.org, has been involved in Lyme advocacy for 20 years. Email her at email@example.com.