*This is my letter for the 1,000 Letters Lyme Campaign. Additional letters (legislation, other campaigns, etc.) of mine are in separate tabs, nested under this one, and letters from others are also posted on this blog as blog posts, linked to under the 1,000 Letters Lyme tabs.
To Whom it May Concern ~
I am a professional federal biologist who contracted Lyme disease through a tick bite in the course of my fieldwork in Montana in 2010. Despite several acute symptoms and the onset of Bell’s palsy within weeks of the tick bite, I was told with absolute certainty by local doctors that it could not possibly be Lyme disease because “we do not have Lyme disease in Montana.”
I was misdiagnosed with Chronic Fatigue Syndrome for three years. During this time I became entangled in federal employment loopholes and nearly forced into disability. I was able to regain my job through a year-and-a-half-long formal, federal discrimination process.
After returning to work, I was finally able to travel out of state for adequate Lyme disease testing and treatment. Despite having untreated Lyme disease for 3.5 years, I responded very well to antibiotics over the course of several months, experiencing significant reductions in symptoms and increases in physical and cognitive stamina.
As a biologist, I struggle enormously with the lack of credibility I’ve seen presented and adhered to by the IDSA and the CDC, and cannot believe the degree to which best available current science is disregarded in the diagnosis and treatment of Lyme. Best available science leads to adequate treatment and diagnosis practices. Regulators, physicians, and patients need to demand scientific integrity and accountability.
Patients don’t have to lose their ability to function as people, parents, or productive members of society. Doctors need the education and procedural freedom to properly diagnose and treat patients, understanding that:
- Two-tiered testing is missing too many cases of Lyme disease to be considered reliable for diagnostically excluding the presence of Lyme;
- Lyme disease is a clinical diagnosis—laboratory testing is only one piece, and “CDC positive” is not a reasonable “end-all” for interpretation of results;
- Assumptions about deer tick distribution are not adequate for delineating Lyme occurrence or probability of occurrence because:
- Multiple species of ticks can transmit Lyme disease to humans (as recently confirmed by recent studies)
- Geographic distributions of tick species and populations are not adequately known
- Distributions of many species that carry ticks are being altered by climate change, as are migratory routes and patterns of migratory wildlife that carry ticks
- Symptoms appearing to be psychological or emotional in nature are very typical of Lyme disease symptoms and should be treated as the physiological symptoms that they are, rather than leading to discounting a patient’s illness;
- Many or even most Lyme disease patients do not exhibit or do not notice a rash (mine was on my scalp and very easily initially missed);
- Transmission from tick to human can occur much more quickly than folklore suggests, so that relatively short duration does not negate the potential for Lyme transmission from an embedded tick
- Not all patients recall being bitten—for those who do remember, even scientists may not correctly identify the tick species that bit them.
My acute symptoms arose following a tick bite that occurred in Montana, but I was misdiagnosed based on the assumption that we don’t have the right ticks here (even though multiple species can transmit Lyme, and tick distributions here are not known with that level of specificity or certainty).
I’ve lost my ability to do my job and my ability to be the parent or the person that I was before. After my long fight to avoid disability, I have experienced a relapse in symptoms and am struggling to regain my ability to work and to function as an active 38-year-old mother of two. I miss the life and career I loved, the activities I once enjoyed with my kids and my Girl Scout troop, and my ability to run and hike and physically enjoy life.
You are in a position to help other patients regain their lives through timely diagnosis and treatment. Please consider this information for the sake of these patients. They should not lose their lives to a battle fueled by political and financial reasons that are not supported by anecdotal or scientific evidence.
Please help us change Lyme disease guidelines and outcomes.
Thank you for reading this through,
38 years old, Mother of 2
Columbia Falls, Montana