For now, you can read more about this week’s IDSA Headquarters Rally in Arlington here and about our objectives there here. There are multiple ways to be represented there (or have been, as time is rather short now) if you cannot attend, including:
- The StandingUpWithUs campaign (requesting that shoes be sent to IDSA’s Headquarters),
- The Lymewire via #EveryOneCounts, and
- Letters to Strangers via the 1,000 Letters Lyme Campaign.
The following is my letter, adapted from my 1,000 Letters Lyme Campaign letter. The intent is to distribute anonymous letters, but my letter has already been published on Invisibly Lyme Montana, and similarities could be deduced if someone were so inclined.
If you choose to share your story here, your anonymous letter from Arlington here, or your 1,000 Letters Lyme Campaign letter here, your name will be used, partially used, or not used depending on your preference. You state is desired at a minimum, and in general for the anonymous letters, first name, state, and age were used.
Dear Stranger Walking Down the Street,
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 (a Lyme symptom) 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. I know many other Lyme disease patients, however, who have not been so lucky. Some of them have been on antibiotics for a couple of years, and each time they try to come off, their symptoms creep back, as was eventually the case for me as well.
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. There is a large body of peer-reviewed evidence that is being ignored by the IDSA and CDC, which is an outrage! 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. The guidelines for the treatment and diagnosis of Lyme disease need to change, and 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 of the puzzle, 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
- 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) and fewer than 50% of Lyme patients recall being bitten by a tick;
- 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
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 39-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 need to know that the CDC stated in 2013 that there are now 300,000 new cases of Lyme disease in the United States each and every year, making it the fastest-growing infectious disease in the country! You are more likely to contract Lyme disease than you are breast cancer, colon cancer, prostate cancer, MS, HIV, ALS, West Nile Virus, Ebola and lots of other conditions. Yet Lyme disease receives almost zero funding and the very doctors who are supposed to be diagnosing and treating us are relying on outdated statistics and guidelines. People are losing their lives (yes, Lyme can be fatal) to a battle fueled by political and financial reasons that are neither supported by anecdotal or scientific evidence. Please learn what you can about Lyme disease and its co-infections so that you can protect yourself and your loved ones. A great resource is ILADS.org. Also, look for the award-winning documentary Under Our Skin: The Untold Story of Lyme Disease. It’s free on YouTube and you’ll learn so much!
Thank you for reading my letter,
P.S. Please consider participating in the Take a Bite Out of Lyme Disease challenge. You can find the details at LymeDiseaseChallenge.org, but in a nutshell, you simply record yourself stating a fact about Lyme disease (found on the challenge state), biting into a lime and then nominating three others to follow suit. Nominees are also supposed to donate $10 to at ILADS.org, but I don’t know your financial situation so I will not ask you to donate. What’s important to me is spreading awareness about this horrendous disease. If you do take the challenge—and I sure hope you do!—you can say that Angela from Montana nominated you in letter you got from the Mayday Project. How cool would it be if I found your video!