This is another patient’s letter from the 1,000 Letters Lyme Campaign, posted with permission.
See also Heather’s Letter, My Letter, or visit the group on facebook (The 1,000 Letters Lyme Campaign) to request membership (you can participate without being on facebook). More stories will be published over time, but these are just a few examples of the hundreds of letters being written by patients to educate doctors, politicians, and the media, and to raise awareness via additional venues in the future.
This effort has been painstakingly coordinated by a Lyme patient named Sheila, who has also edited many letters and some of my articles outside of this campaign (one of the publicly available articles available on Hub Pages on my profile, here). She has a few helpers, but all are patients, so this has been quite a task, with the group now having grown beyond 800 members and still climbing. Whether or not you participate in this campaign, consider having a letter ready for representatives so that you are ready when legislation is proposed in your state or up for consideration federally. A current example is House Resolution 4701, which you can read more about here or on Lymedisease.org.
I am writing to you today because I have late-stage (chronic) Lyme disease and I want to tell you about my experience and how this debilitating illness has changed my life. I have faith that you will read this letter in its entirety with a compassionate heart and an open mind.
I am a 51-year-old woman currently on disability. I have been forced to hire caregivers and a house cleaner since I am no longer able to care for or look after myself. I am living off of my retirement, which is rapidly diminishing. I’m in the process of downsizing and selling my current home to free up cash to pay for the astronomical medical bills that insurance won’t cover because of my diagnosis. I weigh less than 100 pounds. I’m on a limited diet and can only eat food that is first pureed in a blender. My days are spent managing my pain. When I’m not lying down I try to do as much stretching and self-massage as my body can handle. I occupy my time with meditation and prayer. On a good day I may listen to some music or a podcast, or I may feel up to doing some light reading. If I feel extra energetic I may possibly call a friend or family member. None of this is easy as the discomfort is constant and all consuming. Even though I love to exercise and to be outside, walking for any length of time is very difficult due to the pain and fatigue. Writing this letter is taking a huge amount of effort.
I used to lead a very productive life. I worked full time for the same company for 12 years. In addition to working, I had a small side import business that was my passion. I was a world traveler and an avid bike rider who enjoyed the camaraderie of 100-mile bike rides with fellow cyclists. I had a wonderful social life and was very close to my family. This all changed approximately seven years ago when my health started declining in 2008 after undergoing two surgeries in which I was told by my doctors that I had an excellent chance of making a full recovery. Unfortunately, my health only worsened. Because of my current weakened condition I am no longer able to attend family graduations, birthdays, or any type of social gathering. Many holidays are spent alone.
When my health deteriorated after the surgeries, I tried desperately to figure out why I remained so sick. After countless diagnoses and multiple doctor visits, one of which included a trip to the Mayo clinic in Rochester, MN, I was finally diagnosed with Acute Lyme disease in October of 2013 by an Infectious Disease doctor. At the time, I was struggling with a sphenoid sinus infection. In addition to the infection, my complaints included chronic joint pain, numbness, burning, headache, bone-crushing fatigue, cognitive and memory problems, twitching, food allergies, and GI issues. These symptoms had progressed and only worsened over the years. The doctor who was treating me ran a battery of tests. Everything came back negative except for the ELISA and Western Blot Lyme tests, both of which were IgM positive. The doctor seemed baffled by the results and asked if I had been out hiking in the woods lately. I chuckled and reminded him that I had been unable to work for three years due to my ill health, was currently on disability and was so sick at times I could barely climb the stairs in my condo. Even though he suspected that the Lyme tests were false positives, he had no choice but to treat me for Acute Lyme. He treated me with a short ten-day course of antibiotics. This in itself was the wrong protocol to treat Acute Lyme. According to the CDC, a 30 day round of oral antibiotics is the accepted method to treat this infection. Because my gut was so compromised from the numerous oral antibiotics that my ENT had put me on in the past for multiple sinus infections, the antibiotics to treat the Lyme were given intravenously. Insurance called the therapy “investigative” and didn’t pay for the IV treatment, even though the Infectious Disease doctor who was treating me wrote them a letter stating that it was medically necessary.
After the Lyme diagnosis, I started doing some research on the disease. I had been tested several times before by numerous doctors, but results were negative so treatment was never discussed nor pursued. I knew nothing about the disease and certainly hadn’t heard of chronic Lyme. I read that a person could get bitten, and years later after experiencing a traumatic or stressful event such as surgery, develop symptoms. My ongoing health issues began to finally make sense. A family member reminded me of the time, 25 years ago, when I came home after a day of mountain biking in the woods of St Louis to find a cluster of tiny ticks embedded on my left ankle. I didn’t get sick from these ticks, nor did a bull’s-eye rash appear, so I never gave it a second thought. I just picked the ticks off. I later developed, what appeared to be, hives in that area. My ankle itched so badly I nearly scratched it off. This continued on and off for approximately six months and was extremely uncomfortable and painful.
I am telling you this because I am pleading with you to PLEASE look further into the chronic Lyme epidemic and the complications that it is causing so many people like myself. Research and knowledge is imperative. Contrary to what the CDC and IDSA believe, Lyme is found in all 50 states. Animals that carry the disease travel and are constantly on the move. And did you know that the shape of the Borrelia burgdorferi spirochete is such that it can very easily move around in the body and hide, especially when it is feeling threatened? Its corkscrew shape and tail enable it to swim anywhere. It can hide behind biofilm and drill into tissue, bone, and organs. It will flee anywhere to safety. It can easily leave the bloodstream and escape detection. I believe this is why the disease is so difficult to treat, why tests often come back negative, and why chronic Lyme is so controversial in the medical community, despite the many peer-reviewed studies illustrating its existence.
Furthermore, I don’t understand why this horrific, debilitating disease is not covered by insurance. So many horribly sick people like myself are not only fighting for their lives but are going broke doing so. Is coverage not available because there are no standard tests to diagnose Lyme disease, and the tests that we do have are so unreliable? This makes absolutely no sense. There are many illnesses that lack diagnostic testing and procedures for identification. Diagnosis is based on symptoms alone. ALS, Multiple Sclerosis, and Fibromyalgia are three good examples. All three of these diseases are recognized as legitimate illnesses, are covered by insurance companies, and have doctors and “experts” who specialize in these conditions. Why should chronic Lyme be any different??
I am beseeching you to please take it upon yourself to become more involved and to look further into this debilitating illness. http://www.ilads.org is a good place to start. It has a plethora of information on treating Lyme disease. http://www.lymedisease.org is another great resource, as is http://www.lymedmd.org.
If more doctors get involved in the fight against chronic Lyme disease, research will improve and desperately needed funding will increase. Doctors who currently treat chronic Lyme will not be afraid to practice for fear of losing their license, and treatment will be accepted and paid for by insurance companies. Most importantly, people will get better and lives will be saved. Please help us. It is up to you.
Thank you most sincerely for taking the time to read this letter.