This is another patient’s letter from the 1,000 Letters Lyme Campaign, posted with permission.
See also Kristine’s Letter, Heather’s Letter, My Letter, the 1,000 Letters tab under ‘On-going Campaigns’ or find 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. 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.
Debby Jo’s Letter
*Printed with permission.
In June of 2008, I found a tick under my left breast. I of course removed it, but nevertheless immediately developed a dime-sized bull’s-eye rash. Within twenty-four hours my rash had grown to the size of a turkey platter and I became very ill with flu-like symptoms. This happened over the course of a weekend. I called my primary care physician on Monday morning and was able to get in to see her right away. She was shocked at the size of my rash. She ran no tests; she simply started me on a 30-day course of doxycycline. I took the entire course, but instead of feeling better I actually felt worse. I returned to my PCP who said I should be cured of the Lyme. She reluctantly gave me another 30-day script for doxycycline. I again finished the entire course, and still felt no better. She then said she could not give me any more antibiotics and that I had Fibromyalgia. She didn’t conduct a single test to make this determination.
Over the next five years, I went to two infectious disease doctors and four general practitioners but received no help. Most did not even test me, but for the few who did my tests came back negative, so they said I did not have Lyme. In the meantime, my health continued deteriorating. I had to give up the career I loved—running a Bed and Breakfast and planning weddings. I also left my husband of 40 years for a short period—I now know the Lyme made my thinking crazy—thank goodness we are still together. Then in March of 2013 I landed in the ER because my entire body was in pain and I was running a high temperature. The ER doctor said he was admitting me for a UTI. I thought, “No one gets admitted for a UTI.” My husband asked the doctor about it, who explained that he had to put something down to admit me but that the true story was that I had an unidentifiable infection in my blood and needed to be put in isolation.
The next day another doctor came to my room and spoke with me. I told him that I believed I had Lyme. He admitted he knew nothing about Lyme and said he’d bring in an infectious disease doctor he knew who treated Lyme patients. The next day at 2 am the infectious disease doctor walked in. We had a twenty-minute conversation and she said, “You have Lyme disease!” She ordered a battery of tests, one of them being an MRI of my brain and another being a lower lumbar puncture. The MRI came back showing lesions on my brain and the lumbar puncture also revealed that the Lyme bacteria had spread to my central nervous system. The ID doctor said, “Lyme has disseminated throughout your entire body. You’re now dealing with Chronic Lyme disease, Chronic Pain and Chronic Fatigue Syndrome.” She was upset that so many other doctors had failed me. I was immediately started on several daily antibiotics through a PICC line for the next 18 weeks. I had to stop only because my insurance would no longer cover the infusions. I was then put on oral antibiotics for the remainder of 2013. In January 2014, the rules of the healthcare system dictated that my doctor would lose her license if she prescribed even one more antibiotic, so she had no choice but to stop my treatment. She told me that if I’d been given aggressive treatment at the time of my tick bite, I wouldn’t be as ill as I am today. She said it angers her to see cases like mine on a daily basis and that the medical field needs to start taking tick-borne illness seriously! She wanted to show each doctor my medical records so they could see what they allowed to happen.
I have been struggling on my own ever since. I’ve been on a waiting list to see an LLMD (Lyme Literate MD) for sometime now; he’s in such high demand that the earliest he can see me is 2015. I will need $1,600 to walk through his door since he takes no insurance, but he is the best and has helped many very sick people recover their lives.
Today is October 23rd and I am on the couch suffering from severe tremors/shakes. I now use a walker and I can barely feed myself or type this. My mind is usually not clear enough to write a letter like this—it has taken me many weeks to do so. I still have so many symptoms that it would take pages to list them. Life as I knew it is gone, and because I’ve lived with this sickness for so long, I now suffer from depression and anxiety/panic disorders. I feel helpless; however, I do not feel hopeless.
I’m imploring you and all medical practitioners to acknowledge that there is such a thing as Lyme disease and that it can spread throughout the body and become chronic. It is a slow-growing bacterial infection, just as TB and many others are. TB is treated with a minimum of 6 months of antibiotics. And if someone is still sick afterward, treatment is continued. Why would Lyme be any different? Instead of dismissing those who go to you sick and in search of help, why not take the time to learn how to properly diagnose and treat the disease? I was one of fewer than 50% who was lucky enough to find her tick. I was also lucky enough to develop the bull’s-eye rash—many people do not develop a rash of any kind. But even with these clear signs and even though I still had symptoms after 60 days of doxycycline, my doctor refused to accept that I could still be sick with this slow-growing bacterial infection. All the doctors I saw for the next five years also refused to believe that I could have Lyme because my tests were negative. But the CDC expects physicians to make clinical diagnoses and says that the tests are supposed to be used only to rule in Lyme disease, never to rule out Lyme disease. In 2013, the CDC also stated that only 30,000 of the estimated 300,000 new cases of Lyme disease in the US are being reported each year. That means at least 270,000 cases of Lyme disease are likely being left undiagnosed and untreated, and by their own statement unreported! This is shocking! Physician across the nation are failing their patients. In my case, it was sheer luck that I crossed paths with an infectious disease doctor who actually cares enough to do her homework. But in our broken system, she was unable to continue treating me and to this day I suffer greatly.
Please do not take this topic lightly. In doing so you dismiss the wellbeing of your patients and the very lives of so many others. Please remember your Hippocratic oath—“first, do no harm”—and then take the time to read the peer-reviewed studies proving chronic Lyme disease exists. Take the time to read the New York Times bestseller Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease. Consider the physician training program that the International Lyme and Associated Diseases Society (ILADS) offers; it will count toward your continuing education hours. At the very least, watch the award-winning documentary Under Our Skin: the Untold Story of Lyme Disease. It’s free on YouTube. Above all, please listen to your patients.
Thank you for taking your precious time to read this letter.
Debby Jo Beers