My title this week is a bit dramatic, but the topic is one of the most important ones I’ll probably ever share with all of you.
I was diagnosed with Lyme disease on August 20th 2001. I remember this date vividly because it was our first anniversary. Charley had made reservations at Basils, our favorite french restaurant. Instead of enjoying a romantic dinner, we found ourselves in the emergency room of South County Hospital. I’d been dealing with a high fever and severe headache that morning and when I tried to walk, my legs collapsed from under me. So, we spent our entire day and night holding hands together in the emergency room or as I affectionately refer to it, the “We’ll get to you some time in the next decade if you’re not dead yet” room. After midnight, someone finally examined me and ran tests. A doctor informed me I had tested positive for Lyme and Ehrlichiosis, confirming what I’d known for years. I had a tick borne spirochetal bacterial infection that was attacking my white blood cells. I was given a three-week prescription for Doxycycline and sent home at 2 AM.
The diagnosis was actually a relief because I’d been living with Lyme symptoms since the 1980’s after I’d moved across from a wild-life sanctuary full of deer, the official carriers of the ticks that cause Lyme. Sometimes, I’d be so tired, I would have to stop in parking lots on the way home from work to take naps. But the hardest part for me was the memory loss and the nominal aphasia that sporadically took away my vocabulary, at times leaving me mid-sentence with nowhere to go. For a talker like me, being at a loss for words is tough to take.
I’d learned to live with Lyme for twenty years. During that time, my own doctor was unable to get conclusive results on what was wrong. Fibromyalgia? Chronic Fatigue? Heart issues? MS? And on and on and on. I had researched it myself and kept telling her I had Lyme, but the tests were always negative. So, although the diagnosis in 2001 came as a relief, the battle waged on.
A few years after my diagnosis, a Lyme disease clinic opened at Rhode Island Hospital. It was only open on Tuesdays and took months of telephone calls and messages to get an appointment. It was Valentine’s day and Charley and I sat holding hands in the “We’ll get to you when we damn well feel like it” room for three hours until someone finally called me in to meet with a doctor. He was an immunologist, but it quickly became apparent that he knew little about Lyme. He was unable to read the tests and records I had brought with me. I asked a few questions. He was at a loss for answers. I explained I’d never had the tell-tale bullseye rash and had not been diagnosed until the disease was imbedded in my body and had become chronic. He balked at that and told me I must be getting bitten over and over again. He stated that there was no such thing as chronic Lyme. I insisted I had chronic Lyme which came on whenever my immune system was compromised. What we had was a failure to communicate and my patience was wearing thin. This was supposed to be a clinic specifically funded and created to deal with what was fast becoming an epidemic in our state and this doctor didn’t know his ass from his elbow about Lyme. I asked if they’d been compiling information on their patients. He seemed to think this was a novel idea that could be something they might consider doing it in the future. I looked at Charley, got up and said, “Enough! We’re outta here!”
A year later, during one particularly acute flare, I went to a local walk-in clinic for a blood test to be sent to my GP. The clinic’s physician, Dr. James Gloor, conferred with me on my symptoms and when I told him I had chronic Lyme, he concurred. He had Lyme himself and understood exactly what I had been trying to communicate to other physicians for years. Three weeks of Doxycycline was not going to kill the spirochetes lodged firmly in my body He put me on a longer regimen of a combination of 2 antibiotics. I felt much better after only a few days.
Dr. Gloor has helped me to function and be as healthy as I can with this chronic disease. He is also the physician who read Charley’s PSA and sent him for a biopsy after Charley’s own doctor of many years had missed the warning signs. This man has saved both of our lives. He’s gone against the tide to treat Lyme aggressively and has been brought to task for it.
Recently, a researcher at Johns Hopkins in Baltimore discovered that there are aggressive spirochetes which are not killed off by the standard three-week antibiotic treatment. Like aggressive cancer cells, they keep returning after a period of remission. This proves you do not have to be bitten again to get Lyme. It proves what many of us who live with this disease know all too well – chronic Lyme exists.
On Wednesday, I received an email from LymeDisease.org The heading read: Can you imagine a cure for Lyme disease? IMAGINE A WORLD where people with Lyme disease are diagnosed and treated correctly and go back to living their lives. Hope had entered the room. I filled out the survey, sent in my data and volunteered for clinical studies. Can you hear me roaring now?!
Please share this information. Someone out there is waiting for the good news. Thanks….Clare