Here is a piece I recently wrote for the website “Humantology” that explains very well who I am, my relationship to Lyme Disease and my message of hope to those with the disease. You can also read it here:
In August 2007, a week after I finished running the 10th Anniversary of the Beach to Beacon 10K road race, I started to experience the first symptoms of Lyme disease, a swollen right knee and mild joint aches. As weeks went by, I experienced more Lyme related symptoms: muscle aches, migraines, nausea, fatigue and general lethargy. I did not know anything about Lyme disease, so I made no connection between my symptoms and the disease. In October 2007, 3 months after the onset of the initial symptoms, a bulls-eye rash appeared on my upper arm. I showed my mother who did know about Lyme and she suggested I see my primary care physician immediately. My PCP sent me to an infectious disease specialist who diagnosed me with Lyme disease. He gave me 3 weeks of doxycycline (standard CDC treatment) and told me I’d be fine.
Three weeks later I was anything but fine. I could no longer turn my head, lift my arms up over my head, dress myself, climb stairs unassisted, get in and out of bed unassisted, roll over in bed unassisted, look after my two small children, or carry on anything resembling the normal life I had lived. The pain in my joints was overwhelming. Living meant dealing with the pain on a minute-by-minute basis to try to make it through the day. Most days this meant lying on the couch until someone came home to help me. It was a real struggle. I phoned the infectious disease specialist telling him I thought I needed more antibiotics, as I was so sick I could not move. He refused to prescribe more, saying that what I was experiencing had nothing to do with Lyme and was simply old age and arthritis. He said this even though I was only 43 at the time and had NO signs of any arthritis in any of the tests done along with my initial Lyme test. I had no idea what I would do next. This was the end of October 2007.
By mid November 2007, I wished to die. With no cure, no help and no hope in sight, I could not see myself, once an active athlete and caring mother, living the life of an invalid while enduring the most excruciating pain I have ever known in my life. (And as a veteran of two home births out of choice, I know a bit about pain.) My sister told me of a doctor of osteopathic medicine who was Lyme literate and might be able to help me. A beacon of hope came into my life.
I first saw this DO at the end of November 2007. I was put back onto antibiotics. A month later, by my own request to try to not take antibiotics, I was put on the Zhang protocol to fight co-infections with Babesia and Bartonella. Progress was slow, but progress was made. I started to regain my strength, appetite and ability to look after my children. By April of 2009 I was off all supplements and I was able to start exercising again. By November 2010, I ran the New York City Marathon in 4:12:58. In 2012, I completed ten races ranging in distance from 5K to half marathons and triathlons. I hit my first PR for that year in July running a 6:58 pace mile and in October I qualified for the Boston Marathon and will be running Boston in 2014. In 2013, I completed 4 triathlons, 4 road races, achieved 2 PRs for 10k races (46:27 and 45:35), ran 24 miles as part of the Reach the Beach Relay, on October 13, 2103 I ran the Chicago Marathon finishing in 3:42 and just completed the Boston Marathon April 21, 2014 in 3:50.
What I would like to tell the medical profession:
As you can see, I’m a competitive athlete who can persevere through a lot, but none of this would have been possible without further treatment beyond the CDC prescribed 3 weeks of doxycycline. If I had not received further treatment, I’m sure I would not be alive today. My personal treatment at the hand of a Lyme literate infectious disease doctor, who I assumed had my best interests at heart and wanted me to be well, turned into a personal journey to hell and back.
More money needs to be put into research about this disease, better tests need to be developed and more needs to be done to prevent it. In the case of those who DO NOT recover after 3 weeks of standard CDC care, follow up treatment needs to be recognized as a viable treatment and prescribed. More PCPs need to educate themselves about the disease and better public service announcements need to be made to keep communities reminded of the very real dangers of the disease. Ultimately, recognition of Chronic Lyme as a condition needs to happen and a cure for chronic Lyme Disease needs to be found.
What I would like to tell others with Lyme disease:
Find support from others who understand: When I was first diagnosed, I knew nothing about the disease. When I realized that I was still not well after 3 weeks of standard CDC treatment, I needed support and information. I found another Lyme disease sufferer, Amie Levasseaur, and together we spent many nights on the phone with one another discussing how we felt and helping each other to cope. It is said of Lyme Disease that you don’t get it until you get it. We both found this to be the case. As great and supportive as my family has always been, they could not feel the pain that racked my body 24/7 and gnawed away at every fibre of my being. Amie understood, as she was feeling the same. Amie and I referred to each other as “Lyme buddies” and provided each other a great comfort during very some very dark days. Amie and I vowed that when we got well, we would try to do something to help others with the disease. We decided we’d start a non-profit called “Lymebuddies” to be the human voice at the end of a phone to help give information and support to those who have Lyme and their families. In 2008 Lymebuddies became a reality and we have been doing all we can to also promote awareness and prevention within the communities where we live. As such, we hold two yearly events: Lyme-Aid, a music festival, and a 5K race called “Jimmy the Greeks Maine Mall 5K for Lyme Disease Awareness.” More information is available at www.lymebuddies.com.
Hang onto hope:
I’m no one special. I’m just a mother from Maine with a story and a passion for helping others. But one thing I’ve learned from Lyme is that no matter how insurmountable the disease seems, there are people out there who care and want to help and there are people out there who make a recovery. It is not easy and there is no magic bullet but it can happen. I think one reason there are not more recovery stories out on the internet is because after fighting such a hard battle, when you recover, you want to be done with Lyme completely. You want to walk away from it, you don’t want it to define you anymore. You are tired. However, I find it hard to walk away from a disease that nearly claimed my life and I don’t want others to get to that stage where I once was. My recovery is not 100%. I have flair ups now and again, but I have learned what triggers them and have learned to adapt my lifestyle so that I can be active. The journey was not easy; there were many, many obstacles along the way and many, many tears shed along the way. However, I AM ALIVE, where at one stage I wished to die, and now qualifying for not only the Boston Marathon but also the London Marathon and Berlin Marathon. With every step of every race I run, I try to raise awareness about Lyme Disease in the hope that one day a cure will be found. Don’t give up hope.
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