Using all tools available to help combat Lyme
This is one of a series of guest blogs by people who have enrolled in MyLymeData.
by Mike Hessler
In the summer of 2008, I spent one day boating on the Chesapeake with friends and family–and had a terrible time. There was an awful feeling of constant pressure in my head that wouldn’t go away. Little did I know that it would take nearly three years and countless doctors to understand what was happening.
As the headaches continued, I made my rounds through general practitioners, as well as multiple ENTs, headache specialists, orthodontists, and other physical therapists. No one seemed to be able to help me. In fact, all that the headache specialist at a top medical institution could do was prescribe a range of medicines in hopes of treating what he diagnosed as “New Daily Persistent Headaches.” I felt worse than ever after rounds of useless anti-seizure and anti-depressant medication intended to treat my headaches.
At this point, my future was bleak and I was open to trying anything in hopes of feeling better. I had no knowledge of or opinion about “alternative” medicine, but decided to give acupuncture a try. When I made the appointment, the receptionist told me that the doctor required new patients to go through a battery of tests. With no reason to object, I went to the appointment. It likely saved my life.
This monumental appointment took place in January 2011. I went for acupuncture treatment on my headaches, but left with a diagnosis of Lyme disease, Bartonella and Babesia. At first I was thrilled to hear the Lyme diagnosis. Finally, an explanation for all of the pain! I assumed that some medicine and a few weeks of treatment would solve my problems. My doctor cautioned me, though, and said that Lyme is very political. He recommended that I google “Lyme wars” to educate myself.
At this point, my life was in total turmoil. I never expected to be part of a medical controversy and adding to the situation was the fact that my doctor used autonomic response testing (ART), a form of muscle testing, to provide my diagnosis. This type of testing is questioned by the mainstream medical community, a point not lost on some people around me.
However, when your head feels like it is going to explode, you wake up with numb extremities, and can’t stand up for extended periods without a lot of pain, your perspective changes. I had to look past the controversy and make the best decisions I could. With little downside, I chose to move forward with the recommended treatment.
The remedies and treatment methods are too extensive to write about here, but included both natural and mainstream medicines. As many of you know, treating Lyme disease and co-infections does not make you feel better. In fact, it probably leads to the toughest times of your life. It took me nearly seven months from the time of diagnosis to when I no longer tested positive for any of the infections.
This seemed like an eternity, but looking back, I know I was incredibly lucky. I can honestly say that ART was the single most important factor in my recovery. Lyme is agile and the testing enabled quick adjustments to the treatment plan. I also feel strongly that both conventional and alternative treatments are important to our health. Going forward, I plan to use all the tools available, rather than taking a myopic view that one is better than the other.
It’s been an extremely long road to recovery. Lyme impacts everyone in different ways. In my case, the musculoskeletal system has been the most damaged. After treatment for the infections and many years of myofascial therapy, I’m proud to say that I’m nearly 100% recovered.
My wife and I recently had a baby girl. I wake up every day appreciating the basic things in life and I am thrilled that I have the opportunity to enjoy life with my family. While I’d never want to re-live my toughest times, I wouldn’t change a thing. I’ve learned more than I can ever imagine about dealing with circumstances that seem unfair or insurmountable, how much my family loves and supports me, and how the basic things in life bring the most happiness.
When I came across the MyLymeData website, I completed the survey with excitement. I’ve been through so much, but my experiences have never been captured anywhere before. I was thrilled to see precisely the right questions being asked. I strongly encourage other people with Lyme to spend 20 minutes completing the survey. Whether you’ve recovered already or are still seeking answers, your experiences are an important part of the total picture.
Gathering data from thousands of people—whether they use conventional or alternative treatments—will help provide vital perspective on the experience of Lyme patients. What helped? What didn’t? Those answers will help lead us to a cure. I hope you’ll join me in this important project.
Michael Hessler lives in New Jersey with his wife and daughter.