The diagnosing and treatment of Lyme and tick borne illnesses present a conflict in the medical community that some even deem a conspiracy. Why? I do not know why, but the basics of what has happened is the result of poor testing, and inadequate interpretation of data on the medical side leading to a great lack of consensus. On the patient end there exists an equal lack of agreement with so many choices of treatments, some of which do nothing for people who need a lot. These ends clash and cause a large gap in quality communication, leaving many patients confused and further vulnerable to poor quality of care across the spectrum.
I have a rather agnostic perspective when it comes to the disparate viewpoints. Clearly Lyme disease is not a minor, easily resolved infection unless caught very early, and maybe not even then. I am unconvinced it is the cause of all medical syndromes of unknown etiology. I do believe antibiotics are necessary, while I also believe they are not the only pathway to wellness. However, there exists a great number of practitioners and non-medical professionals that peddle pseudo-scientific solutions. There are wands with electrodes diagnosing illnesses and directing treatments, electromagnetic pulses tuned to kill specific bacteria, miracle proprietary herbs. Patients overwhelmed by illness find these voices at times the only validation, leading people to be under treated and over inflated with false, unfounded notions of cure. The conventional path is no better.
I was bitten by a tick over 10 years ago. Being poorly educated on tick removal, I panicked and tried burning it off with a paper clip. If you’re cringing over this, that may be because you know that by doing that I caused the creature to regurgitate the contents of its gut greatly increasing the odds of infection. I then ended up digging pieces out. I knew at least to do that. I did not connect this to the following flu that lasted weeks. I lost my job due to crushing fatigue as I slept through the early morning calls for substitute teaching. I began to have nerve pain in my shoulder. A doctor who drew blood for a Lyme test, said, “Come back and do it again in two weeks, these tests are often wrong.” I felt better. I didn’t go back. For the next decade, I had arthritic like back pain (I was in my twenties), insomnia, obsessive and compulsive habits, weight gain, gastrointestinal issues, transient pain in my arms, shoulders, and neck. What did my new doctor say? “Lose weight”. I lost weight, but didn’t feel better. He then said I was too stressed. This went on for years. Then one day both my feet went numb, symmetrically. I was getting lost on my way home, had intense pain throughout my body. Clearly I was very stressed. The doctor confirmed I was stressed after negative tests for diabetes, vitamin B deficiency and syphilis. He said if it wasn’t better in 6 months, we would discuss maybe MS or ALS. This did not alleviate my stress.
Had I stayed in his care, that may have been where I ended up. I have worked with my current physician to exhaustively rule out other causes of my neuropathy. But as I continually improve with aggressive antibiotic treatment this confirms the cause. I know at this point I am not getting worse. I have gained significant ground, but I lived untreated for so long that I know I will not get back to where I was. At no point has any of the controversy related to Lyme helped me get better. I worry that for some it is merely a focus for their anger over being ill and living with such a poorly understood disease. It seems on both ends of this controversial range it is the lack of acceptance over the ambiguity of Lyme and tick illnesses that creates problems for the patient and practitioner. There are many paths to wellness. Nothing is either/or. I must continually be open to other possibilities and expect the same from those who help me along the way. I continue my search for what works to improve my well-being and my work in helping others.
David Aronson LCSW