I am a 62 year old physician, a graduate of Harvard University and Albert Einstein College of Medicine. My daughter, Ali, and I both have ME/CFS/Lyme Disease. I had insidious onset of a neuroimmune illness in 1995, after giving birth to my second child at age 41. I was an emergency physician, working in a major trauma center, until 1996, when I had to quit due to intractable hypertension and a long list of seemingly unrelated symptoms. After a year, I recovered spontaneously to the point where I was able to have a private practice in which I treated the late effects of brain injury with HBOT and neurofeedback. I also treated “chronic Lyme Disease” patients in the hyperbaric chamber.
Ali had acute Lyme Disease at age 10 with an EM rash and CDC positivity. It was properly treated, but she became chronically ill at 12, with antibiotic responsive ME/CFS. Her symptoms became refractory to treatment for tick borne diseases over a period of several years.
In January 2010, after a few very grim years of aggressive Lyme treatment, we both had positive XMRV cultures and started antiretroviral drugs that had been shown to inhibit XMRV in vitro. We were both housebound when we started. Subsequently, negative XMRV studies resulted in a complete shut down of research into the possibility of other gamma retroviruses in humans. Nevertheless, we did very well on antiretrovirals, as well as other therapies, chronicled here.
In June 2011, I returned to private practice treating the illness that I know best. I was able to work part time for 5 years, but was forced to retire in August 2015 due to RSD/CRPS following a minor ankle fracture.
We discontinued antiretrovirals after 3 years, when it became clear there would be no support from the medical or scientific communities. Nevertheless, we have both continued on a gradual uphill course. The Wahls diet, pulsed normobaric oxygen and methylation support have been very helpful.
Thank you for reading and participating,
Jamie Deckoff-Jones, MD
Note: I am not prescribing for myself or my daughter. Ali is 26 years old and makes her own medical decisions.