April 13, 2014
I was dx'ed with LD in about 2005. After taking a detailed history, my LLMD concluded I contracted it when I was 17, in the year 1971. I was very sick for a year at that time. I thought it was all in my head, and i wanted to see psychotherapist. That didn't help. I eventually improved, after I started getting some very deep relaxation through learning to meditate (Transcendental Meditation). Flash forward to age 30, and I was under stress in the Relationship department. I just fell to pieces again. Psychiatric issues: insomnia, anxiety, depression. It really made no sense. A year or two of convalescing, starting a new career (computer science), and I was back among the living. Flash forward to age 50. Major stress in the Relationship dept. again, and I crashed and burned. Same old symptoms. This time, my old recovery strategies did not work. I tried everything. New degree (Masters in psychotherapy), stress reduction, loads of doctors, exercise, etc. 9 yrs later, still trying.
Very complicated protocol. In 9 years, I have tried many, many things. I might write a book about it. Check my Lyme blog for the expanded version of the story. As of spring 2012, I'm just about to begin the Patricia Kane protocol for Parkinson's Disease. Most of last year, though, I had been doing IV Rocephin, oral Zithromax, and Mepron. Lots of supplements, HBOT, detox, various homeopathics, naturopathy, etc. Even trips to Brazil to the famous healer, John of God.
Primarily to get emotional support from others in my predicament, but also to exchange knowledge. This disease is so complex, and can take so many forms that we all need as much info as we can get. What works for others, what doesn't. What not to spend thousands of dollars on, how to deal with medical billing? First-hand accounts of experiences with LLMD's. I would like to devote some meetings to education about salient topics such as updates on new testing strategies, labs, pathogens, etc. rather than just telling our stories, each meeting.
Originally from Pennsylvania, I moved to the SF bay area in 1977. I have had Lyme for 40 years. I am undergoing IV therapy now, finally. I have developed Parkinson's symptoms. I just got SSDI, thanks to Barbara Arnold, the founder of this group.
Recommended. A good group of people, some who are very knowledgeable about this disease. There is plenty of time to hear other people;s stories, What works for them, what did not. They will spend extra time with a first time visitor. We all seem to have long stories to tell about our odyssey with Lyme disease, and this is a place where I feel like I am not alone. I have gotten some good tips for my own treatment from people in the group also.