My Story

I was bitten in 1983 while traveling in the south of France and within a few days my fever was so high, and my head and neck pain so debilitating that it was surmised that I had meningitis. Once a very large round rash was discovered on my back right along my spine it was guessed by the treating French physician that I was either bitten by a tick or a spider. I was placed on Antibiotics for ten days. My improvement was dramatic and I considered the event resolved.

Over the next few years I developed more symptoms than I could possibly recount here. They were roving symptoms that did not fit any medical category neatly. The Lyme Titre was repeatedly negative; I was having multiple random odd symptoms, including pain and exhaustion. Physicians ordered numerous tests, but all proved negative. In the absence of definitive medical proof that I had a clinically recognized syndrome, it was determined that it must be “in my head.” It must be psychosomatic illness.

It wasn’t until many years of suffering later that I finally found my way to a Lyme disease specialist in Connecticut who performed the Western Blot test. The numbers were “off the wall” and I had a severe case of Lyme disease. By that time the bacteria was deeply embedded in my body and brain; psychologically I was depressed, angry and disgusted by the lack of support that the medical community had failed to provide.

Long term oral antibiotics proved ineffective, though at times I had an exacerbation of symptoms – the Herxheimer reaction. At least this worsening of symptoms showed that I did indeed have Lyme disease, and the drugs were creating an effect. This showed me that the medicine was working, but it was insufficient.

I was placed on intravenous Rocephan since this was the best chance at an antibiotic passing through the blood-brain barrier. In other words, even though the other antibiotics worked to some extent, it essentially was not passing through to the brain to cure/heal the brain symptoms. The neuropsychiatric manifestations of Lyme disease were finally being researched and explored by Brian Fallon of Columbia Presbyterian Hospital. His work validated, for me, the connection between Lyme disease and memory, the Lyme fog, depression, word retrieval problems, word reversals, difficulty with handwriting, and many, many more symptoms.

I had to fight for it but I was on intervenous antibiotics for many months. That provided the basis for marked improvement in my health. I learned to combine nutrition, exercise and many alternative healing methods to finally come to a balance of health in my life. I developed a practice of energy healing, relaxation exercises, meditation and something called shamanic journeying which I have named REIKI FUSION. This type of therapy developed in the context of a SPIRITUAL CRISIS that Lyme disease induced in me. Good things can come out of bad.

Please write to my email address, with comments or questions or to give feedback. There’s a lot to learn and we need to be here for each other. I want to communicate my experience and expertise as a means of sharing the knowledge that will allow us to participate in our own healing.

Knowledge is empowerment, and it is with knowledge that we will be able to foster a more serious response from our medical providers. It is with knowledge and community that we will challenge the culture of denial and provide support for the courageous pioneers who research Lyme disease and treat us – in spite of potential legal attacks and peer pressure.