Starting Treatment

I met with the Lyme specialist on May 11 and began antibiotics that day. This represented a one week delay due to complications around my central line. The line was put in on May 3 and, unfortunately, the placement led to a collapsed lung. This is a known complication and while it was painful it didn't frighten me. I had a chest tube placed in the ER that night and was allowed to go home. I think I would have broken down and cried if I had been hospitalized. The tube came out on the 6th so I was able to fly to my rescheduled appointment in Colorado Springs the following week. The trip out exacerbated my symptoms of fatigue, weakness, pain and paresthesias. I would have had trouble getting there without Ralph, who did all of the planning, carrying and driving.
The Lyme specialist is a kind, experienced physician who understands Lyme from a professional and personal viewpoint. It's reassuring to discuss the unusual symptoms of this illness with someone who has lived through Lyme associated problems. After being burned so many times by my medical colleagues I know I would not have acknowledged all of my symptoms at the first visit with a doc who hadn't accumulated years of work in this area or who hadn't felt these things first hand. He is already in his mid60s and is willing to risk his career by offering aggressive treatment to patients with late Lyme, which he refers to as "borrelia associated diseases". In some states physicians have been brought before medical boards for taking this approach, which is not considered standard treatment. He was proactive in this regard by speaking to his state board about the rational behind his treatment program. The standard approach offers only 30 days of Rocephin for neuroborreliosis regardless of length of illness or severity of the disease. My reading suggests that this yields a improvement in symptoms rate around 63%, hardly a smashing success. In most bacterial infections we treat with the intention of a 100% cure rate. I have not seen an Infectious Disease article that justifies setting the bar so low. The ID guidelines talk about balancing risk of treatment against the illness related problems. In my case this is a no brainer- perhaps some changes in gut flora and possible gallbladder dysfunction is weighed against my current inability to work, think clearly all day long, be physically active. Not even a close trade off.
My new meds include Roceephin alternating with Flagyl for getting at both forms of the borrelia. I have Mepron and Zithromax for babesia (the latter needed prior approval). I take Actigall to prevent gallstones, Diflucan to prevent yeast overgrowth and acidophilus to maintain gut flora. I now have an underactive thyroid gland so Synthroid has been ordered. Before becoming ill I took preventive supplements like a multivit and calcium. Now I take 14 additional medications/supplements in an attempt to regain my health. No one can predict my outcome but I'm hopeful that I'll make substantial gains and to that end I'm willing to risk treatment related setbacks, swallow some pills and administer IV antibiotics. Anyone who knows me would be shocked if I made any other choice in this situation. I hope my insurance carrier sees things from my vantage point as that's one fight I'd like to avoid. My energy is limited and I don't want to use it in that arena when I need it for my "borrelia battles".