Setbacks

The month of May was lost to me in many ways. After the pneumothorax I did get out to Colorado to meet the specialist and begin treatment; a one week delay. When I got the Rocephin dose up to 2 grams a day I began to feel even worse than I had before antibiotics. On the fifth day at this dose I developed a body wide, nonitchy, red rash that would fade into purple color only to become red again. When the rash flared I generally felt lousy and I noted that my body felt like it was covered in "Icy-Hot" cream, inside and out. I had a follow up appointment with the specialist in 3 days so I decided to keep going but I couldn't get anything done beyond eating,doing minor paperwork tasks and playing computer games. More lost time.
At my visit it was decided that the worsening symptoms and rash reflected too rapid a kill-off of the spirochetes and I was told to go back to 1 gram a day for 2 weeks with a slower ramp up schedule. The Mepron was similarly cut back. I'm to hold off on the Zithromax and Flagyl for now. Yesterday was my first good day since that change and I'm grateful to be able to think again. I was also able to weed in the garden and do most of my rehab; this gives me a sense of accomplishment. I had hoped to be on full doses of the antibiotics by now but am a month behind, which is frustrating.
I remain hopeful for a future recovery and although treatment got off to a slow start I did pick up some new insights: #1) Complications can occur even under ideal circumstances and the physicians involved can be empathic without needing to apologize for the problem. #2) There are many benefits to being under the care of an experienced treating physician. Initially I wondered why my clinic couldn't mimic the treatment offered in Colorado. Ordering the meds isn't the issue; it's knowing when and how to alter the plan that distinguishes between cookbook approaches and the approach of an experience practitioner. Maybe when I'm better I can gain such experience but for now I would be more likely to harm than help someone with a borrelia related disease. #3)Keep you eye on the prize. At one point my symptoms were so intense that I doubted if I could deal with them on a day to day basis let alone a long term one. I had read that some patients abandon therapy because it made them feel worse even though doing so meant their symptoms would progress. I made the active decision to go forward with the antibiotics despite the side effects because to choose otherwise would lead to a certain decline in my capabilities with no hope of recovery. Having the support of my family and friends makes the tunnel less dark and I am confident that in time I'll see the light at the end of it (and not a bright light that I walk towards). #4) Laugh whenever you can,for in those moments pain and other uncomfortable stimuli cease to exist.
Goodbye May, hello June.