Rocky Mountain High

I'll be traveling to Colorado Springs this week to see a physician who specializes in the treatment of chronic Lyme disease. Health related travel has taken me to Toledo to see Dr. Grubb, Bethesda,MD to be in a NIH study on POTS (and to pick the researcher's brain), Rochester,MN and now Colorado. I have tried to stay closer to home but that hasn't always worked out.

Last week Ralph and I went to a consultation with an infectious disease expert. He knew the purpose of the visit well ahead of time but wasn't up on the latest research by Dr. Fallon's group which demonstrated that 10 additional weeks of Rocephin was helpful to patients who had persistent cognitive symptoms after a standard course of antibiotics. Instead he quoted a poorly designed study from 2001. It was the cognitive changes that ultimately forced me to quit working so I'm especially interested in the Fallon study which was a double blind, placebo controlled study (medicine's favorite type of study set-up). In the end, he referred to the Sanford antibiotic guide as the standard to follow. Hell, any FP could have done that and saved me the time and expense of the consultation. He struck us as a bit arrogant but maybe it was because we differed on what was the best approach. He admitted that he hadn't seen some one with muscle atrophy or POTS due to Lyme. I'm not sure why the ID docs would choose a one size fits all approach to this infection. Surely we individualize the treatment of other infections. We are much more aggressive treating cellulitis in a diabetic compared to a nondiabetic; patients with COPD get more antibiotics for respiratory infections than those with normal lung function. I wish I had a more textbook version of the disease, then it would have been recognized earlier and a "standard" course of medication would make more sense to me.
Perhaps instead of memorizing "textbook" presentations medical students should spend some of their time learning how to seek patterns of symptoms as a way of reaching a diagnosis. Few patients have read the textbooks so few present exactly in such a manner. Since we treat people and not diseases we should concentrate more on the human aspects of an illness. The specialist I'll be seeing had been misdiagnosed with ALS when, in fact, he had Lyme disease. It'll be comforting to talk to a treating physician who understands the disease from the patient viewpoint as well as the medical one. He will be more open to acknowledging the unusual symptoms that this illness can cause. Now that I'm diagnosed I can talk more about the odd things I've noticed about my illness like: recurrent crops of canker sores, auditory hallucinations that have occasionally occurred prior to falling asleep, susceptibility to pressure neuropathies and tendonitis with only minor provocation ... . These are a far cry from the bull's eye rash and the joint complaints that are so often mentioned as signs of the disease.
Ralph and I are so appreciative for Dr. Smith's wisdom in making this diagnosis and cautiously excited about the chances for my recovery that we truly are experiencing a Rocky Mountain High in anticipation of better days ahead.