Monday, June 2, 2008
Not getting better
Despite my best efforts, there is a subset of patients with neuroborelliosis who just don't get better. I am a family doctor in the suburbs. I push the treatment to the limits of my comfort zone. If there is no response then what? Of course it is always good to revisit the diagnosis to make sure you are on the right track. The problem is with referrals. Since the paradigm I practice from is so foreign to my colleagues this creates an enormous problem. The other experts that I might defer to are expensive and far away. Dr. Burrascano has retired from clinical practice. Dr. Martz is no longer seeing patients. And he was in Colorado. Dr. Fallon at Columbia does not seem to take many patients, except for research trials. Dr. Sticker is all the way in California and Dr. Jemsek is in North Carolina. I recommend that patients contact ILADS for recommendations and referrals. Very few Lyme doctors take insurance and most are very expensive. I cannot refer to local infectious disease specialists because they do not "believe" in chronic Lyme disease. The can be said for local neurologists. Those of us who have taken on the problem of treating chronic and frequently severe Lyme neuroborreliosis feel all alone in the cold. Ideally there should be a community of "Lyme literate" physicians who can work together in a collegial environment.Such a group might include: infectious disease experts, neurologists, neuroradiologists, immunologists, hospitalists, researchers and academic types. No such Mecca exists. The opposite is true. The medical Meccas of Johns Hopkins the Mayo Clinic and others reject out of hand the whole chronic Lyme hypothesis or paradigm. Many patients have been to many such prestigious institutions, had the "million dollar" work up, and come away with no diagnosis or treatment plan. When patients seek out the opinions of such experts, they find that their Lyme doctors are ridiculed or worse. Many Lyme doctors are almost underground. They continue to be persecuted by well meaning colleagues who turn them into state medical boards for quackery. Only Rhode Island and California provide Lyme docs protection from such charges. Doctors who are working on the cutting edge, challenging old paradigms, GETTING PATIENTS BETTER! are forced to spend their time, money and energy defending themselves against state medical board investigations. It is hard to help those few that don't respond. Join patient advocacy groups like the National Capital Lyme Association. Network with other patients. Ask ILADS for referrals. Keep trying different things. There is no one therapy which is universally successful for all patients. This unfortunately is a political issue. Patients must petition their lawmakers to understand the validity and serious of this illness. It is a quiet epidemic of untold proportions causing unbelievable suffering in so many. The Attorney General of Connecticut understands this situation. This is a start. If people work together, hopefully the dream of that multidisciplinary Lyme center will become a reality. In the meantime, I will do the best I can.