The Lyme Nightmare

I am still reeling today. I hate that expression because my bipolar/borderline personality mother used it when accusing me of hurting her, but here it is true... I AM reeling! Yesterday, Peter (the Lyme suffering son), and Oliver (the 21 yo activist who was home from school for Super Bowl), and I went to a Lyme support group that meets here in Raleigh. Not only is the meeting so poorly run, or shall I say "not run" that you could lose your mind, but it is positively depressing and hopeless. I don't know where to begin, except to say that the leader of the meeting does not lead and those few people who by sheer persistance, find the meeting (it is not advertised anywhere) are so depressed and so beaten, that the sense of complete hopelessness is awash over your entire being.

It is hard to describe the quagmire that is Chronic Lyme disease. It is a political, medical, and legal nightmare of the most extreme proportion. Medically it seems that there are few or no doctors willing to treat this controversial disease as there is no definitive protocol and the one commonly used remedy of long term antibiotics, is of great controversy in the medical arena and completely unacceptable by the insurance companies. So much so in fact, that one doctor formerly in North Carolina was sued for millions of dollars by Blue Cross and lost not only his practice but everything he owned. He has moved from NC to SC and now to DC but obviously offers no insurance reimbursement, so the out of pocket expense is out of reach for most of us. Other doctors have lost their licenses to practice through review by the Infectious Disease Society of America which is as riddled with conflict of interest as the tobacco industry and the infant formula lobby rolled into one! It is a frightening state of affairs when the members of that review board are in charge of our well being and health.

This of course also links into the political arena with attempted protest groups in legislative branches in local government and protests launched with little or no impact. The legal implications better known as CYA by most practitioners leave them unwilling to risk the witch hunt that awaits if they continue treating Lyme patients with long term antibiotic therapy, to the point where doctors seem to want to run for the hills when they are discovered to be Lyme-saavy or as the terminology goes, "Lyme Literate." If they are deeply moral, compassionate and really are doctors because they believe in human kind and truly want to help save lives, then this becomes a heck of a moral dilemma for them to wrestle with. Imagine, trying to decide between hanging onto your medical license and supporting your family and doing what you went to school to do, or losing it all while saving lives and health. Hippocratic oath anywhere???

So, the support group is hopeless really. I cannot sit at a table where no one is introduced, and there is one upmanship on who has had this disease longer or to a more severe degree. Then too, there are the really scary alternative treatment suggestions by some. I mean these sufferers are risking leukemia and the like by removing some of their blood and exposing it to infrared rays?! Or, using Bariatric oxygen treatments at levels potentially toxic to their brains. Two out of three, the leader of the group included shared that they would much rather have a diagnosis of cancer. This is hard, too hard. I hate my boy hearing this hopeless talk. I really hate it. I want us to start our own support group with maybe a guest appearance by someone who actually got cured and feels better. Imagine that? Or, maybe a pain specialist, or a mental health provider sympathetic to the ensuing depression. Surely, there has to be better support available then just sharing our darkest terminal thoughts.