Dear Mr.'s Stiller and Letterman

I saw Mr. Stiller's appearance on your show, Mr. Letterman. It's all the buzz in the Lyme community.

Mr. Stiller reported that he had injured his knee in Africa and that it wasn't healing and they couldn't figure out why. After draining fluid, which they were surprised was not blood, they ran some tests and asked him if he'd ever had Lyme Disease.

He said that he had not, but he had been in New England last summer and his son had a bout of Lyme Disease.

You then went on to say, Mr. Stiller, that you would be relieved to have this disease because it was better than having arthroscopic surgery, since Lyme is easy to treat. Mr. Letterman you pointed out that it would be odd for someone in California to get Lyme because its an "East Coast" problem.

Oh boy.

First, I offer a prayer: Mr. Stiller, I sincerely hope that if you have Lyme disease, you are one of the lucky ones and a few weeks of antibiotics clears this up. No one could wish the horrors of a persistent Lyme infection on another human being. (Ok, well, maybe a dark little part of me wishes that some of those IDSA panel members would get it. I'll explain that later. Meanwhile, I'll continue to work on purging that demonic impulse.)

Some of us live with serious ongoing neurological damage. Seizures, palsies, tremors, peripheral neuropathies, debilitating pains, brain fog, cognitive losses, profound fatigue, heart issues, breathing problems, digestive difficulties. The list goes on. This is in addition to the rheumatoid concerns of  swollen joints which are so painful we can't use our limbs. Some get it in their spines and are relegated to spending their days in a fetal position unable to move. We lose the ability to speak without slurring, or sometimes, speak at all. Our vision is effected. And may no one on the face of the earth ever have to live with hyperacusis - a growing sensitivity to sound which makes the entire world a heavy metal assault on your sensory system.

While you're recovering, I'd like to suggest that you and Mr. Letterman get a little bit more educated about the realities of Lyme Disease. Mr. Stiller, being a resident of California, you might acquaint yourself with one of the most prominent and active Lyme groups in the country: The California Lyme Disease Association. CALDA is a leading source of information and advocacy on the subject. There are some counties in California with an infection rate as high as that in Connecticut. Every state in the country now has Lyme disease.

Mr. Stiller, your son is so lucky that he was diagnosed and treated in a timely manner. The restrictive guidelines from the IDSA, whom I mentioned above, which are adhered to as intractable law by insurance companies, actually prevents many, many people from being diagnosed at all. Faulty testing and ignoring the clinical signs if there is not a rash present (only about 35% of Lyme patients ever get a rash) are the hallmarks of the undiagnosed patient. Then, if you get diagnosed and you are offered the "Lyme medicine", you'd better pray that the infection is mild enough so that four weeks of antibiotics does the job completely. For a some it will. For many it won't. Whether your symptoms are gone or not, your medicine will be. And you can be much worse off for having begun treatment and having it stopped midstream.

Mr. Letterman, you would never remember me, but you used to dine in my friend's Chinese restaurant in New Canaan, CT regularly. I would show up at closing time to hang with my friends and you would be there eating by yourself. You came at closing so you could eat in peace. I left you in peace and had a great respect for your desire for some normalcy. We did meet once or twice briefly, as a social nicety.

I write you now, as I struggle to get my life back. It has been ravaged by Lyme. Due to unreliable testing, I went for years undiagnosed and the disease got into my brain and nervous system. While I can look normal on a good day, I am far from it. Though I have doctors who confirm that I have a chronic illness and that I have acquired auto-immune disorders, I cannot get treatment. The insurance companies rule the day and what little treatment I was getting was retroactively denied. All based on the work of the the IDSA panel. Your own state Attorney General (now running for Senator) has worked on this topic. He investigated that group for anti-trust issues and found many conflicts of interest and that they had methodically dismissed any data or person which did not support their foregone conclusions about Lyme Disease. Don't be fooled by all the talk about an agreement with the Attorney General for a guidelines review process, either. They breached that agreement and left the whole thing in limbo. Still, their guidelines are used by insurance companies because it suits them to have any reason to deny having to provide services. Those of us who are sick become even more overwhelmed at the system we have to fight as we try to receive care.

I would ask now that you take a moment and look into the realities of Lyme Disease and offer us a little peace by helping spread awareness and correcting the misinformation you innocently disseminated. We struggle enough for affirmation and understanding. This segment on a very popular television show did not help. You could more than offset that with a little bit of effort.

May is Lyme Disease Awareness month. Perhaps you and Mr. Stiller could do a little research and find the time and motivation to create a public service announcement? Or do a segment on the show? We could provide lots of resources and names of knowledgeable people to interview. It would mean so much to so many, we would be eternally grateful.

Thank you for your consideration.