About

It felt like being trapped in a helpless, hopeless trap. A glass box. From inside this box you can see the help you need. You can see the people you need to help you. You try to get their attention. You bang on the box. You scream, and you scream, and you scream but nobody hears you.

On September 10, 2011, I sat down to watch a movie with my husband for our weekly "date night." Just as the opening credits started to roll, Frank announced that he felt sick, really sick, too sick to watch a movie.

He went straight to bed and barely left for the next 2 months. It ended up that he had Lyme Disease, Anaplasmosis, Mycoplasma, Bartonella, and very likely Babesia. He was so sick I thought he might die. At one point, he asked me to take out a life insurance policy on him and then leave him in a medical facility somewhere.

He had fight in him too though. He begged me for help, begged me to find a doctor to help him. It should have been easy because we live in the Boston area with some of the best medical facilities in the world. But, we soon learned that as bad as these illnesses are, the worst part is that there is no place to go for help.

As my husband was fighting to get well, I was fighting to get someone to help him. I talked to anyone who would listen. Though his primary care doctor and rheumatologist did not believe it was Lyme or any of the other infections, aside from Mycoplasma, I spoke to both almost daily. I called every "Lyme literate physician" in 5 different states. I called organizations, posted on blogs, emailed friends of friends, and posted on Facebook.

We were horrified to run into the same things over and over again. Excellent providers who have long waiting lists and don't take insurance. Doctors who don't treat Lyme Disease anymore, are retired, or don't believe in co-infections. Doctors and organizations who don't or can't return calls. There were doctors we could get into quickly but they didn't have enough knowledge of Lyme and co-infections to treat him, or worse, they didn't believe in it at all.

By this time we knew enough to know the tests and treatment he needed. It felt like being trapped in a helpless, hopeless trap. A glass box. From inside this box you can see the help you need. You can see the people you need to help you. You try to get their attention. You bang on the box. You scream, and you scream, and you scream but nobody hears you.

Only 7 months later, our daughter suddenly came down with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (PANDAS). We became trapped again in our glass box.

This has got to end. People should not have to writhe in agony in their own homes deciding whether it is riskier to stay home profoundly ill or riskier to go to a doubting hospital emergency room. Where are you more likely to die?