Sunday, October 19, 2008

Lyme Disease

I spent the day at the International Lyme Disease Conference in San Francisco. It was primarily for physicians who presented results of their research and those who are engaged in ongoing research for the disease. I wanted to go so I could put a face to some of the names that have become common in my household since my so Cory was diagnosed with Lyme. I wanted to go to have some hope about treatment for my son. I wanted to go to connect with others who are dealing with the devastating disease.

There's a new movie that made its debut at the Tribeca Film Festival called Under Our Skin. It's the story of lyme, its effects on people and the controversy within the medical and pharmaceutical community. Amazing film.

But for me, it is a journey of being with a child who is very much in the middle of a long process of healing. It's easier to be a support for illness that is more acute, but chronic illness calls for the ability to walk the walk of  long-suffering and complexity. Cure Unknown is the title of a new book that just came out about lyme. There are many ways to treat, and anti-biotics need to be changed periodically. Treating lyme  is an art form that demands physicians to be creative and passionate about their patients. Many doctors have lost licenses over treating these very needy patients.

As a mother I can only take in a little at a time. Not all lyme patients survive the disease, although I fully believe that Cory will. It's hard to see my son who got a full sports scholarship to USF be relegated to a life of survival. He sleeps 16 hours a day and is in a fog much of the time he's awake. He is not currently suicidal, although did buy two guns last year, just in case. The guns are now gone and the police are on notice in case he tries to purchase another.

Well, that's about all I can write now. I am in for the long haul and it does my soul no good to delve into a darkness that I sometimes get lost in.



KrisKraft said...

Keep the faith. I've seen lots of kids recover completely from Lyme disease.

I went to the ILADS conference, too, and I thought there were a lot of promising Lyme treatments discussed there.


Ruth said...

Kudos to you for going to the conference. Did you hear anything about using neurofeedback as a treatment? I still think it helped my daughter a lot. I have a copy of Under Our Skin and haven't watched it yet. I want to tell you that my daughter is doing really well. She had a bad reaction to a powerful antibiotic that treated her acne. So she has to give that up. We're trying to avoid Accutane, But all that is nothing compared to keeping somebody stable and healing their brain. And my point in telling you about it at all -- she had the presence of mind to realize she had a bad reation. So I know that she is healing after Lyme. I pray for your son's healing, I pray for his brain. I pray for his safety.