I'm new to the Lyme support group. I have two daughters ages 16 and 15 that were diagnosed with Lyme Feb. 2008. After 3 weeks of antibiotics the doctor we were seeing proclaimed them cured--even though they continued to be extremely symptomatic. We were sent to Children's Hospital in Milwaukee--Their great experts told me the girls were "just depressed"--get them some counseling. I came back to our local doctor. He told us the same thing. I have since searched and found a LLMD and the girls have been under treatment since this summer. One of my girls is currently on Zithromax. The other one is on Tindamax, Amoxicillin, and Zithromycin--along with several other supplements. Some days there seems to be progress--other days not.

Both were VERY active honors students. Now neither has much energy and one can barely get off the couch. They now struggle in school. One of my daughters has been doing her best to keep up. She usually misses school a couple of hours every other day or so. My other daughter has been out of school since March and has had homebound services. The problem has been the homebound service provider does not understand Lyme, even though I have tried to explain it. It has been a horrendous experience. To top it off, I work as a teacher in the same school district! My daughter that is more sick is just trying to keep up with 1 class--English.

Does anyone have any suggestions dealing with the school district to help them understand? I did purchase the "Under Our Skin" DVD--But hardly anyone (except the school nurse) seems to be interested.

I would appreciate any suggestions!

avaj

I am so sorry this has happened to your girls. When i was their age, my Lyme really took off. And it made me take a huge dive.

Get the nurse to check it out. Get her on your side. The nurse in my middle school was supportive, but like us, no one knew what was going on. In HS the nurses saw me decline, so when we got the dianosis in Fall of 91, they were eager to learn, and were a tremendous support to me.

Try and get as many nurses from the surrounding schools and districts together one night for a viewing. Do your best to make it fun but educational. Or even have the 1 nurse see it first, then the two of you can come up with ways to get the other nurses in the schools/districts involved. They need to understand that they are KEY to helping not only your daughters, but other kids who may also have this disease. And by their understanding the actual facts, they may just be the person that will have the insight that can prevent so much misery in the future.

You have a great start, and there are some great people here, with some great information. Share it with them.

Good luck, and feel free to pm me with anything

Christine

Post edited by: cmany, at: 11/05/2008 21:51

You might want to try finding a sympathetic local politician, like a councilperson or mayor. They are always willing to listen to their constituents. See if you can get their help by intervening on your behalf.

Also, ask around and see if there are other sick children, similar to your daughters. There is power in numbers, and the politician angle can work well there also.

Contact your local public health department and get Lyme statistics. Read up and be informed. Know what you are talking about when you deal with people, and they will listen to you.

You are a teacher, so you already have the skills. Use them to your advantage.

And please, keep us informed.

Tom

Ava

I really appreciate your support.

Ava