Lyme Disease

hi my name is J. and I have 2 boys myself and a little girl. If it were me, I'm not sure where you live but I would contact a big hospital like the one in syracuse,ny (upstate meducal center) or even the one i albany ny. they would be my best bet. I just found out that I have to get my 1 month old tested for cystic fibrosis, and Im going to syracuse for that. thats what I would do . Try to get an appointment with a brain patholigist or whatever they call themselves , and explain to them your sick of getting tossed around dr. to dr, thats whats i would do. i hope i helped

Dear K.,

I am praying for you and I can't imagine what you are going through. I would go through a friend and get a referral to see a doctor which who you can trust. It's stressful when you believe thay all get taught the same things in college but you can never get the same answer from them.
Get a referral from a good friend and then see what that doctor says. Please let me know how it turned out.

Hi K.,

What sort of "abnormal" brain activity does he have? Has it caused any developmental delay? Or medial fragility? If so, then he is probably eligible for a wealth of services out there. I would contact a hospital near you (as someone else mentioned) but also look for advocacy agencies. I happen to work for one that might be able to help you out, but you would have to speak with the intake coordinator to discuss the specifics of your son's diagnosis. The agency is called SKIP of New York; the main office is in Manhattan but there are also smaller offices in Rochester and Buffalo areas. Call the intake coordinator, Joann Colucci, at ###-###-####. Joann is also really good at referring to other agencies, etc. which may be able to help. Best of luck to you and your sons.

K.,
I do not know much about Lyme Disease, but I just wanted to say HANG IN THERE! One day you will find the right doctors for your child and for your family. Do a little research on your own, if you can to keep yourself informed. Take it one day at a time. And know that I'm praying for you and your family. Good luck!
-Maggie

HI K.,

sorry to hear about your son. Any idea when he may have contracted the Lyme disease? What is "abnormal brain activity?". Did they do an EEG to determine that? (EEG is a common test done to asses brain activity) EEG's can show mutiple things, and depending on what it shows, that usually how the MD's come up with Diagnosis and prognosis.
That might be a place to start..I'm not that familiar with the symptoms of Lyme disease, but I am a Registered EEG Technologist and actually do the procedure..so I see lots of brain waves.
J.