This is so heartbreaking! I tell my husband sometimes that if our daughter was "normal" she would have done committed suicide. It has to be hard on you all suffering from this with symptoms only getting worse too often.
I always have had a connection with people with disabilities like her and now I have a connection with people suffering from Lyme. I don't know anyone in my area that has Lyme either (although there probably are but diagnosed with something else).
It would be a great support although I wouldn't wish this disease on my worst enemy.
Just from my point of view, having to take care of my daughters every need and giving up my social life to take care of her for the last 8 months, she is not a burden. I'm sure you are not either! The only thing that bothers us is when we can't stop the pain.
Hang in there. It's a long road, but there is an end to everything. You are not alone in this fight. I wish you much strength, health and happiness in the future. (Hugs)