Well it is now 2013 and I am starting to feel more positive about how all this will turn out.
I found out last year that I did indeed have Lyme Borrelosis that was found in a direct blood culture back east. I have had severe head pain and neurological symptoms for almost 3 years; the most debilitating I have ever been. But I have been working with a great Lyme literate dr. and have been on IV antibiotic now for about 6 weeks now. It is a slow process to kill off the bacterial spirochetes but both my husband and I are trying our best to take it a day at a time.
The bad news of course, all the treatments, PICC line etc. is being paid for out of pocket all because of the IDSA ( Infectious Disease Society of America) and the CDC are running the whole "show" here and have set up the guidelines going on 12 year old false science for the health ins. companies not to cover the cost of people like myself who has probably had Chronic Lyme Disease for many many years and didn't even know it.
My husband and I have written to politicians including the President and others to see if something can be done to change these horrible guidelines. Nothing so far but I am still hopeful if enough people get involved and call and write their local and national politicians. What we really need it is a famous person to be a spokesperson for us. That usually gets the most attention.
In the meantime I am just mostly trying to concentrate on getting to feeling better again and getting out and enjoying life more and to the fullest. I am only 53 years old and long to again see my family back east including my very elderly parents and enjoying traveling and sightseeing with my husband and 7 year old Chocolate Lab again.
One must remain hopeful and positive.
Best wishes to all of you who are very ill and have had to experience a lot of what I have had to. It teaches you a lot about life, yourself and others and hopefully makes you more understanding to other people's plights in life and more forgiving of those who don't understand what your going through, get mad because they can't fix you and then just get downright mean and cruel.This truly is all a challenge!
I am extremely thankful for a wonderful and supportive helpful husband, many family members and friends who have just listened, tried to understand and still love me through it all.
A happy and healthy or healthier New Year to all who read this!