Hi ConcernedMom22,
We found an engorged tick in Heather's armpit when she was 9 y.o. She started experiencing symptoms almost immediately, and they became more numerous and more intense over the years. We didn't know anything about
Lyme Disease and apparently neither did her pediatrician. With a smile, he chalked it up to "growing pains." She totally crashed 4 years later when she was 13. We pressured her doctor into doing a Lyme test, but it was negative- the useless ELISA test. We knew something was seriously wrong and pressured him to do more. He dismissed her and us and changed his diagnosis to - "she is just looking for attention, I recommend psychiatric help."
To make a long story short, we went through 2 LLMD's, and she did get better. While Heather felt a lot better, her immune system had not recovered. Then she relapsed a few months later. Then we took her to a place that had a completely different treatment approach than she had received before. She had a lot more wrong with her then the presence of some bad microbes. They successfully treated her, and her last symptoms were experienced in March 2010.
Most treatment approaches go after the microbe as the main culprit, and most effort goes into treating the microbe. This approach is dramatically different. They ask the question, "Why did this person get sick?" They have the insight and ability to answer that question most of the time. They then proceed to treat the person. It was a paradigm shift for me as I beheld this unfolding. Heather is absolutely strong and healthy at this point. She will be swimming at a D1 university next year on a scholarship, while she could not walk 4 years ago. Please forgive this Biblical metaphor, but she passed from death to life. We really thought that she was going to die. It took us 6 years from the time that Heather as bitten by the tick until she got well. There is hope!
I agree with Mort81's statement that about
80% of chronic lyme patients may go on to full recovery, IF they receive appropriate long term treatment. The problem is that many chronic lyme sufferers do not receive APPROPRIATE treatment. Therefore, they do not fully recover. Some people 100% recover and leave this forum. Some people leave this forum and go to other forums- still sick. Some never get better and leave all forums. Some get 90% better and quickly deal with relapsing symptoms as they arise. They have some limitations because pushing too hard brings relapse. They are still happy, though, because things are so much better than they were.
What do you want for your daughter? I am saying all of this because I am trying to prevent you from making all of the mistakes and spending all of the wasted time and money that I did. I am not trying to tell you where or how to treat your daughter. I am trying to suggest a philosophical approach to the illness.
Please do not worry about
any statistics. Statistics report on what happens. The outcome for your daughter is not bound by what happens to others. There are treatment approaches that defy the statistics. You are probably starting out knowing nothing about
Lyme and its issues. You are taking your daughter in a direction based on what you know, what doctors and others around you are saying, and what you think is best for your daughter. You are doing your very best. It will take time, but please try to think conceptually about
things as you go along. Examine every presupposition that you have and that your daughter's doctor and your friends offers to you as a "given." Seek the truth and you will find it.
If you would like to talk on the phone, I would love to talk to you. Click on my screen name, and you will see my email link. My wife and I were once in your shoes.
Don
Post Edited (Heathersdad) : 12/9/2012 12:01:23 AM (GMT-7)