Saturday, March 14, 2009

Wandering the Wilderness of Contested Disease

When I first started learning about Lyme disease, I heard lots of stories of people who had difficulty getting proper diagnosis and treatment. I am beginning to understand what all these people have been through. I thought the testing was notoriously insensitive. Then I hear from the regular medical community that the tests produce too many false positives. Which is it? It can't possibly be both.

We got an envelope in the mail earlier in the week. It was from Anna's pediatric physician's practice. Lynette opened it and all that was in it was a copy of Anna's test results from California, wrapped in a blank piece of paper. No letter, no analysis, no offer to assist in her care and treatment. Nothing.

Lynette heard back from Dr. Ntim at Wake Forest University/Baptist Medical Center(WFUBMC). Dr. Ntim talked to a pediatric infectious disease (ID) Dr. about Anna's test results. The ID Dr. said that North Carolina was not a Lyme area and that the tests are notoriously inaccurate.

My mother-in-law has been finding out from friends of hers, of family members and friends, who are stricken with Lyme symptoms, without a definitive diagnosis. She knows another man who was treated with IV antibiotics for a short time and improved, but has since gone back downhill. He is convinced that his problems are not a result of a treatment regimen that was too conservative.

Lynette's been having some vision problems. She is unable to focus on objects due to double vision. We finally figured out from looking at her that one of her eyes was crossed. This is most likely due to nerve issues with the muscles that control her eye. One of our friends heard about Lynette's vision problem and said she new an eye Dr. at WFUBMC who saw this all the time in Lyme patients. He refers them for treatment for Lyme disease with ID Dr's. at WFUBMC. We actually know one person who was treated at WFUBMC for Lyme disease. Based on our experiences, I have to wonder if he was the only one.

We heard from another friend this week who's wife suffered through a "mystery diagnosis" a couple of years ago. They visited 13 Dr's. trying to find somebody to tell them what was wrong with her. They finally found a local ID Dr, Richard Marx, who made a diagnosis that made sense to them. This Dr. could be a possible local resource for us if necessary.

Anna is coming down with an upper respiratory infection. She started complaining of a sore throat yesterday. She had a low grade fever today and she's wiped out. I have no way of knowing whether this is just common childhood disease or manifestation of her Lyme infection.

We sent Anna's test results to an ID Dr. in Burlington who has agreed to see Anna on Tuesday. I am not holding out a lot of hope, but I am hoping that he will at least start Anna on a course of antibiotics. We'll see.

I found a really interesting long format news story on the Internet about Lyme. It's from a local TV station in Boston from this past November. It's kind of a 2o 2o type of feature. It is a great introduction to the whole Lyme diagnosis and treatment controversy. It is about 20 minutes long. Here is the link:

If you want to stream the video, just click on HERE about 1/2 way down the page. If you want to save it to your hard drive, right click on HERE and click on Save Target As... Save it to your location of choice and then you can watch it whenever you want or share it with others.

Lynette ordered the book written by the lady who is interviewed in this story. I'm looking forward to reading it. The title of this blog post is a quote that the author made in the video.

By now you know that North Carolina is not a Lyme state. I found this interesting document on the NC Department of Health website. It shows incidence of various diseases by county in the state from 2000 to 2005.

Once the page loads do a find on LYME DIS.

I have seen noticeable improvement in Lynette's condition. She stands up much easier from a sitting position. She can lift her right leg off the ground better which helps her move faster in the walker, get into the stairlift, and get into the bed easier. She still has that crazy happy attitude, which just blows me away.

Anytime something else bad happens around here, I always feel like I'm being picked on. Like we didn't already have enough stuff to deal with right now. Maybe it's just because I'm sailing this ship by myself.

My 18 year old son called me last night around 8:30. I could tell by the tone of his voice that he was very upset. He told me that he had wrecked his car and it was upside down on the side of the road. Fortunately he suffered only cuts and bruises. The car is toast, but Zack is fine. There can't be a better outcome as far as I'm concerned.

Thanks to all of you who are thinking of Lynette. One of our close friends that we have known for a long time came to visit us today. She is such a positive light wherever she goes. We have called on many people for assistance. None of them have turned us down. Thanks y'all.

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