Home » In the Lymelight #2…diagnosis

In the Lymelight #2…diagnosis

I apologize for it being so long. I was having some website issues and then the holidays came. We have been busy here in Missouri. Tim Sorel screened the film My Kid Is Not Crazy here in St. Louis. If you live near one of the screening cities, take advantage of the opportunity. It had quite a few interesting pieces to the PANDAS history that I never knew. I have a feeling it’s going to shake things up a bit.

Where were we. So in July of 2013 we tested Joshua for Lyme through Igenex. It is supposed to be the gold standard for testing. I didn’t fully understand the importance of this until almost 2 years later. Our physician ran the test for IgG and IgM antibodies to Lyme bacteria. 2 tests. Here is my understanding for those who may be new to this (I am not a dr. These are my experiences.). When your body fights an infection it creates antibodies to the bacteria. The spleen is responsible for antibody production by B cells. At the first site of infection IgM antibodies are produced to fight that infection. IgM antibodies in blood indicates a recent infection. IgG antibodies indicate past infection. There is A LOT of political junk surrounding the diagnosis of Lyme. It is frustrating for patients who are sick and need help.

The CDC (Centers for Disease Control) requires that the Lyme IgG test must show 5 positive bands out of a specific set of 10 bands. IgM test must have 2/3 bands. You only need 1 positive band in either test to confirm exposure….but the CDC says that exposure does not prove a current Lyme infection….so you have to hit some magical combination of bands to be considered positive…(i know, right?) So an even longer story cut short….Joshua had 4 of these bands positive and 1 was indeterminate (I guess like an indeterminate pregnancy test). By Igenex requirements, he was positive. By CDC requirements, he was not.  (Another interesting note…your standard Western Blot doesn’t report on several of the required lyme specific bands.)

We wanted to make sure he was positive…so we elected to further test with an epitope test. So basically, they compare the Lyme bacteria DNA with the DNA in the bacteria found in his blood…it was a match…he has Lyme.  Along with our large battery of tests, we also discovered that although he had no sore throat and despite being on an antibiotic, he had 4+ growth of strep A and strep B in his gut……are you kidding me?? as well as another dangerous gut infection….I began to realize it was a miracle he was doing as well as he was. It was obvious with all of the infections and Lyme diagnosis, his immune system was struggling. His bloodwork was showing problems as well. Our previous specialist shrugged it off as “something is bothering his liver”…but that’s about all we got.

That summer we went to Disney. I hate heat….it was a heat index of 110-112 every day. I was melting. We left the hotel to get into my black mini van and here comes Joshua….with a flannel blanket wrapped around him. He begged me to keep it. He kept saying he was cold and promised to leave it in the van when we got to the park…and then mealtimes began to get interesting. (per Joshuas request, we will leave that there). When we returned from vacation, we would start treatment and the second 1/2 of our story.

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