by Dawn Irons, Editor

It was a nightmare no parent ever wants to face. My husband and I recently had the frightening experience finding our daughter critically ill after what seemed a simple stomach virus. The first day started out as a typical flu. The second day was when we found her unresponsive and rushed her to the hospital where we were told she was in a coma.

Tests were run and we were told that she had a case of viral meningitis with encephalitis. The doctor warned us that with her level of infection that some people never wake up from the coma. We were immediately transferred to the local children’s hospital and assigned an infectious disease (ID) doctor. We spent hours giving very comprehensive medical histories of the entire family to the ID doctor.

Obviously there came the point where we disclosed that both my husband and I were diagnosed and being treated for Lyme disease. As if on cue, the ID doctor said, “We really don’t see Lyme disease in Texas, do you ever travel to the east coast?” We knew this would prove to be a point of contention with the ID doctor, so we tried to focus him on our daughter’s medical issue at hand.

While we were waiting for blood results to determine if it was viral or bacterial meningitis the hospital put her on IV Rocephin as a precaution. Within in 24 hours of being given antibiotics she was out of the coma, although still quite disoriented. It was during this time that a few of the doctors and medical providers on the PHA staff contacted me and urged me to have Lyme panels run on her since Meningitis and Encephalitis are known illnesses with Lyme. Since both of her parents were diagnosed with Lyme, this was not an outrageous request.

I was not sure how this request would go over with the ID doctor, but I made the request anyway. I was flatly refused. He would not even consider running the blood tests, of which my insurance company would cover 100%. He said Lyme disease is not known for being clustered in families and our risk of exposure in Texas is almost zero. I guess he had not read the Texas A&M study about the increase of tick-borne illnesses in Texas 4 years ago, but I digress.

The ID doctor further questioned my husband and I on how we came to get the Lyme diagnosis. I explained the bulls-eye rash I had, being fully symptomatic as well as positive lab results. He immediately wanted to know what lab ran our tests. I had personally had a positive test with Quest Diagnostics as well as IgeneX. He immediately explained how IgeneX was not a reputable lab because “their results cannot be replicated by the CDC.”

I asked him if he was aware of the Lyme specific bands that were removed from the CDC test in order to create a vaccine. The bands were removed because they wanted to avoid false positive results in the people who had received the vaccine...but the bands were so Lyme specific that they were used to create the vaccine (which subsequently caused more damage and injury and was removed from the market.) To this day, the CDC has not added those specific bands back into the mainstream testing because they are hoping to take one more try at a vaccine.

The ID doctor felt that was irrelevant and that IgeneX was not a reputable lab because their results could not be replicated. I sat their stunned. I wondered how an intelligent person could be so...well...DUMB! I knew this conversation was going nowhere! Has common sense completely eluded the Infectious Disease Society of America’s (IDSA) ability to think logically?

Let’s put this in elementary terms that we can all understand. Our english language has 26 letters that are very specific to our being able to communicate effectively in the written form. If both the ID doctor and myself were given an assignment to type out the words to the Pledge of Allegiance, yet two essential vowels were removed from his keyboard, OF COURSE he could NOT replicate my typing sample! He would be missing two essential vowels. How difficult is that to comprehend?

I realized I was in a losing battle, but knowing that my daughter’s health was at stake, we complied with his wishes while at the hospital, all the while having made an appointment with our LLMD to see her once we got her home. We still do not have those test results back at this point, but the peace of mind knowing that the labs were sent to IgeneX, who uses all of the bands for testing, is a great relief.

I truly have great concern for the Lyme patients in Texas who have to face this kind of ignorance of the disease among the arrogance of the medical community on such a consistent basis. I can tolerate mistreatment of myself..I am an adult. But they cross a line when they start endangering the long term health of my children.

This really is an elementary problem. Are the ID doctors in Texas (and nation wide) smarter than a 5th grader? Even 5th graders know that all 5 vowels are essential to complete and accurate written communication! So it would stand to reason that all available bands for testing Lyme disease would be just as essential in accurate testing outcomes for diagnosis and treatment.

But hey, what do I know? I am only a mom using common sense, not an ID doctor.