by Dawn Irons, Editor

I’m mad. I’m fighting mad! The latest test results are in. This makes two of my three children that have been diagnosed with Lyme disease this year. We are still waiting on the test results for the third child. The prognosis does not look good.

My anger stems not from the diagnosis, but rather looking at how the diagnosis was missed was for so many years. I remember the frustration of being bounced from doctor to doctor as one specialist would refer me to yet another specialist. The multi-system involvement of my undefined illness was so obvious that each specialist needed another opinion from a different specialist —and none of them could put the multi-systemic puzzle together to come up with any answers.

I am finding that my medical mystery is starting to define itself…unfortunately we can only understand that in retrospect. Let me back up a few years and explain. My senior year of high school I was so ill that my family moved a bed for me in the living room of the home so they could keep an eye on me since I was all but bed ridden that year. I would have night seizures, severe fatigue, extreme vertigo, migraine headaches and horrible sensitivity to light and sound. Doctors did every test under the sun only to find nothing.

I survived my senior year and went on to college and battled fatigue constantly. Some of the other symptoms waxed and waned for over 10 years. In that time I got married and we started growing our family. Soon after the birth of all my children, we encountered frustrating medical set backs. My oldest son had the mildest symptoms. The middle child was back at the hospital in the Neonatal Intensive Care Unit (NICU) at 8 days old with deathly high biliruben levels.

The doctors could not determine the problem told me to call my family and start making funeral arrangements because they did not expect my daughter to survive past 24 hours. By the grace of God, she pulled through and the doctors never could give us a definitive diagnosis. My 3rd child was rushed to the NICU within 24 hours of birth experiencing the same problems my other children had. I asked the doctor why this was happening AGAIN and he began to question me about the medical history of my other kids.

This was the first time a doctor made some kind of connection that all of these neonatal issues could be related. We did not know that I had Lyme disease at the time, but the doctor explained that during the c-sections that my blood had crossed the placenta into the baby’s blood stream and began to destroy the baby’s blood as if it were a foreign invader. In retrospect it all makes sense now. Lyme infected blood entered their blood stream and their newborn immune systems were not mature enough to battle the infection well. It seemed that each pregnancy brought about worse symptoms on the baby. I had yet to be diagnosed.

Several years later I went through a string of 6 miscarriages in 4 years. My health seemed to decline greatly during this time and I just assumed it was the physical hardship of losing the pregnancies taking its toll. But in retrospect, I can see that the Lyme symptoms were just getting more aggressive. The worst part of this ordeal was when I went into began having contractions and birthed my first trimester twins still-born in their amniotic sacs. Babies don’t survive when born that early. They were perfectly formed.

Now fast forward to 2007 when my 13-year-old daughter came down with a case of Meningitis. They said it was not bacterial. So they ran every viral panel they could think of, only to come back with no answers. My request to ask them to test for Lyme was quickly shot down with the same rhetoric of “we don’t have Lyme in Texas!” Six weeks later after seeing a Lyme literate medical doctor her IgeneX tests and CD-57 panel confirmed a Lyme diagnosis.

My youngest child had been complaining for several months that his legs were hurting him and his teachers at school mentioned that he seemed to have the characteristics of a “highly functioning autistic child”. My oldest son has become increasingly tired with any amount of exertion and his allergies get bad enough that he has had recurrent sinus infections. He recently came down with pneumonia. His are the lab results we are waiting to receive.

As I look back on my family’s medical history, I cringe when I think of the hundreds of thousands of other families that go through this each year. After all, this has happened to our family and supposedly “we don’t have Lyme in Texas!” Imagine all those families on the east coast where it is epidemic! The CDC admits that Lyme is under reported by at least 200,000 cases each year due to their strict surveillance criteria; yet they refuse to adjust the surveillance test to yield more accurate results.

I am beginning to have a soldier’s heart for chronically ill people across our country…even the world. I can hear the rally cry of NO MAN LEFT BEHIND! As I sit here in Texas, it is the least I can do to use the skills that I have and help Lyme literate physicians get their message out to the masses. I can help Lyme patients gain a sense of community and help them to know that someone is in their corner. For all the misinformation that is out there, it just helps to know that I can do my part to get the most up to date information about these chronic illnesses so that no man is left behind! Not on my watch! I am highly motivated when I visit the grave of my twins to make sure no family has to needlessly go through the medical drama we went through due to the ignorance of the mainstream medical community concerning tick-borne illnesses.

If Lyme disease is so “easily diagnosed and easily treated,” as the Infectious Disease Society of America (IDSA) claims, then go read the obituaries on page 18 and explain that to me and the families of those people who lost the battle. How “rare” can death-by- Lyme disease be when I can fill a page of death notices each month? Just think about that.