Northern California Lyme activist Sylvianne Schwartz took part in the Institute of Medicine's June 15 "listening session" regarding Lyme disease. Here's the text of her remarks.

The Institute of Medicine, part of the National Academy of Sciences, is examining the “state of the science” regarding Lyme disease. In April, the IOM heard from various scientists. Recently, the IOM committee held the second of several “listening sessions” via telephone conference call, which allowed Lyme patients and advocates to give input.

My name is Sylviane Schwarz and I am the president of Humboldt Lyme Awareness Group in Humboldt County, Northern California–a high risk and endemic county.  I contracted Lyme disease in February of 2005, and I was misdiagnosed for a year and a half.I was totally disabled from the disease and unable to function–with crushing fatigue, sleeping 17 hours a day and doing nothing with the remaining hours, my memory loss was so severe that I could not even remember where my own home was.  I reported 31 symptoms of Lyme disease and yet it was not suspected.  It took me 10 months of treatment to be 2/3 of a human being again. The first standard of care did not work too well for me.

In 2009, we started a support group. As a result, we have spoken with over 250 people that have contracted Lyme disease and or other tick-borne diseases and this is just in a 40-mile radius.  Those people were sick for years or decades prior to a proper diagnosis and this is including children.

Some people did exactly what they were supposed to do.  Obtained early treatment up to one month and were let go without being monitored. As a result, those people were sent on a wild goose chase in quest for a diagnosis for years or decades as their health degenerated. Again, this is including children. 

Some people end up with a positive test and recall the tick bite, the date and the place and with all the usual symptoms of Lyme disease, and yet they are dismissed and told that it’s a false positive and denied treatment.

How long people will people have to suffer until we address how serious this illness is? How long will the politics of Lyme disease last? It’s been over 20 years and here we are.  How many children will be disabled from the disease at an early age and lose their entire childhood due to misdiagnosis and the politics of Lyme disease? They have no say in the matter, they are just innocent victims.

How many people will have to suffer before our society does something? How many health care providers will be devastated due to the misinformation?  Let’s remind ourselves–they are here to save lives not destroy them! How long will it take to even have educational programs about the potential serious outcome of Lyme disease?

Medical decisions are a personal choice and are difficult choices to make but alas it is extremely difficult to find a provider that is knowledgeable and courageous enough that will explain the two standard of care and treat those people should they opt to do so or even have the financial resources.

As for me in my mind and my own particular case and experience my personal feelings about the whole situation and issues surrounding Lyme disease and other tick borne diseases are  just plain and absolutely criminal and if I am better today is to no thanks to those so-called experts from the IDSA. They only can blow people off for so long. The question is how many will it take?

Read other remarks here:

“Lyme patients need treatment options”

Contact the Touched by Lyme blog at dleland@lymedisease.org.