By Judith Weeg
I am the president and founder of the Global Lyme Disease United Coalition (LDUC). Formerly a Health Educator with the Center for Disease Control (CDC) beginning with the AIDS epidemic, I write this story from a wheelchair due to misdiagnosed Lyme disease.
My personal fight with Lyme disease, took, and is taking many turns. I am a native to Iowa but was bitten in New York where I lived for 20 years. In the midst of 19 years of having severe Lyme disease, I have had to relearn to read and write. Off and on, I am in a wheelchair. I developed cancer. And I am still on earth to fight this battle. We have "nothing to fear but fear itself,” as President Roosevelt stated in the face of many odds.
When I was working for the CDC, I saw only concern and panic around the onslaught of AIDS. Today, the CDC seems to equally ignore the true science of Lyme disease. Lyme disease is the new AIDS. It is worldwide and affects children, adults, the elderly. It leaves no stone unturned in our modern society. It is passed by the bite of an infected tick (all species), fleas, biting flies, spiders, mosquitoes, and lice. Often the human victim never realizes the tragedy of the bite to come.
The Infectious Diseases Society of America and CDC control the world's attitude towards Lyme disease and they have systematically refuted science. What do we, as Lyme disease patients or Lyme-literate doctors, need to do to be heard? How can our need for long-term antibiotic treatment be recognized, until scientists create a cure for Lyme disease?
First, the true numbers need to be publicized. The CDC recently published new data on the number of cases of Lyme disease in the U.S. The numbers increased from 30,000 to 300,000. The data is ludicrous, and the CDC knows the numbers are closer to the millions in the U.S. At a 2010 Institute of Medicine meeting, Dr. Paul Meade of CDC declared Lyme disease an “epidemic” yet the truth of its global spread has been swept under the rug. Why? Our government health agencies need to provide a louder warning of the seriousness of the illness so the disease is detected earlier.
And then we the “people” need to be made more important than the “system.” We are Canada, Europe, Africa, the U.S., and the world. We have Lyme disease on all continents. We are sick! We are dying! The “system” entails government organizations like NIH, CDC and IDSA that dictate mainstream medicine. The “system” needs to recognize that the “people” are suffering and policy must change. The days of our Lyme-literate MDs being attacked by medical boards must end. The days of non-scientific guidelines by IDSA and CDC must end. The days of the lack of research into a cure for Lyme disease must end. As Sister Kenny, an Australian nurse, dealing with the Polio Epidemic of the 20th century so appropriately said: “The People are more important than the System!”
My disease, intensified by misdiagnosis after misdiagnosis, spurred me to create the LDUC. With LDUC, I made it my mission to save one person at a time. Our organizational motto is: "Whoever destroys a soul, it is considered as if he destroyed an entire world. And, whoever saves a life, it is considered as if he saved an entire world." [Talmud] The LDUC now has 150,000 Lyme disease patients involved, and we have support groups in most states and in Canada. We locate doctors to send to Lyme disease training and have telephone support groups for those who are home bound.
We have to work together to beat the epidemic of Lyme. Our LDUC logo says it all: Lyme patients holding each other's hands around the globe. Together, the “system” will recognize us.