Westchester, NY – Lyme Rights Rally Speech

Lyme Rights Rally Westchester County, New York, November 30, 2006
Pat Smith , President Lyme Disease Association, Inc.

Thanks organizers.

([Show clock] At first glance, this appears to be an ordinary clock, a closer look shows, it is not. What is wrong with this clock? It’s going backwards, counterclockwise, carrying us back in time. Just like this clock, the IDSA guidelines are carrying us back in time, taking us back to the dark ages of Lyme. True science moves forward, not backward, and like the clock running counterclockwise, the guidelines are not useful in our lives, so we need to get rid of both the clock and the guidelines [put them in trash bag] and replace them with forward moving guidelines that work, like the ILADS guidelines! [hold up copy]

Lyme patients are tired of being treated as second class citizens or worse. In an apparent display of bias over time, so called Lyme experts have characterized Lyme disease as a housewives disease, a yuppie disease, or a politically correct disease to have. They have labeled patients as crazy, as faking an illness, as addicted to antibiotics or even as having antibiotic seeking behavior. 

In 2006, the tactics have changed. Patient ridicule is out, disease banishment is in. Chronic Lyme disease has been scrubbed. That’s right. The Board of Directors of a medical society and its guidelines committee have decided that chronic Lyme disease does not exist, despite the fact that the government awards grants to study chronic Lyme disease, the Red Cross excludes those diagnosed with chronic Lyme disease from giving blood, and insurers won’t sell life insurance to those diagnosed with chronic Lyme disease. 

According to today’s Lyme “experts,” chronic Lyme patients suffer from the NOT Lyme Syndrome. If you have a positive Lyme test, it’s probably a false positive, so it’s NOT Lyme. If you have Lyme symptoms without a positive test, it‘s too vague, so you have NOT Lyme. If you have a whole page of symptoms which affect many systems in your body, you probably have several different diseases, but definitely, NOT Lyme. You can’t have any treatment for NOT Lyme, but you might need medication to deal with the stress of finding someone to address your NOT Lyme problems.

According to the CDC, children ages 5-9 are at the highest risk of contracting Lyme disease. Were your children diagnosed with Lyme by a treating physician? Well, according to some experts, it’s NOT Lyme, your children most likely suffer from Munchausen’s by Proxy─an epidemic of moms who desperately seek attention for themselves by spending years running from doctor to doctor, sometimes driving for days or hopping a plane to seek help for their desperately ill children. If that is ruled out by the experts, it’s still NOT Lyme. Most likely, your children are making themselves sick and obviously want to spend years at home, alone in bed, often in great pain, being taken care of by you, and taking doses of foul tasting medicines or painful shots and IVs, while their peers play sports, sing in the chorus, go to parties, date, and even have friends. 

How many of you live south of the Mason-Dixon Line and have Lyme symptoms? It has been conclusively decreed by the experts that there is no Lyme in the South, so you have NOT Lyme. Were you bitten by something but don’t know what and have a suspicious rash and other Lyme symptoms? It’s probably a spider bite, but it’s definitely NOT Lyme. Do you have a bull’s-eye rash which is definitive for Lyme? If so, It’s probably NOT Lyme, but you need to go back to the doctor in a few weeks to see if any real symptoms develop and to have a Lyme test that misses at least 50% of Lyme cases. 

Were you bitten by a Lyme tick and had Lyme symptoms but the doctor decided that the tick wasn’t attached for more than 24-36 hours? You have NOT Lyme, since the experts know you can’t possibly develop Lyme in a shorter time period. 

NOT Lyme is a very political disease. It is so political that the good doctors who treat “Not Lyme” are often persecuted by medical boards. Days, weeks, and months are spent by medical boards nationwide on cases which they often tout are NOT about Lyme. I remember several cases in this state which were NOT about Lyme despite the fact that the word Lyme appeared 42 times in the charges against the doctors. 

The State in another case spent a half hour stating that the charges were NOT About Lyme, then produced as its first witness a “Lyme expert,” who was eventually sworn in as a “NOT Lyme” expert who then tried to give his opinion on Lyme. The State then called in another Lyme expert who gave his opinion that, because the patients came from a non-endemic state, it was, you guessed it, NOT Lyme. 

How many patients have developed chronic Lyme disease after delayed diagnosis and treatment due to a NOT Lyme diagnosis? How many patients have been denied reimbursement from their insurance companies because it’s NOT Lyme? How many of our kids have been denied educational services because it’s NOT Lyme? 

Today, we are here to banish NOT Lyme and claim back Lyme disease. We will make it happen soon as we continue to receive new support from government officials─people like US Senators Christopher Dodd (CT) and Chuck Schumer (NY); US Representatives Christopher Smith (NJ), Nita Lowey (NY), Tim Bishop (NY), Wayne Gilchrest (MD); Connecticut State Attorney General Richard Blumenthal; NY State Assembly members Miller, Bradley and Mayersohn, Pennsylvania State House Majority Caucus Leader Phillips, RI State legislators Damiani and Gallison, Massachusetts State Rep. Kartoujian, NJ Assemblyman Chivakula, New Hampshire State Senator Kenney, California State Assembly Speaker Pro Tem Leland Yee, and Florida State legislators Homan and Wise, etc, etc.

We will not allow the IDSA and their followers to take our disease away. We will not allow them to marginalize our illness by changing its name, not recommending its treatment, and not letting our doctors decide how to diagnose and treat it. With a name, chronic Lyme disease can be recognized, diagnosed, treated, researched, and eventually, even cured. NOT Lyme will never be cured but will consign its unwilling victims to a painful, debilitated existence. 

The numbers here today show that the diagnosis of NOT Lyme has made us into a strong force, a unified team with rules, players, captains, coaches, even cheerleaders. This team will move forward with its eye on the prize─ physicians being allowed to diagnose and treat chronic Lyme disease using their clinical judgment. Those who stand in our way must be moved aside using every trick in the rule book. When the whistle blows signifying the end of the game, our team will be on top, our team will win the game, our team will take the prize. 

But right now, the game is not over, so we need to play our best, and as a team, we need to send a clear message: Chronic Lyme disease exists. Chronic Lyme disease patients need treatment. Chronic Lyme disease physicians need to be able to freely treat this disease. The IDSA and every physician, government official and insurer needs to hear our message loud and clear. They need to understand, we will not go away. We will not let them roll over us. We will win the game. The smart ones will join out team now. The others will have to suffer the consequences as our Team, Team Lyme, rolls to victory!