Lyme Walk, Corning New York June 7, 2008
Lyme Walk, Corning New York June 7, 2008
Pat Smith, President, Lyme Disease Association
I remember my first trip to Corning to talk about Lyme disease in 2005. We were told there was no Lyme disease here, yet that day we appeared on a TV program, did media interviews, and presented two talks, the second of which was attended by over 300 people–they kept expanding the room to accommodate the growing numbers.
Since then, Lyme disease case numbers have only gone up and the disease has spread. It is now found in all 50 states and in about 65 countries worldwide. The United Nations has commissioned scientific studies on climate change due to global warming and some have implicated Lyme, with a 2007 report indicating ticks in Sweden are now almost as far north as the Arctic Circle and are being found in January there. Here in the northern US, we are also seeing ticks seeking a blood meal over the winter. In January 2007, my daughter pulled a fully engorged deer tick from behind my then 5 year old granddaughter’s ear.
Lyme disease frequently strikes our children ages 5-14 according to the Centers for Disease Control and Prevention, CDC. In a CDC study in NJ of 65 children with Lyme disease in grades K-12, the median number of school days missed was 140, with median duration of home instruction, 153 days. 78% of the children experienced a fall in grade point average during the time of illness. Over 78% experienced a decrease in friends. “….School performance of nearly all patients fell sometimes drastically, and in several instances, was said to interfere with selection by colleges and universities.” A study at Columbia University demonstrated a rise in IQ of 22 points in a student with Lyme disease after proper treatment.
More research needs to be done and Columbia University is now the home to the Lyme and Other Tick Borne Diseases Research Center funded through efforts of the LDA and Time for Lyme (TFL), its CT affiliate. The Center, first of its kind in the world, is focusing on chronic Lyme disease research with one of the goals to develop a gold standard test. A recent Johns Hopkins study showed Lyme tests missed 75% of cases, yet they continue to be used diagnostically, thus, people with Lyme disease may be misdiagnosed with Alzheimer’s, CF, fibromyalgia, ADD, MS, ALS, lupus, and even autism.
Those patients who have a delayed diagnosis or are inadequately treated may go on to develop chronic Lyme disease, a condition where symptoms persist after the initial treatment. Here is where the problems of Lyme disease arise. Mainstream medicine says there is no chronic Lyme disease. In fact, one of the most powerful medical societies in the world, IDSA, Infectious Diseases Society of America, says chronic Lyme disease does not exist. It says it does not recommend any antibiotic treatment for Lyme patients, no alternative treatment, even no supplements. The Attorney General of Connecticut investigated the IDSA, and he recently announced a decision which says IDSA must re examine its Lyme treatment guidelines, but the current guidelines still stand until that examination is completed, and less and less patients are able to get treatment. The IDSA has also stopped the progress of the Lyme bills we have in DC for tick-borne diseases research. The bills would also provide for an advisory committee which would allow representation from patients and also permit divergent scientific viewpoints to be represented. IDSA does not want patients to have a voice in their disease; they do not want divergent viewpoints. They might lose control of the Lyme research agenda.
This controversy has created a climate where doctors are afraid to diagnose and treat. Unfortunately, that situation is not getting any better. It has forced patient groups such as LDA to have to work harder to raise funds and awareness. LDA now has 33 groups nationwide that work alongside it fighting Lyme. Most of these organizations are like LDA, all volunteers. We are patients and families of patients and we give up our time to stop this disease and to find a cure. Now we must also spend a lot of time advocating to allow patients to continue to be treated. To complicate matters, other emerging tick-borne diseases are on the rise, and many of them are transmitted by the same deer ticks that spread Lyme disease— they include anaplasmosis/ ehrlichiosis, babesiosis, tick-borne bartonella,
tularemia, and even tick paralysis from a toxin present in the tick. Add to that picture, the Lone star tick, which 22 years ago when I started working with Lyme disease, roamed only as far north as Central NJ where I live. It is now found as far North as Maine. It transmits STARI, Southern Tick-Associated Rash Illness, which looks, acts, and is treated like Lyme, but there is no test for it, and it is often unrecognized by doctors. The Lone Star also transmits Ehrlichiosis and Rocky Mountain spotted fever, as does the American dog tick. Lone Star ticks are very aggressive and will stalk you from great distances.
I spoke with a guy who takes pictures of ticks for a living, and he told me that he must be very careful with Lone Stars, as he took a vial of the tiny nymph stage of the Lone Star out of the refrigerator, and opened it up and they swarmed all over him before he could protect himself.
All of these diseases and all of these ticks need to be more thoroughly researched so we can find out how to control the ticks, what other kinds of disease organisms the ticks are carrying and transmitting, and how can we treat these diseases. To date, however, the government has turned a blind eye to tick-borne diseases.
While West Nile virus which may have 3300 cases a year gets over $80 Mannually, Lyme disease gets about $34M for 230,000 cases.
The Lyme Disease Association is trying to change that by raising monies for research projects across the country. It has not only provided monies for natural prevention research such as looking at nematodes for tick control, but also it has funded research which has provided a genome map for a number of different strains of the Lyme bacteria that may be infecting people. LDA currently has monies going into examining ticks to see what is inside them, and monies looking for a gold standard test for Lyme disease that can help patients be diagnosed and help those who are still sick to see if they are still infected. LDA has also helped to open an neuromuscular center at NYU to help Lyme disease patients who often have difficulties in that area. The Association also has the only national program for children without insurance, so they can get diagnosed and treated for Lyme disease, partnering with internationally acclaimed author Amy Tan.
Shortly, LDA will have a downloadable slide show for schools on Lyme disease awareness and prevention. And partnering with UMDNJ with a grant from the Environmental Protection Agency, we are working to develop an interactive online video game on Lyme disease prevention suitable for children I am here today because my youngest daughter went from a happy, healthy, gifted 10 year old who lived to play soccer and excel in school, to a child who could not get out of bed, who could barely walk 20 feet. She slept 18-20 hours a day, and when awake, could tolerate no stimulus of any kind, even talking or watching TV.
In the beginning, after her first treatment, we thought she was “cured.” She continued to play soccer while getting treated, then went off treatment for a short while. One day, she went to bed and did not get out of it. The long dark years began with IV, IM, orals, combinations. She was out of school over four full years and two partial years. Over time she developed hallucinations and seizures, reaching a time when she was in temporal lobe seizures for 15 hours a day, 6 and 7 days per week. Due to dedicated physicians, she overcame the disease and went on to Johns Hopkins University where she graduated with honors.
Today she works on a medical journal, and lives and works like there is no tomorrow. She even plays soccer 20 years into the disease, something she told me she would do if she was even well enough to do so again. She does not look sick, although she still is, and those who have experienced the ravages of this disease know that is perhaps one of its biggest curses. She now has heart damage due to Lyme and other serious systemic problems, but she has a life thanks to treatment.
I am here because I so admire her courage and strength and that of others like her. Today’s event was conceived by two teens with great courage, Victoria and Sarah, who shared a vision, one that took considerable effort and maturity to make into reality. Victoria who has Lyme wanted to turn her experience into a positive one, one that can prevent tens of thousands of others from sharing the same life altering experience she and her family have had due to Lyme disease. Her friend Sarah has helped her carry out that worthy goal. It is young people like them who will take the reins of leadership in this world and make it a better place in which to live. I am here today because of them and the work of a remarkable woman, Lis Heininger who, is the Chapter Chair for the LDA Corning Finger Lakes Area Chapter. She is a fighter and does not allow her limitations due to Lyme to affect her attitude about life, she continues through it in a positive way. She started Lyme awareness here in Corning.
The work of these three people will live beyond today and will have a serious positive impact on the lives of thousands of people in the future, preventing some from getting Lyme and helping to end the suffering of those who do. I thank them and I thank you for helping make today a great success.