Manchester, VT – LDSG of Southwest VT Forum at Burr & Burton Academy
Manchester, VT – LDSG of Southwest VT Forum at Burr & Burton Academy
Remarks of Pat Smith, LDA
Lyme, the most prevalent vector-borne disease in this country and the most prevalent vector-borne bacterial disease in the world is on the upsurge. It is present in the most unlikely places, I have heard from researchers in Siberia studying the disease and from a state health worker who contracted the disease in the CA desert. Different kinds of ticks such as the lone star are carrying Lyme or the Lyme-like disease the Centers for Disease Control (CDC) calls STARI, Southern Tick Associated Rash Illness. Different strains of the bacteria seem to be causing the disease.
Different types of ticks can carry and transmit many tick-borne diseases. Ticks are now carrying many other new diseases with frightening sounding names such as Ehrlichiosis (HME), Anaplasmosis (HGE) babesiosis, bartonella, tick paralysis, and the old standbys of Rocky Mountain spotted fever and tularemia, which are on the rise. That means you can be bitten by one tick and contract a whole host of diseases caused by different organisms, causing similar symptoms, sometimes requiring different treatments and some of which have a high fatality rate if untreated or improperly treated.
2002 saw a 40% increase in case numbers of Lyme disease nationwide with reported new cases at almost 24,000. According to the CDC, that reported number is about 1/10th of the actual new cases that met its criteria, so that means about 240,000 new cases of Lyme disease occurred in 2002. Since 2003, Pennsylvania, New York and New Jersey have reported the highest case numbers, respectively.
Vermont had 50 reported cases in 2004, 22 of them considered to be indigenous (acquired within the state). That means that Vermont probably had 220 new cases of Lyme disease that met the CDC criteria and were indigenous to Vermont in 2004. Last fall, tick testing for the bacterium causing Lyme disease in Vermont at three sites in Bennington Co. showed no ticks + at one site, 9% in another, and 21% in a third. On Butler Island (NW Vermont), ticks showed a 49% positivity rate for the bacterium causing Lyme disease. Veterinarians in Vermont have been finding a large number of dogs + for Lyme over the past several years.
15% or perhaps more of Lyme cases can develop into chronic disease. Research has shown the bacteria can enter the CNS in less than a day’s time after the tick bite and that the bacteria can enter and kill a cell which is supposed to kill it. Here is a picture taken by Dr. David Dorward from NIH Rocky MT Labs in MT where much of the government research on tick-borne diseases has taken place. It shows the bacteria entering a cell and killing the cell, a cell which was supposed to kill the bacteria. Additional research by Dr. Dorward has shown that the bacteria has the ability to enter a cell and come out of the cell cloaking itself in the cell’s own membrane, thus the body’s immune system does not attack the bacteria because it does not seem to be an enemy.
Early detection and early appropriate treatment help prevent chronic disease. Unfortunately, many doctors are still diagnosing based upon the CDC surveillance criteria, which the CDC has clearly stated are NOT for diagnosis. Because the criteria are very restrictive, many patients with Lyme disease are not being diagnosed. The CDC says Lyme disease is meant to be a clinical diagnosis, which is a diagnosis based on symptoms, history, exclusion of other illnesses, with testing an adjunct.
What are the CDC’s surveillance criteria–an EM rash or positive serology plus major system involvement. Why are the criteria problematic? First, studies have shown that the EM rash appears around 50% of the time, and that other types of rashes may appear, or there may be no rash at all. Early symptoms can include a flu-like illness, possibly a low grade fever, muscle aches and pains, lethargy, headaches. Unfortunately, Lyme disease can manifest in many other ways and sometimes will remain dormant for months or longer before causing symptoms. The bacterium that causes Lyme disease can attack all systems in the body and can produce skin, eye, musculo-skeletal, cardiac, and psychiatric manifestations. The disease can be misdiagnosed as MS, ALS, Alzheimer’s, fibromyalgia, and chronic fatigue. Several of our physicians have had cases of diagnosed autism in children whose symptoms disappeared upon treatment for Lyme disease.
Second issue surrounds the tests, Lyme disease tests are inaccurate–antibody response tests such as ELISA and Western blot can be negative when the victim has Lyme disease. Many insurance companies often do not accept doctor-prescribed testing such as PCR, which actually tests for the Lyme bacteria, although PCR is accepted for other diseases such as HIV, hepatitis, and TB.
The misuse of the surveillance criteria by doctors for diagnosing LD occurs despite the warning the CDC places on its website which states “This surveillance case definition was developed for national reporting of Lyme disease; it is not appropriate for clinical diagnosis.” Many physicians still mistakenly diagnose based on the CDC case definition while Lyme is meant to be a clinical diagnosis.
Insurance companies often use the CDC surveillance criteria for reimbursement determination. They may also limit treatment reimbursement to four weeks and substitute orals for IV. Therefore, treating physicians have a dilemma: treating sick patients who do not meet the criteria. Privately, several doctors have revealed that their insurance carriers strongly suggested they either leave the plan or stop treating Lyme patients long-term. A few continue to treat, some refer their patients to long-term treating physicians, while others, fearing reprisals or facing economic hardship, stop seeing Lyme patients.
Unfortunately, some of those at the greatest risk of acquiring Lyme disease are our children who not only face a high risk of infection through tick bites but who also may acquire the disease transplacentally from pregnant moms who have it.
When children develop chronic Lyme, not only are they fighting disease, but also they and their parents must fight to get a proper education. Numerous school districts are unaware of the problems of LD and its potential psychiatric manifestations. Therefore, instead of getting proper treatment for the disease causing the symptoms, the children are being ignored, punished, or ostracized or they may be improperly classified or not classified at all because some individuals think Lyme is not a serious disease. The LDA established LymeAid 4 Kids, a fund to help families with no insurance coverage for Lyme disease have their children diagnosed and treated. NY Times best-selling author Amy Tan is supporting the fund. Additionally, LDA published Lyme Disease Is No Fun, Let’s Get Well!, a book written especially for children 8-12 who have Lyme disease.
To address Lyme issues, LDA is funding many research projects, with two having been published over the past year in peer-reviewed medical journals. One mapped the genome of different strains of the Borrelia bacteria and found that the strains have the ability to rapidly exchange their genetic material amongst themselves. Another one showed the presence of Borrelia in mouse tissue along with autoimmune reactions, a double whammy for those infected.
LDA, working with 15 organizations nationwide as affiliates, Chapters and partners from RI, MA, CT, NY, NJ, DE, PA, VA, KS/MO, TX, OR to CA on other Lyme-related problems. Together with its Connecticut affiliate, Time for Lyme, LDA is partnering with Columbia University to open an endowed research center for chronic Lyme disease at Columbia. We have raised about 75% of the funds toward the center which will be the first of its kind dedicated to chronic Lyme disease. LDA has also helped to educate physicians with annual medical conferences, jointly sponsored the past three years with Columbia University, the 6th conference scheduled for October 28 in Philadelphia.
In May, we hoisted Literati with Lyme in Manhattan. Several prominent authors including Amy Tan (Joy Luck Club), Meg Cabot (Princess Diaries), E. Jean Carroll (Elle Magazine, Saturday night live writer), and Jordan Fisher Smith (Nature Noir) worked with LDA and spoke publicly about their experiences with Lyme disease and how it has affected their writing ability in a segment called Writers Block of the Worst Kind. They were joined onstage at New York University by Drs. Joseph Burrascano and Dr Brian Fallon, Columbia University, and Amy Tan held a fundraising event at her Manhattan home.
These partnerships are necessary because the government has spent little monies on Lyme disease despite the rapid spread of the tick vectors and the disease itself.
This pattern of lack of government focus and monies appears to be an anomaly when considered in light of Lyme disease activates at the federal level. Visiting the US Army Centers for Health Promotion and Preventive Medicine (CHPPM) at Aberdeen Proving Grounds, the LDA was surprised at its aggressive program, which includes impregnating army uniforms at the time of manufacture with permethrin for troops going into tick infested areas. CHPPM developed a pocket-sized lab to test ticks in the field so that soldiers may receive immediate treatment if bitten by ticks that test Lyme positive. Babesiosis and ehrlichiosis are also being studied. Tick populations are mapped with resultant data stored in GPS satellites. This data will soon be beamed to soldiers in the field wearing special prototype helmets containing heads-up displays, which will show the soldiers where the heaviest tick concentrations and highest tick infectivity rates are, allowing armies to maneuver around them.
Nov. 2003, LDA took a team of 14 to Washington, DC, to the office of then Sec of Health & Human Services Tommy Thompson, to tell him and all the high ranking members of the CDC and NIH who were video teleconferenced into the meeting about the problems Lyme victims face due to the misuse of the CDC surveillance criteria and the lack of research funds. Issues such as whether Lyme can be sexually transmitted, can be transmitted through the blood supply, or can be transmitted by other vectors which are known to carry the bacteria, need to be studied. These are valid concerns considering fleas, some mosquitoes and other insects have been shown to carry the Lyme bacteria, but there has been no proven transmission to date; the Red Cross changed its blood donor guidelines to exclude those diagnosed with chronic Lyme and the bacteria has been shown to be able to survive blood-banking conditions; and some doctors have claimed to find evidence of the Lyme bacteria in semen.
Two weeks ago we were successful in having identical bills introduced into the US House (HR 3427) and US Senate (S 1479) providing for $100 million over five years for Lyme disease research and education. When they are passed, they will formulate a task force including public members who will advise the secretary of health about the areas that need to be addresses such as testing, surveillance, treatment studies, and prevention and education.
The government is finally beginning to listen to its citizens about Lyme disease. Sadly but necessarily, we are growing in numbers and in strength. When I began about 18 years ago, few knew what Lyme disease was. Today, almost everyone knows someone severely afflicted with the disease, someone whose life and whose family suffered immeasurably from the disease. For me, that family was mine and that someone two of my daughters, one whose experience was life altering. She spent four years out of school, two more in a few hours a day. She could not read for years due to intense headaches from reading a sentence or two. She seized for years, sometimes 15 hours day of temporal lobe seizures which are like an altered state of consciousness, lost in a world where I could not reach her. Childhood passed her by as she struggled to learn medical terminology and procedures (her own IVs and IM shots) and while former friends dated, she fought panic attacks, horrendous nightmares and cardiac episodes of various kinds and worried about the morality of ever having children to whom she might pass this dreadful disease.
My daughter quickly lost any innocence about how society treats Lyme disease victims, but we were lucky, she did not lose her life as some we know have. Always a fighter, she went on to graduate college and have a career, although she still battles the disease every day of her life.
She has learned to live each day to the fullest, and perhaps fortunately for her, much of her memory of those years was wiped out due to the seizure activities she experienced. I am not so fortunate; I remember the hallucinations, psychotic episodes, inability to think and sometimes speak, and the fetal position. I remember it like it was yesterday, and I stand before you to say Lyme is serious. You need to learn about it to protect yourself and your family from it.