2005-03-10 Corning, NY – Rotary Presentation
2005-03-10 Corning, NY – Rotary Presentation
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.
This area is often said to not have Lyme disease, however, I think today’s turnout says otherwise. In mid January, I spoke in Williamsport PA which is about 80 miles south of here. About 200 people showed up on a cold Saturday and stayed over 3 hours to hear me and 10 patients speak about Lyme disease. I could not get out of the room so many questions were being asked by those afflicted with Lyme. My brother who has lived in the area for 30 years came to the presentation and told me they did not have any ticks there until about 5 years ago and now they are all over. In December, in Reading PA. close to 400 people showed up on a rainy tremendously foggy Friday to attend an LDA benefit. Last year, along with some docs, I spoke to hundreds of people who crowed into a church in Trucksville PA about 110 miles SE of here. Ticks and Lyme disease are here, it is probably recognition that is lacking. In fact, I believe someone here has collected some of the local specimens from deer in the area.
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.
10-15% of Lyme cases 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, 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.
In 1992, I prepared and presented to Congressman Smith, the CDC, and the NIH, National Institutes of Health, a 9-district school study showing the impact of Lyme disease on children. As a result of my study, the CDC came to NJ and studied Lyme in 5 of those 9 NJ districts. The CDC study of 64 students showed that the median duration of illness at the time of interview was 363 days, and the mean number of school days missed because the child was too ill to attend was 103 days (with a range of 2 to 548 days). The median duration of home instruction was 98 days, with a range of 5 to 792 days.
78% of the parents stated that their children experienced a fall in grade point average during the time of illness, 79% experienced a decrease in the number of friends. A quote from the CDC study sums up the magnitude of the problem: “Perhaps the greatest costs incurred by the study children were the social costs of the illness and its treatment. Schooling and extra-curricular learning activities were seriously interrupted for most children; often, children spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports, and social activities. School performance of nearly all children fell, sometimes drastically, and in several instances was said to interfere with selection by colleges and universities.”
What I call transitory learning disabilities can occur, since Lyme symptoms can vary from week to week, day to day, hour to hour. Research out of Columbia University by Dr Brian Fallon has shown that children can experience an IQ drop of 22 points, which is reversible after treatment for Lyme disease. Cognitive problems (cognition is the mental process by which knowledge is acquired) include visual and auditory attention and slower mental processing speed. Memory and word finding difficulties may ensue. Often, children with LD may be misdiagnosed as having ADD. Seizures may occur.
Children with Lyme experience tremendous pain. A recent NIH study likened the pain intensity of Lyme to that of congestive heart failure. Sometimes because of the pain and the lack of understanding by those around them, children attempt suicide. A few years ago, a young man whose parents were members of our organization was told by a psychiatrist his diagnosed Lyme was all in his head. So he stopped his medication. The pain was unbearable, so he killed himself, leaving a note to that effect for his distraught parents. Another young girl did the same, saying no one understood her problems, especially the school.
Besides school issues, LDA is 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. 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.
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.
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.
NASA and the National Institutes of Health, NIH, have a joint 3-dimensional culturing project for Lyme disease bacteria using microgravity chambers, which mimic conditions in space and in the human body. They are studying how bacteria communicate in a 3-dimensional situation. Unfortunately this research which was thought to be ready for publication late in 2001, is still not published.
The government’s lack of commitment to helping patients find a cure has forced groups such as the Lyme Disease Association to raise monies for research projects. 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. Actress Mary McDonnell, LDA’s national spokesperson, is helping support fundraising for the Columbia Center. By summer, TFL & LDA will have over half of the necessary $3M raised.
LDA has also helped to educate physicians with 5 annual medical conferences, co-sponsored the past three years with Columbia University, held in Rye New York in 2004, and tentatively has the 6th conference scheduled in Philadelphia in 2005.
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.
In May, we will have a 2-day event in Manhattan called Literati with Lyme. 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) will speak 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 will be joined onstage at New York University by Drs. Joseph Burrascano and Dr Brian Fallon, Columbia University. A day prior to that event, a press briefing will be held at Columbia and a reception fundraiser at the NY home of Ms. Tan.
LDA has also funded many research projects, with two being published in the past six months in peer-reviewed medical journals, a very exciting one mapping the genome of different strains of the borrelia bacteria and finding that the strains have the ability to rapidly exchange their genetic material amongst themselves. Another one shows the presence of Borrelia in mouse tissue along with autoimmune reactions, a double whammy for those infected.
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 Phi Beta Kappa from Johns Hopkins and now is a production editor for a major medical journal. Is she cured? No, we do not use that word. Right now, one of the few times in the past 17 years, she’s off of antibiotics and in conversation recently was telling me how she walked 75 blocks home from work in Manhattan. Years ago, she couldn’t walk 75 steps after 18 hours sleep each day.
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 dread the thought that it might return. I promised myself then if she recovered, I would never allow another person to go through this disease alone if I could help it, and I stand before you tonight in fulfillment of that promise. Lyme is serious. You need to learn about it to protect yourself and your family from it. Thank you.