Newtown, CT – 2004 Rotary Lyme Disease Forum

Newtown, CT – Rotary Lyme Disease Forum

Newtown, CT – Rotary Lyme Disease Forum

Presentation By Pat Smith President, 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 desert. Different kinds of ticks are carrying Lyme, including the Lone star which is rapidly spreading throughout the country. Different strains of the bacteria seem to be causing the disease.
Ticks are now carrying many other new diseases with frightening sounding names such as Ehrlichiosis, 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. That year, New York, Connecticut, Pennsylvania and New Jersey, respectively, were the top four states in case numbers, although Connecticut ranked #1 in per capita cases. Due to the CT DOH’s removal of the mandate for labs to report Lyme disease cases to CT, CT has experienced a 72% drop in reported case numbers, a fact many of us believe will cost funding for the disease statewide and nationally.
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.
Despite that warning, doctors are relying on highly inaccurate ELISA’s tests for diagnosis. You CAN test negative and still have Lyme disease. Many doctors are unaware of this fact and are unaware that testing should be used only as an aid in diagnosis.
Additionally, they are often basing a diagnosis solely on the presence of an EM rash, the classic bull’s-eye, which is estimated to occur only 10-50% of the time. You can have Lyme disease without any rash at all, or with some other type of rash that is not a classic bull’s-eye. 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.
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 Monmouth and Ocean districts. This Oct. 1992 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. Another study by NJ family therapist Maggie Smith showed an 11.2 months average school absence due to Lyme disease.
The cost estimate available for medical treatment for 54 of the CDC study children was $5.2 million, and more than one-third of families of the affected children had 3 or more members who had at some time been diagnosed with Lyme, and 40% of the mothers were LD diagnosed.
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.”
As noted, children with chronic Lyme disease are often out of school for many years. Research by Dr Martin Fried, a pediatric gastroenterologist, might hold some answers as to why. In studies partly funded by LDA, he has shown that the Lyme disease bacteria can survive long term treatment by hiding in the GI tract. It can present as abdominal pain, vomiting, diarrhea, heartburn, blood in the stool or mimic Crohn’s or colitis. The disease can also affect the eye and problems can include optic neuritis and dry eye, and if the disease attacks the optic nerve, blindness can result. Children with Lyme may also experience morning stiffness, rest pain and muscle weakness, and sports participation may become difficult.
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. In children, a condition called pseudo tumor (increased pressure in the nervous system, intracranial hypertension) may develop which results in headaches and vision problems.
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.
Schools need much more education on this issue. It is one reason we developed our ABC’s pamphlet for parents & educators, and we became a professional development provider for teachers in NJ. Also in NJ in the early 90’s, we were successful in having the state adopt a Lyme curriculum and a law mandating annual teacher inservice for those educators who have students with Lyme disease. Here in CT, you are fortunate to have several groups including our affiliate, Time for Lyme with their school video, and CERCLD, raising awareness about the school problems and developing tools to address the issue. Newly formed CT Lyme Disease Coalition has also brought this problem to the attention of Health Commissioner Galvin. LDA is working with all these groups here and in other states on school problems.
Besides school issues, LDA is working with a dozen organizations nationwide as affiliates, Chapters and partners from RI, MA, CT, NY, NJ, DE, PA, KS/MO, and TX 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.
Last Nov., LDA took a team of 14 to Washington, DC, to the office of 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 some doctors have found evidence of the Lyme bacteria in semen.
The government’s lack of commitment 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.
LDA is also funding other projects such as
• mapping the genome of different strains of the bacteria that cause Lyme disease,
• the use of different types of brain imaging to look at changes in the brain due to Lyme,
• whether the bacteria is found in semen and/or in vaginal secretions.
• A number of our supported projects have been published in peer review including one which showed why the ELISA test is not always accurate in early disease (the antibody & antigen complex and the ELISA cannot test for complexed antibody), one demonstrating the accuracy of PCR testing, one which showed the neurocognitive deficits in children with Lyme disease,
• LDA provided Dr Brian Fallon of Columbia with a grant which gave him the data to apply to the NIH for the $4.7M long-term treatment study which is almost completed.

As a national organization, the Lyme Disease Association is unique, because it is run entirely by volunteers, including me. Besides research some things we provide
• Medical conferences for physicians, 2004 conference, Westchester on October 22, followed by the ILADS conference for doctors and health care professionals the next 2 days.
• Lyme Disease Update: Science Policy & Law is an LDA published book being shipped this week, which for the first time, takes the science behind chronic Lyme disease and puts the peer review into digest form for easy access for doctors and patients—problems with Lyme diagnosis and treatment, neuroborreliosis, other tick-borne diseases and the other forms of the Lyme bacteria are supported by science. The politics of Lyme are also outlined state to state and legal options are addressed.
• LymeAid 4 Kids is a newly created LDA fund which makes monies available to families who have no insurance coverage for their children for Lyme disease. The families can receive monies for children under 21 to be diagnosed and perhaps begin treatment. NY Times bestselling author Amy Tan is supporting this fund.

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 headachesfrom 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.
Her innate trust of adults was shattered by remarks from physicians to me in front of her such as “does she really have Lyme or do you just think she has it,” and from certain school personnel who did everything they could to prevent her from succeeding, trying to prevent her from taking honors courses, preventing her from induction into the national honor society because she had no after school activities (she was in school 2 hrs day by this time), and once a teacher calling and accusing her of cheating on HI because she couldn’t be getting grades like that otherwise. Another outright refused to provide accommodations until ordered to do so by the administration and was so nasty I was reduced to tears. All this while I was on the board of education there. Years later we heard that teacher contracted Lyme disease, and to my daughter’s credit, she never uttered a vindictive word. Sadly, that teacher had strained my charity beyond the limit, and I cannot say the same for me.
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 yesterday in conversation 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.
Government and academia may have turned a blind eye to this disease, but we cannot. It is our lives and the lives of our friends and families, particularly our children, that we must protect. I will close with a teen’s perspective on Lyme disease:
The Eternal Nightmare
We stand here…and wonder
why it is dark,
A haze covers our lives,
severing us from the world.
We search, grasp-there’s nothing
to support us.
No longer do we laugh;
we cry only grown-up tears.
Our childhood is shattered, our
souls stung and wounded.
Will sun rays ever reach
the children with Lyme?