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Below are the notes I used to prepare for my recent TV interview on
Dec. 15, 1999. The material is about 6 pages long, including some references.
This show, On the Home Front is hosted by John Murphy and will be aired several
times on local (eastern Connecticut) Charter Oak cable channel #14. It is scheduled to air
Sat. 12/18, 2pm, Thurs. 12/23, 8pm, Tues. 12/28, 2:30pm, and lastly 1/6, 8pm.
Please feel free to use my notes for you personal use or as a springboard to
prepare for your own TV or Radio interview. There is enough material to cover perhaps 45
minutes to an hour but bear in mind, the interviewer will have his or her own twist on
asking questions. I shared an outline of key points of interest and concern to me with the
host which was very helpful for him. Also, by having contact info prepared ahead of time,
the staff was able to provide that on the screen also.
1 Introduction
 | TELL ME ABOUT YOUR BACKGROUND AND WHAT GOT YOU INTERESTED IN LYME DISEASE?
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I was born in Willimantic. I’ve lived most my life in Connecticut. I graduated
from the University of Bridgeport with a degree in nursing. As a young mother in the
1980s, once Lyme disease became public information, I was very interested in prevention
and early detection of the disease. Little did I know I was already infected myself.
likely stemming back to childhood.
| WHAT IS YOUR ROLE AS A SUPPORT GROUP LEADER?
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I typically counsel and meet with people with debilitating Lyme disease but I am also
interested in promoting prevention and research and I am involved in political advocacy
whenever possible. For example, earlier this year, I spoke at a public hearing held by
Attorney Gen. Blumenthol regarding insurance companies failing to cover treatment for Lyme
patients..
2 Overview of Lyme Disease
| IS LYME DISEASE UNDER-REPORTED?
The number of cases reported is on the rise. But many experts believe only 10% of all
cases in the U.S. are in fact reported. Many physicians admittedly do not report cases to
the Center for Disease Control in Atlanta. Considering that Lyme is the second fastest
spreading infectious disease in the U.S. this is not helping with surveillance of the
disease.
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| WHY IS LYME DISEASE OFTEN CALLED THE GREAT IMITATOR?
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There is no system of the body that Lyme disease can’t attack. It is often
confused with many other illnesses such as MS, fibromyalgia, CFS, ALS, mental illness,
ADD, MG, Parkinson’s disease, lupus, Bells Palsy, seizure disorders, eye disorders,
trans-mandibular jaw, menstrual disorders, and more.
| WHEN IS LYME DISEASE DIFFICULT TO DIAGNOSE?
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1. When physicians fail to base diagnosis on clinical findings and strictly rely on
blood tests many cases are mistaken for these other illnesses. The blood tests are only
about 50% reliable and often falsely negative once a person has gotten over the early
phase of infection.
2. The bull’s eye rash is only present about 50% of the time.
3. People who are initially misdiagnosed or not treated for at least 4-6 weeks may be
thought to have something else as the initial infection is forgotten or dismissed.
When it comes to Lyme, "Absence of proof is not proof of
absence."
| WHAT ARE SOME SYMPTOMS YOU OR ACQUAINTENCES EXPERIENCED?
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Too many to name! I’ll give you some of the most common and the some of the
weirdest... aside from rash, headache and flu-like illness, weeks, months or years, other
symptoms can emerge. Some people only have one or two, but others cycle in and out of them
every few weeks. It affects you from head to toe. cognitive difficulties..., unrelenting
headaches & fatigue, aching feet and hands, cognitive difficulties such as brain fog,
dyslexia, ADD, difficulty choosing words, the wrong word coming out, seizures, burning and
numbness, visual disturbances, ear buzzing, increase in allergies, hair loss, skin rashes,
night sweats, muscle twitches and spasms, tooth and jaw pain, elevated liver enzymes,
changes in appetite, and difficulty swallowing, GI or genito-urinary effects, heart
attacks, thyroid problems, intolerance to changes in temperature and air pressure,
psychiatric disorders, debilitating arthritis and more...
| WHAT RESOURCES DO YOU RECOMMEND REGARDING LYME DISEASE?
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Here are three recommendations: "Everything You Need to Know
about Lyme Disease and other Tick-Borne Illnesses" by Karen Forschner, founder
of the Lyme Disease Foundation, Hartford (http://www.lyme.org
860-525-2000).
Secondly, an excellent list of symptoms and diagnostic protocol and treatment for both
doctors and patients by Dr. Joseph Burrascano of East Hampton NY can be found on the
internet at http://guidelines.lymenet.org . My
own doctor used these guidelines and was able to get me to about 90% well following them.
Thirdly, "The Underdiagnosis of Neuropsychiatric Lyme
Disease in Children and Adults" or other articles by Brian Fallon, MD., many
of which can be found on the internet.
Several other suggestions can be found at my support group website,
http://lymesupport.com.
| DID YOU HAVE DIFFICULTY FINDING A DOCTOR TO TREAT YOU?
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Yes. I sought answers to my questions for several years. Finally I presented with what
looked like early Lyme symptoms, probably a re-infection. I had a hard time getting my
doctor to listen to me when I said I wasn’t well after initial treatment and several
re-treatments. I had to find another doctor who had more expertise in treating advanced
Lyme disease.
You can call the Lyme Disease Foundation for recommendations if you have difficulty
locating an experienced doctor.
| WHY WOULD DOCTORS BE RELUCTANT TO TREAT LYME DISEASE LONG TERM IF IT SEEMS TO BE
HELPING PEOPLE FEEL AND FUNCTION BETTER?
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Insurance companies have been keeping a close eye on doctors who treat a
disproportionate number of patients for Lyme disease with long term antibiotics. Negative
blood tests is often cited as the reason for refusal of coverage despite the fact that
these tests usually are falsely negative after initial treatment and that the patient is
responding to treatment.
| SO ARE YOU SAYING DOCTORS WHO TREAT ADVANCED LYME DISEASE ARE BEING SCRUTINIZED?
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YES... Many exceptional doctors are no longer covered by insurance due to their stance
on treating advanced Lyme disease. So called experts well-paid by the insurance companies
speak against them in hearings. these very "experts" have turned away many
people from their own practices who in fact have Lyme disease and are now improving on
antibiotics.
(3 examples)
- Dr. John Bleiweiss of New Jersey himself had Lyme disease. He was investigated for
treatment of 7 of his 120 patients who did not test positive for Lyme disease. August 12,
1994, the day after The Trenton Times published news about the investigation, Dr.
Bleiweiss took his own life .
- Locally, Dr. Phil Watski of Bristol was investigated in 1995, 1996. No charges were
filed but he no longer sees Lyme patients and his practice has been hurt. This has been a
great loss to the state and has affected many doctors who once welcomed and helped
tremendously advanced Lyme patients with open arms.
- Recently, Dr. Perry Orens of Great Neck, NY lost his license after 40 years service.
Many patients now stand by him for his ability to help them manage Lyme disease and are
helping with an appeal.
Every investigation such as this hurts experienced doctors and Lyme patients. It
stifles the art and science of medicine and is negatively influencing research.
You can read more about this dilemma on the internet, "The
Lyme Disease Conspiracy, " an article submitted to the US. Senate by Dr.
Joseph Burrascano, in 1993. http://www.jersey.net/~joebur/conspire.htm
3 Prevention and Research
| WHAT CAN BE DONE TO PREVENT LYME DISEASE? (3 things...)
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- PREVENTING THE BITE is the best defense.
Kirby Stafford, Ph.D.. of the Agricultural Research Station in New Haven recommends
chemical treatment of borders of yards, careful use of duranon, a pyrethron, for spraying
on clothes. It lasts several days. Mosquito and tick sprays are alright are ineffective
once they are absorbed into the skin.
- TEST TICKS FOR LYME DISEASE
This is a little known free service for Connecticut residents through the Dr.
Stafford’s department. Carefully remove the whole tick with tweezers. Keep it alive
if at all possible and put it in a ziplock type bag with a damp tissue. Then bring it to
your town’s public health department or town hall. If they don’t have the
appropriate forms, they can call 203-974-8604 and have them faxed. This is the best way to
know of the likelihood of infection and it helps the state monitor ticks. NOTE: although
many people think it takes 12-24 hours to become infected, there is no study proving this.
The sooner you remove the tick, the better.
- TAKE ANTIBIOTICS FOR TICK BITES EVEN BEFORE YOU KNOW IF YOU ARE INFECTED. This is
considered controversial, but after what my family has gone through, I say yes. An ounce
of prevention is worth tens of thousands of dollars of cure. Dr. Charles Ray Jones*, an
expert Lyme pediatrician from New Haven recommends 30 days treatment for tick bites in
children. He has handled over 1700 cases of Lyme including congenital cases. The worse and
most costly cases are those missed and undertreated. He advises pregnant women with Lyme
disease to take antibiotics throughout the pregnancy. (Quoted by permission).
| WHAT ABOUT NEW VACCINES?
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At this time I can not say I’m in favor of them as they are too new. In fact, just
yesterday (Dec. 14, 1999) a CLASS ACTION SUIT regarding the LYMErix vaccine was
filed in Pennsylvania. Apparently the vaccine is causing incurable autoimmune arthritis in
those who’ve got undetected Lyme disease and take the vaccine.
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/12-14-1999/0001096683&EDATE=
, Original Source: Mealey Publications, Web Site: http://www.mealeys.com/
| HOW LONG DOES IT TAKE FOR A TICK TO INFECT SOMEONE?
There has not been a study that indicates there is a minimum time frame. Obviously, the
longer the tick is attached, the higher the risk. Check yourselves carefully!
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| CAN TICK BITES CAUSE REINFECTION OR INFECTION WITH SOMETHING ELSE?
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Yes, re-infection is possible. My own children have been re-infected. Also,
co-infections are on the rise, including babesiosis and ehrlichiosis. If you suspect Lyme
disease, you should be tested for these as well. Each of these diseases can seriously
impair the immune system.
| WHAT ABOUT RESEARCH?
- We need a gold standard for testing for Lyme disease and to find a cure. Major
researchers are focused on prevention and treatment of people with positive blood tests
while thousands who test negative are being denied diagnosis and aggressive treatment. A
reliable blood culture could be the answer. Dr. Steven Philipps of Ridgefield and others
are working on one now. Dr. Willi Burgdorferi, discoverer of the Lyme bacteria was working
on a reliable test but the federal government cut out funding for this.
- We need a cure. Antibiotics only control symptoms of advanced Lyme disease. Very few
people have been objectively speaking, "cured" (no scientific proof as of yet
without a reliable test). By the grace of God, most of us learn to live with it with the
hope of a cure in the future.
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Resources:
http://lymesupport.com
Tick-Related Illnesses Self-Help Alliance
(Eastern Connecticut), Tel. 203-924-9395
"Everything You Need to Know about Lyme Disease and other Tick-Borne
Illnesses" by Karen Forschner, (Lyme Disease Foundation, www.lyme.org 860-525-2000).
Dr. Joseph Burrascano’s Guidelines: http://guidelines.lymenet.org
"The Underdiagnosis of Neuropsychiatric Lyme Disease in Children and Adults,"
and other research papers Brian Fallon MD, neuropsychiatrist (some available on the
internet)
"The Lyme Disease Conspiracy, " an article submitted to the US. Senate by Dr.
Joseph Burrascano, in 1993 http://www.jersey.net/~joebur/conspire.htm
Kirby Stafford, Phd. of the Agricultural Research Station in New Haven Dep. of
Entomology, Tel. 203-974-8604
 since
Dec. 15, 1999
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TV Interview Notes
