(This page was created a few years ago!)
To Contact the Surgeon General's Office
Please send comments, suggestions and invitations to:
The Surgeon General
Office of the Surgeon General
5600 Fishers Lane
Room 18-66
Rockville, MD 20857
http://www.surgeongeneral.gov/contactus.html#contact
Sorry, the links in italics below are no longer available.
Try these found at Google.com:
Click here to view Michael Lasalandra's Article about Lyme disease protesters:
http://www.bostonherald.com/bostonherald/health/lyme11031999.htm
Click here to submit a letter to Michael Lasalandra's Guestbook: http://www.bostonherald.com/guestbook/mlasalandra/guestbook.html
Dear Surgeon General,
I apologize in advance for my lengthy letter to you, but I cannot express this problem in
just a few sentences.
I ask that you kindly review my concerns and please do something about the nation's #2
spreading infectious disease, borreliosis (Lyme disease.)
In CT where I live, in 1995, a Dr. Phil Watsky of Bristol was investigated for
supposed over-diagnosis and over-treatment of Lyme disease. He had been one of
the handful of physicians in the state who was willing and able to aggressively and
effectively treat difficult cases of Lyme disease. He was acquitted, but ever since then,
not only did he shut his doors to new patients with later stage Lyme infection, but so did
most other doctors in the state who had a reputation for diagnosis and aggressive,
successful management of later stage Lyme disease with antibiotic therapy.
This pivotal event has even affected doctors' choices whether or not to
test for Lyme disease in both advanced and acute stages, and improper reliance on blood
tests to diagnose rather than simply confirm the clinical diagnosis of Lyme disease. These
investigations are still going on elsewhere in the US. Other examples include Dr. Natole
of Michigan, Dr. John Bleiweiss of New Jersey (who himself had Lyme disease and committed
suicide), a Dr. Swami of Pennsylvania, a
Dr. Brown of Oregon, and most recently, Dr. Perry Orens of Great Neck, NY. Apparently,
16 other doctors in NY state are under investigation for so-called over-diagnosis and
over-treatment of Lyme disease.
Dr. Charles Ray Jones, a 72 year old pediatric Lyme expert in New Haven is not covered by
insurance directly as a result of his stance. How I wish you could meet this wonderful
man. He has helped over 1700 children with acute, congenital and advanced Lyme
disease and other tick-borne illnesses from all over the states. How blessed CT
is to have him, but who will take his place?
If the vast number of Lyme patients would be heard, one
would find countless people ever grateful for the care they've received from these very
skilled and committed physicians.
Instead, what we see is less and less accessibility to doctors who will treat this
horrid infection aggressively. We see people disabled physically and mentally by
systemic infection that could be controlled. We see research for prevention and treatment
of people with positive blood tests or acute Lyme illness while those with advanced
infection are left to waste away untreated. This is inhumane.
It was by the grace of God that in 1995, I found a doctor within an hour of my home who
would treat my advanced case of borreliosis. You see, I found him before the Watsky
investigation was in full swing. I was one of the last patients with advanced Lyme
disease my doctor would accept into his practice.
My doctor had earlier presented a remarkable paper on his findings that most of his
"so-called" CFS patients who tested neg. for Lyme disease in trials responded
favorably to antibiotics for Lyme disease, thus inferring they actually had
sero-negative Lyme disease. Other physicians are finding that patients with supposed MS,
Alzheimer's, ALS, Lupus, serious psychiatric disorders, and more actually have Lyme
disease responsive to long term aggressive antibiotic therapy.
Sadly, this kind of pioneering scientific research on the local level is now a
rarity because these doctors who are finding Lyme disease to be persistent
chronic infection warranting antibiotics are being singled out by insurance companies and
medical boards for loss of insurance coverage and/or restriction or loss of license to
practice medicine. In general as you probably are aware, researchers are more at risk for
criticism and investigation than ever before in our history.
This is a very frightening trend in the US, especially in Lyme endemic areas such as mine.
I had Lyme disease since childhood and responded well to 26 months of aggressive
antibiotic treatment later in life. I never had the bull's eye rash and was not properly
diagnosed until I was re-infected and presented with a disseminated rash and a highly
positive blood test. I had to change doctors in order to continue treatment. You can read
my story if you wish at http://lymesupport.com
as well as that of other family members.
My third-borne son apparently contracted Lyme disease congenitally and suffers cognitive
and learning difficulties that have improved somewhat with treatment. He never exhibited
the bull's eye rash, tested neg. for Lyme with standard insurance approved tests, but his
infection was confirmed by a blood culture not covered by insurance.
My eldest son had acute Lyme disease once (with bull's eye rash) and Lyme hepatitis
another time. My second borne was diagnosed with later stage Lyme disease and responded
well to antibiotics. He later got re-infected (with bull's eye rash present) and responded
well to timely diagnosis & treatment.
My youngest son is now enduring his third Lyme infection just diagnosed yesterday,
confirmed by bloodwork. His chief complaints were recurrent headache and fatigue
(wooziness as he called it). These symptoms could have easily been dismissed by a doctor
who didn't want to open the can of borrelia worms so to speak. I know my son, and I know
this disease all too well now to have accepted anything less than testing and evaluation
for Lyme disease. How I wish my parents and doctors in my childhood could have done the
same for me.
Unlike past cases, this time, my youngest did not have the bull's eye rash. If I had him
treated profilacticly for 3 tick bites this summer, he would have been spared his later
stage illness now.
I have corresponded and counseled with countless people (some are family and friends) with
Lyme disease throughout the nation who have been improperly diagnosed or not treated long
enough. Some have been able to find a doctor who properly assessed them and are now
responding favorably to aggressive antibiotic therapy.
Others still don't know for sure that they have Lyme disease, or know they have it but are
refused treatment for active infection.
It is estimated that only 10% of all cases get reported to the CDC, and worse,
doctors intentionally do not report to the CDC. Apparently some doctors who have done so
regularly have been targeted for investigation.
Certainly by now I have made my point. I just have four more things to say.
1. There are dozens and dozens of research papers
substantiating the fact that later stage Lyme disease is persistent infection that can be
controlled by antibiotics. Yet a few doctors in highly esteemed positions
are refusing to pursue further investigation of that, and instead promote this unjust
"witch-hunt" and apparently get paid to testify against those few doctors who
are still willing to treat Lyme disease as they know best how to do.
For a brief overview from the perspective of one of the doctors who is being persecuted,
you can read a paper he presented to the Senate in 1993 entitle "The Lyme Disease
Conspiracy." http://www.jersey.net/~joebur/conspire.htm
This Dr. Joseph Burrascano whom you've likely heard of wrote a wonderful paper with
guidelines for diagnosing and treating Lyme disease, also featured in Conn's Therapy,
1998.
I thank God for this wonderful, pioneering, humane doctor/scientist. His guidelines were
used by my own physician who was able to get me from a subjective 40% health to about 90%
health. You can find the guidelines here: http://guidelines.lymenet.org.
2. I strongly urge that you also read about this serious
crisis in the words of over 300 other patients who are crying out for help
but we don't know who to turn to in order to reverse this trend of ignorance and denial of
antibiotic treatment for persistent infection. http://www.bostonherald.com/guestbook/mlasalandra/guestbook.html
These accounts were in response to a newspaper article by Michael Lasalandra of the Boston
Herald: http://www.bostonherald.com/bostonherald/health/lyme11031999.htm
3. Please restore funds to Willy Burdorfer at Rocky Mountain
Lab so he & his staff can continue their promising research for a gold-standard test
for all stages of Lyme disease that was brought to a halt due to cuts in funding.
4. Encourage & support the research and development
work of others such Steven Philipps, MD of Ridgefield CT and Dr. Mattman of Illinois in
developing a blood culture for Lyme disease. (Dr. Mattman's lab has been repeatedly
investigated in a manner that has disrupted her work rather than to help her and us Lyme
victims.)
In summary, how can it be that the 2nd fastest growing
infectious disease is so inadequately addressed in our nation? This is not as simple as
the common cold. Neuroborreliosis is as serious as it's spirochetal cousin, syphilis once
was, and probably is far more widespread than syphilis ever was in this nation. I don't
know any friends or relatives from the past with syphilis, but I can't number the cases of
Lyme disease I know of. I pray you will help us by knocking on the right doors and turning
the tables for us. Many of us despite our infirmities would like to come to Washington DC
to represent the situation. I hope you will hear from and respond to us. Our limited
internet contact with you is only a small representation of the real numbers of people
with Lyme disease.
Most sincerely,
Nancy Berntsen RN, BSN
founder & coordinator of Tick-Related Illnesses Self-Help Alliance
Dear Surgeon General
