April 25th, 2010
This letter and accompanying data sources are being sent to you in the hopes that as the Director of
The Herkimer County Public Health Department you can get this accurate information out to the residents
and physicians here in Herkimer County. As someone in a position to make a profound difference, it is
critical that you carefully consider the information I am providing, and that you work with urgency to
educate everyone in Herkimer County about the real dangers and afflictions of Lyme Disease.
May is Lyme Disease Awareness Month and as a County in the center of the state with the highest
number of cases this is an extremely important time to raise awareness. So I am calling upon you to take
action.
Many Herkimer County residents and clinicians including Doctors and Nurses are dangerously
misinformed on the potential severity of the symptoms of Lyme Disease and consider it to be a fairly easy
disease to treat. I myself was one of these people with misinformation until being disabled by Lyme Disease
for the past 10 years. Because of the lack of accurate information being provided to the caregivers all
Herkimer County residents rely on, I was left to self educate myself with the truth in order to be properly
diagnosed and to finally receive the treatment that has put me on the long road back to a healthy life. This
treatment, which is saving my life, is not available here in Herkimer County near my home, as none of our
local physicians properly test and treat it. I unfortunately know this to be true from my own firsthand,
documented experience; I went to many physicians here and none of them helped me receive my diagnosis
or treatment. I now travel monthly over three and a half hours to Mount Kisco, New York in Westchester
County to see a Lyme literate physician who properly diagnoses and treats Lyme patients daily, and who
understands the disease. If you were to review my medical chart over the last en years, you would find a
“text book” case of Lyme Disease left undiagnosed and untreated for so long. It started with a bite, an EM
rash, knee pain, then spiraled out of control with symptoms all known to be associated with Lyme Disease. If
only the doctors I went to knew what an EM rash looked like and how to treat me, I may not have had to go
through all I have. My case is not the only one like it here in Herkimer County. I have friends that also live
here but are being treated elsewhere for Lyme Disease, some of which do not have a “standard” confirmation
as the CDC requires for reporting, but do indeed have a Lyme Disease diagnosis reached from either
confirmation of an EM rash and + labs and symptoms, but not the positive 2 tier testing results. This was my
case until the recent + labs consistent with guidelines, showing active Lyme Disease both on Elisa &
Western Blot even after 18 months of high doses of antibiotics. This completely disproves that 28 days of
antibiotics is enough to treat even long standing cases.
I am writing to you to ask for your help in educating both physicians, nurses, and residents in our
county on the reality of the disease, prevention, accurate testing, and receiving proper treatment if an
infection is suspected. No one else needs to suffer as I have. Infected ticks and Lyme Disease are in our area
and we are all at risk. There have been many cases of MS, Lupus, ADHD, Autism, Mental Illness,
Fibromyalgia, CFS, ALS, etc. that have been overturned once tested positive and treated for Lyme Disease.
Doctors also need to be aware of all of the diseases with similar symptoms and consider Lyme Disease as an
alternative diagnosis for these diseases.
Enclosed please find the following items:
1. International Lyme & Associated Diseases Society (ILADS) Treatment Guidelines:
These are the guidelines that should be followed by physicians worldwide. Many physicians don’t
realize that there are actually a whole separate set of guidelines for treating Lyme Disease written and
practiced by Doctors that research Lyme Disease and successfully treat Lyme Disease and other common coinfections associated with Lyme Disease, such as Bartonella daily. If the insurance company refuses to pay
for extended treatment and prophylactic treatment, the patient should still be made aware of the option for
this. I have paid “out of pocket” for all of my Lyme Treatment and this is the only reason I am on my way
back to health. If I had gone by what doctors around here told me, I would surely still be unable to get out of
bed and would be continuing to get sicker.
2. Infectious Disease Society (IDSA) Guidelines:
These are the guidelines which doctors tend to follow. Insurance companies tend to also follow these
because they can deny treatment for any longer than 28 days to patients even if still sick because these
guidelines state that 28 days is enough treatment in most cases. These guidelines have been under
investigation for the last few years due to possible conflicts of interest with the authors and financial gain.
Lyme Disease needs to be clinically diagnosed by a physician that knows what they are dealing with.
Withholding treatment and the “wait and see” approach is leaving a chance for the disease to progress and
become harder to treat or unable to treat. These guidelines are ruining lives.
3. The Burrascano Treatment Plan
Treatment guidelines written by a Lyme Literate physician used to treat many patients including a
step by step approach to achieving a successful outcome.
4. My initial, personal Lab results…
…from when I was originally diagnosed with Lyme Disease in November of 2008 with a clinical
diagnosis made with a thorough medical history, current symptoms, + Lyme Elisa lab, + Bartonella lab.
Please keep in mind that this was the first positive Lyme test I have had and my tick bite and EM rash were
in August of 2000. Again, this is not uncommon as the testing is known to miss as many as 50% of cases and
approximately 50% of patients never develop a rash - this is why a clinical diagnosis is so important.
5. My current, personal lab results…
…after receiving treatment over the last 18 months with high doses of antibiotics including
Doxycycline, Zithromax, Ceftin, Rifampin, Flagyl, Amoxicillin, and Mepron. These are actually reportable
by CDC guidelines with a + result on both the Elisa and Western Blot. How many other people do you think
are out there suffering still without treatment?
6. Lyme Disease brochures:
A. Lyme Disease Physician Training Program: A program offered by ILADS to train physicians that
want to learn and receive credit on how to recognize, test, and treat Lyme Disease
B. Top 10 Tips to prevent Chronic Lyme Disease
C. Psychiatric Lyme
(Brochures A, B, and C are all available to order for free at www.ILADS.org. )
D. ABC’s of Lyme
E. Lyme Primer
F. Tick Bookmark
(Brochures D, E, and F are all available to order for free at www.lymediseaseassociation.org )
7. DVD Documentary on Lyme Disease- Under Our Skin
(Please return this to me when you are finished with it as I lend it to people in the area that are
questioning whether or not what they are experiencing with their own health could be Lyme Disease)
This DVD tells the story of how bad Lyme Disease can really be. It is being shown at screenings and
theatres across the country. It is an eye opening film. Everyone seems to have a similar reaction after
watching it – they all wonder why we are all told that Lyme Disease isn’t that bad and it is easy to treat.
Please watch it for a glimpse of what myself and my family and so many others are going through due to
lack of knowledge.
The following is an excerpt from page 48 of the New York State Prevention Agenda document
entitled “Physical & Emotional Health”. This document is posted on your Herkimer County Public Health
website, accessible here:
http://www.herkimercounty.org/content/Generic/View/40:field=documents;/content/Documents/File/1609.pdf
This is some very important information that gives a sense of the economic impact Lyme Disease can
cause our fellow Herkimer County residents, and it is one more reason why I am seeking your urgent support
and action on raising awareness about this terrible disease. Respectfully, I don’t believe that having critical
information regarding the physical, emotional, and financial impact of Lyme Disease buried in a 100-page
PDF on your website does enough to educate our friends and neighbors here in Herkimer County about how
to prevent it all from happening to them.
In the document you authored entitled, “Submittal of Herkimer County Community Health
Assessment” dated 9/15/2009, you indicated “lyme disease remains stable with only 4 cases reported in
2009”. I believe that statement alone completely fails to create the awareness and urgency needed to help
prevent this terrible disease, which is actually spreading at epidemic rates. Fact: New York State has more
CDC reported cases of Lyme Disease than any other state in America by a margin of nearly 2 to 1. The CDC
itself estimates that for every reported case of Lyme Disease, 10 go unreported, probably for many of the
reasons I have discussed herein. It is absolutely critical that you, as someone in a strong position to truly
make a difference and raise awareness, take urgent steps to do just that. Please consider the following
information:
I will be submitting articles with the support of my doctor in May to all local media outlets here in
Herkimer County on the dangers of Lyme Disease and would like to able to say that you and the Herkimer
County Health Department are also helping to bring awareness to the community. I have enclosed a self
addressed prepaid envelope for you to return the video once you are done with it. They are available at
www.underourskin.com if you are interested in a copy of your own. I have lost the last 10 years of my life to
this disease that could have most likely been treated and cured if any of the doctors I saw knew what at EM
rash looked like, what the symptoms of Lyme Disease are, and how to treat it. I am dedicated to putting this
terrible experience to work for the good of my fellow Herkimer County residents so that they hopefully don’t
have to go through what I have, and I would like your help and support. I believe it is critical that a well
organized effort to raise awareness throughout Herkimer County about Lyme Disease be put into place
immediately, and that it is our responsibility to see it through. Thank you for your time and consideration,
and please feel free to contact myself or my husband anytime.
Sincerely,
Stephanie Allen / Founder, www.LymeDiseaseAwareness.org
“This is a formidable pathogen and there’s still a lot we don’t
understand about it, and I think we have to be humbled before this disease.”
-Kenneth Liegner, M.D. (from his testimony before the ISDA
regarding the urgent need to update the guidelines)
UPCOMING EVENT IN OUR AREA:
JOIN US IN MAY AS WE HEAR FROM LYME DISEASE EXPERT Steven Bock ON HOW TO
PREVENT, DETECT, AND TREAT LYME DISEASE AND OTHER STEALTH TICK-BORNE
INFECTIONS INCLUDING BABESIOSIS, EHRLICHIOSIS AND BARTONELLA
Wednesday MAY 5th 6 pm-9 pm
HUDSON VALLEY COMMUNITY COLLEGE
BULMER TELECOMMUNICATIONS CENTER
(co-sponsored by the HVCC Physical Education Department and Hudson Valley Community College )
SPEAKER: LYME EXPERT
DR. STEVEN BOCK
“Under Our Skin” documentary will be shown.