Dear Representative Terhar,
I am writing you in hopes that you will be able to help me, and the thousands of
others suffering from Lyme Disease here in Ohio and around the country. The
CDC estimates that the actual cases of Lyme Disease are upwards of 10 times
higher than what are actually reported.
The symptoms I have experienced included extreme fatigue, muscle weakness,
tremors, heart palpitations, fainting, dizziness, severe headaches, fevers, swollen
painful joints, rashes, jaw pain, stiff neck, vision changes, nausea, abdominal
pain, foot pain, back pain, and total malaise. For years I felt that I was more tired
and sickly than my peers, but I was still able to press on in school and work. I
always wondered what was wrong with me, and why my friends had children and
families, meanwhile all I could manage to do was just work and come home to
rest. I knew this wasn’t normal, but everywhere I went the doctors found no real
explanation to explain what was wrong with me other than chronic fatigue and
fibromyalgia. However, the medications for fibromyalgia did not help me.
Eventually in December of 2012 I passed out while driving and collapsed at work.
This became the breaking point for me, and my body could no longer keep up the
pace. I ended up having to take medical leave from work, and that was over a
year ago. I was forced to leave my job and have been basically been home
bound, with much of that time being bed bound since then. It has been a
nightmare, all from a tick bite that I don't even remember! I never got the telltale
bull’s eye rash. The Erythema Migraines rash may be absent in as many as 50%
of cases Lyme Disease.1 Those that do get the rash, can present in other ways
beyond the classic bull’s eye rash. There can be multiple red sites, raised, flat,
or blistered. Often they can be mistake for a spider, or mosquito bite. This can
lead to delayed visits to the doctor and misdiagnosis. Both perpetuate the
difficulty in treating persistent cases of Lyme Disease.
I live in Miamisburg, Ohio and have been diagnosed for a year with Lyme
Disease. I have seen many specialists, and a total of 35 doctors over the past
seven years, all of whom were trying to get to the bottom of what was
wrong. Along the way, we were able to treat specific symptoms, but not get me
back to "normal." I have been to the Cleveland Clinic six times, which is one of
the premiere medical centers in Ohio and the country. None of the doctors that I
saw there recognized my symptoms as possibly being Lyme related, and never
tested me for it. I have been to a Rheumatologist at The Ohio State University
Medical Center who came highly recommended and was told that I was, “too
young to feel so badly. Take more pain medication and exercise more.” I went
to an immunologist who ran a gamut of tests, including HIV, but never thought to
1
Stricker RB, Lautin A. The Lyme wars: time to listen. Expert Opin. Investig. Drugs 12, 1609–
1614 (2003).
run the ELISA or Western Blot for Lyme. I have been to four endocrinologists
and diagnosed with Graves’ Disease, which was treated, but my symptoms still
remained. I have been to two Otolaryngologists, and two cardiologists. I had the
full spectrum of cardiac testing. Everything was structurally and functionally fine,
however I was having angina and palpitations. I was put on a beta-blocker
medication and told I had Vasovagal Syncope, which basically means that I have
blood pressure problems that were making me pass out and have a racing heart.
I went to many urologists for chronic kidney infections whose cause was never
fully discovered, although I was put on prophylactic low dose antibiotics long term
to inhibit further infections. This however did not work; I continued to have
breakthrough kidney infections. My family doctor did all she could do, running lots
of tests, including MRI’s, CT Scans, radiographs, all kinds of blood work. We
were coming up empty handed. No one thought to ask me about tick exposure
or run the ELISA or Western Blot test. It wasn’t until I got a referral from a friend
to see a family practitioner out of Oxford, Ohio who was an M.D., but practiced
more holistically, did someone listen to my long list of symptoms and say, “hey, I
think this might be Lyme,” and ran the Western Blot test.
Before I was diagnosed I had no idea what Lyme Disease could do to a
person! Before I got too sick to continue working as a hospital manager and
veterinary assistant, I was aware of Lyme Disease in animals. They had been
treated, in my experience, with a short course of tetracycline antibiotics. So
when I was diagnosed I thought, "Wonderful! Two weeks on antibiotics and I will
be back to work and living my life again!" I was very mistaken! I had no idea
what I was in for. Everything I thought I knew about Lyme Disease was wrong in
my case.
I don’t believe that the majority of the doctors that I saw didn’t care about me, or
my case. However, I don’t think that Lyme Disease was even on their radar. I
believe that there is a three-fold problem in the medical community. First, the
divide in belief of acute vs. persistent infection. Second, the accuracy and
sensitivity of the current testing models. And third, the treatment guidelines.
Currently in the medical community there is a divide about the existence,
persistence, and treatment protocols for Lyme Disease and other tick-borne
illnesses. We seem to have two camps: one headed up by the IDSA (Infectious
Disease Society of America) and the CDC (Centers for Disease Control and
Prevention); the other by ILADS (International Lyme and Associated Disease
Society).
The current treatment guidelines given by the IDSA and adopted by the CDC are
what physicians are taught to use in the diagnosis and treatment of their patients.
They are also what insurance companies use as guidelines for what treatment
they will cover. These guidelines were written by a group of doctors and
scientists in 2006, and were reviewed by the same group and found to be
accurate again in 2009. Since that time they have not been reviewed with any
further research. 2 The IDSA treatment guidelines allow for 1-28 days of
antibiotic therapy.
“Therapeutic modalities not recommended. Because of a lack of biologic
plausibility, lack of efficacy, absence of supporting data, or the potential for harm
to the patient, the following are not recommended for treatment of patients with
any manifestation of Lyme disease: first-generation cephalosporins,
fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole,
amantadine, ketolides, isoniazid, trimethoprim sulfamethoxazole, fluconazole,
benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e.,
dosing on some days but not others), long-term antibiotic therapy, antiBartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous
immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific
nutritional supplements, and others (see table 4) (E-III).” Clinical Assessment
and Treatment Guidelines of Lyme Disease by IDSA
The doctors and scientists at ILADS disagree with the limitations of treatment,
and what is not recommended by the IDSA. Their guidelines are more broad,
“The duration of therapy should be guided by clinical response, rather than by an
arbitrary (i.e., 30 day) treatment course. The practice of stopping antibiotics to
allow for delayed recovery is not recommended for persistent Lyme disease. In
these cases, it is reasonable to continue treatment for several months after
clinical and laboratory abnormalities have begun to resolve and symptoms have
disappeared.” 3
The two schools of thought disagree on testing for Lyme Disease as well.
Testing for Lyme Disease is lacking in sensitivity and specificity. We need much
more research and funding to evaluate newer and better testing protocols. The
CDC considers a western blot positive if at least 5 of 10 IgG bands or 2 of 3 IgM
bands are positive. 4 Many patients do not fit into that criterion who have been
exposed to Lyme, and have all the clinical symptoms of Lyme but by CDC
standards are seronegative. Even if a person has 4 out of 10 bands they are
considered negative and not counted.
I am going to have to start IV antibiotics and IV Immunoglobin Treatment next
month. I am seeing a doctor in Columbus who does not take insurance so the
costs of the visits are, and will continue to be, astronomical. What I have found is
2
http://www.idsociety.org/uploadedFiles/IDSA/GuidelinesPatient_Care/PDF_Library/Lyme%20Disease.pdf
3 http://www.ilads.org/files/ILADS_Guidelines.pdf
4 CDC. Recommendations for test performance and interpretation from the second national
conference on serologic diagnosis of Lyme disease. MMWR 44, 590–591 (1995).
that my experience is very similar to many others who have gotten Lyme
disease. If it isn't diagnosed quickly and treatment is delayed, it is extremely
difficult to get rid of. Many of the doctors do not even think to test for Lyme
because they feel it isn't prevalent in this area of the country. And those doctors
who do treat patients with long term Lyme Disease do so off of the insurance
books, because the IDSA (Infectious Disease Society of America) and the CDC
(Centers for Disease Control) have set guidelines for treatment that don't allow
antibiotics to be given for more that four weeks. For patients that have been
infected with the bacteria for longer periods of time, this isn't enough to rid the
infection. These doctors who treat us are afraid of losing their medical licenses,
so they don't turn in anything to insurance companies. This makes for very costly
treatment! We in the Lyme community call these doctors LLMDs (Lyme Literate
Medical Doctors), and we share their names privately so that they are not
brought up on charges by the medical boards. These doctors who are brave
enough to take on patients who have been marginalized and thrown away by
other doctors are saving our lives!
It isn't that the IDSA and CDC are necessarily wrong in the guidelines they have
set, but they are too narrow to fit all the different cases of Lyme Disease. Their
claim that it is, “hard to catch, and easy to cure” trivializes the seriousness of the
disease, and detracts it from getting the attention that it deserves. If they would
re-evaluate and look at the research that has come from scientists and doctors
out of the ILADS (International Lyme and Associate Disease Society) all of us
who are suffering can be helped properly. Why is it that an independent
association such as the IDSA, and a group people with questionable associations
with pharmaceutical companies gets to make these limited guidelines?5 They
have not been held accountable to look into new research and evaluate the
guidelines since 2009. Cannot the IDSA and ILADS doctors work together to
share research and treatment information for those of us suffering from this
debilitating disease? Who will hold them accountable? The basic truth is that 4
weeks of oral antibiotics is simply not sufficient in many cases; one individual
study showed that two thirds of people infected with Lyme Disease that were
treated in the conventional manner were still infected 3 years later. 6 Other
studies show similar results of the inefficacy of this treatment in many patients.
Some legislators in New York’s State House of Representatives and State
Senate have begun questioning the current guidelines. Being in a state that has
traditionally been considered endemic to Lyme Disease, they are taking action.
State Sen. Terry Gipson, D-Rhinebeck and Assemblywoman Didi Barrett, DHudson are pushing legislation that would protect doctors who want to prescribe
long-term antibiotic therapy to patients with symptoms of persistent Lyme
Disease. This bill is called the Lyme Disease Doctor Protection Bill. It would
5
6
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
http://archive.biomedcentral.com/1742-5573/content/3/1/12
allow doctor to practice medicine for these patients without fearing backlash from
insurance companies and medical boards. Gipson also is sponsoring a bill
carried in the Assembly by Kevin Cahill, D-Kingston. It would mandate that
insurance companies pay for long-term care, something that also is worthy of
consideration. 7
On a National level, U.S. Sen. Charles Schumer, D-N.Y., and U.S. Rep. Chris
Gibson, R-Kinderhook are seeking legislation that would establish a federal TickBorne Diseases Advisory Committee. This idea is to ensure that all medical
points of view are being represented before public health policy decisions are
reached in relation to Lyme Disease.8
For Ohio specifically, due to budget cuts, ticks will no longer be tested for Lyme
Disease beginning this year. Can we really afford to cut this and not know what
is coming into our state? 9 Is there anything we can do to add the funding back
into this project?
Thank you so very much for your time! I appreciate all the work you are doing for
veterans and I know you are a very busy man. It means so very much to me that
you are interested in looking into Lyme Disease and the conflicts that surround it.
I truly hope that you might be able to help our cause here in Ohio and around the
country! If there is anything that I can do to help I would be more than happy to
aid you in anything that might further this cause.
Sincerely,
Angela Turner
There is a petition on change.org right now to ask the US Congress to reevaluate their treatment guidelines.
http://www.change.org/petitions/the-u-s-senate-calling-for-a-congressionalinvestigation-of-the-cdc-idsa-and-aldf
7
http://www.cbs6albany.com/news/features/top-story/stories/legislators-working-tackle-lymedisease-8811.shtml?wap=0
8
http://www.poughkeepsiejournal.com/article/20130607/OPINION01/306070023/Lawmakers-putsharp-focus-Lyme?odyssey=tab%7Ctopnews%7Ctext%7COpinion&nclick_check=1
9
http://www.toledoblade.com/Medical/2013/04/29/Ohio-stops-trackinginsects.html#XFpFh7Sqc5ZSHr3A.99
These are some basic pieces of information about Lyme Disease from the ILADS
website.
http://www.ilads.org/lyme_disease/about_lyme.html
I was very blessed to be interviewed by ABC22/FOX45 here in Dayton about my
experience. They aired this interview on May 29, 2013. I hope that I was able to
spread the word about Lyme Disease and educate people on early treatment.
http://www.youtube.com/watch?v=BlA70rhv_Ps
Also, I would like to share a video that was made by a friend of mine with Lyme
Disease for Lyme Awareness Month that tells all about a similar journey that
those of us infected with Lyme are going though. If you would take a few
minutes to watch it would mean the world to me, and those of us fighting this
terrible disease! It gives an idea of what we go through fighting this disease.
https://www.youtube.com/watch?v=Ga2nqezTaRQ