LYME DISEASE HEARING: TINA GARCIA

IDSA REVIEW PANEL HEARING TESTIMONY
Thursday, July 30, 2009
Tina J. Garcia
Founder, L.E.A.P. Arizona
www.leaparizona.com
Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue, NW, Washington, DC 20004
Hemisphere A Room

I’m Tina Garcia, and I founded Lyme Education Awareness Program at
leaparizona.com. Our charity provides financial assistance to Lyme
disease patients for treatment that is denied by insurance companies, and
we struggle to keep up with the overwhelming number of requests for
assistance.

I thank you for serving on this Review Panel and for the invitation to speak.
I also thank Connecticut Attorney General Richard Blumenthal and his
staff. His investigation uncovered egregious financial conflicts of interest of
IDSA Guideline authors. These conflicts were in drug companies, Lyme
disease diagnostic tests, patents and consulting arrangements with
insurance companies.

I am here to express to you the exasperation of the worldwide Lyme patient
community, as we are victims of these conflicts of interest. Patients feel
violated, and there is a tsunami of patient frustration encircling this Hearing
today.

Excruciating musculoskeletal pain, debilitating cognitive dysfunction and
crushing chronic fatigue. Patients experience these life-altering symptoms
and relentless suffering due not only to Lyme infection, but the IDSA
Guidelines, as well. What the IDSA Guidelines do is sentence patients to
Life in Prison for the Chronically Ill.
If you spent time in the homes of patients, you would observe the
devastation in the lives of these families, some with several members
infected. You’d witness parents with Lyme, as sick as they are, struggling
to provide for their families, losing their jobs, their life savings and their
homes in the process.
Your hearts would break to see children with Lyme sequestered in their
rooms with their closest friends – an intravenous PICC line and an IV pole.
Children with Lyme miss out on years of education and social activities.
Our children are suffering and dying, and it is past the time for the medical
community to humanely respond to this crisis.

I contracted Borrelia burgdorferi (Bb) infection more than ten years ago. I
lost my ability to function normally, was misdiagnosed and the infection
ravaged my body for six years before I received Lyme diagnosis and
treatment.
I spent my days and nights in bed with the worst pain you could imagine. I
awoke feeling as though someone had been pounding my spine with a
hammer all night. I had to stop driving, I couldn't do the housework, I could
not prepare a meal. Due to swelling in my brain, I began drooling and
could barely hold up my head.
I hobbled around with excruciating pain in my knees, ankles and feet. And
I tripped over edges of sidewalks and fell on several occasions. I had
dementia and wandered from room to room, and my entire body
spontaneously went rigid while sleeping. The infection affected my lungs,
causing me to cough and choke for the past year and a half. I lost my job
and my home.

Had I not taken antibiotics, I wouldn’t be here today. And the only reason
I’m able to testify with restored cognitive function, is due to four years of
intermittent oral Doxycycline and Flagyl and intramuscular injections of
Bicillin antibiotics, through pulsing and in combination.
Not one doctor on my state-run insurance plan would treat me for Lyme
disease; my family paid for my treatment. And for financial reasons, I was
never able to have the intravenous antibiotics recommended. That lack of
IV treatment caused extended suffering and delayed my recovery further.
Although I’ve improved significantly with long term antibiotic therapy, I still
have residual symptoms. I experienced facial paralysis in February of this
year. This paralysis and the lung infection finally resolved with a three
month course of Rifampin 600 mgs per day, which as you know, is used to
treat tuberculosis and leprosy.
In reality, Bb infection is not often diagnosed in the acute stage. Patients
experience a resolution of acute symptoms, with or without antimicrobial
treatment, but over time the telltale symptoms of Bb infection manifest. A
simple word for this is “relapse.”
People attribute this gradual progression of symptoms to stress, lack of
sleep or a busy lifestyle, and most just tough it out, until the symptoms
become so debilitating, they know something is seriously wrong.
In reality, it is during this late stage of infection, after the pathogens have
colonized various tissues and organs of the body, that the majority of
patients seek medical help.
Patients report seeing doctor after doctor who, had they been given
accurate information, could have determined the root cause of the
conditions these patients were diagnosed with, such as Fibromyalgia,
Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Rheumatoid
Arthritis, MS, ALS, Autism, Parkinson’s and Alzheimer’s.
In these cases, the root cause turned out to be the bacterium that causes
Lyme disease, which manifests as all of these conditions. Research also
shows that Bb can cause cardiac abnormalities and lead to certain types of
cancer.
I have heard stories from patients across the U.S. and Europe. Patients
are told chronic Lyme does not exist, their tests are invalid, it’s all in their
heads, and are referred for psychological exam. Or, they’re told to take
Ibuprofen and get a job or a hobby.

One woman I met worked outdoors on the east coast and became quite ill
from numerous tick bites. She went to doctors for help and asked them to
test her for Lyme disease. Testing was refused, she was told she didn’t
have Lyme infection and was diagnosed with ALS.
When I met her, she was quadriplegic. We met for lunch in a restaurant,
and her husband held her sandwich for her so she could take bites,
because she couldn’t lift her hands. She was a brave woman to eat in
public like this.
She finally found a doctor who tested her and she was positive for Lyme.
She began IV antibiotics and was able to arise from her wheelchair to walk
with her physical therapist. She was making significant progress until her
insurance company stopped paying for the treatment, citing the IDSA
Guidelines, and she regressed into a paralyzed state.

Patients are experiencing denial of medical treatment for protracted periods
of time. This exacerbates infectious damage and delays the chance of
recovery. Patients are not just a collection of anecdotal stories as is
portrayed by the so-called Lyme experts.
The real Lyme experts are the Lyme-treating physicians, who treat our
neglected patient population, despite the very real threat of medical board
prosecution for doing so. They are the only physicians that Lyme patients
can rely upon. For when we try to rely upon infectious disease specialists,
who adhere to the IDSA Guidelines, we are denied treatment.
Our charity faxed a Questionnaire to seventy-four ID specialists asking to
place them on a referral list for Lyme patients. Of seventy-four
Questionnaires, we received eight responses and all were negative, such
as:
"I don't believe chronic Lyme exists."
"I follow the IDSA guidelines on the diagnosis and treatment of Lymes
disease."
"I am not convinced such an entity exists after appropriate treatment.
‘Consensus of opinion’ is that extended Rx is of no benefit and may be
harmful."
"Based on Infectious Diseases Society of America's Practice Guidelines, no
antibiotics recommended for "chronic" Lyme disease.”

To date, we have not found one ID specialist in Arizona willing to treat this
chronic infection. Most disturbingly, this occurs in highly-endemic regions,
as well.

One important thing that should be done outside this Hearing is for the
CDC to post the published treatment guidelines from ILADS on their
website, thereby providing informed consent to physicians and patients.
However, the CDC has refused to do this, despite many requests from the
Lyme community.
Lyme disease patients are beating their heads against this wall of denial.
Patients do not appreciate being told they are exaggerating, hysterical or
that women with chronic Lyme are merely suffering from depression. The
pain patients experience should not be flippantly compared to the aches
and pains of daily living.
The CDC published that cases are underreported by six to twelvefold; this
equates to millions of Lyme cases. If you multiply my experience by all
these people and read online the many tragic cases posted by Lyme
patients, you’ll grasp the magnitude of this epidemic.

Cancer patients have the right to choose harsh therapies that bring them
close to death’s door; yet, they are not prohibited from making those
healthcare choices.
However, the IDSA Guidelines wrench healthcare choices from the hands
of those who should be making those decisions -- the Lyme-treating
physicians and their patients, who have the right to choose the course of
therapy they think is most beneficial. Patients are not “vulnerable”; we are
informed consumers, informed about the pathogens we are infected with
and informed of our many treatment options.
I have provided each Review Panel member with a copy of this book by PJ
Langhoff entitled The Baker’s Dozen and the Lunatic Fringe. This is a wellresearched
book that contains evidence of the conflicts of interest.

The binders I sent you contain a History of the Lyme conflicts and a
significant series of letters between the IDSA and eight infectious disease
physicians, in which prior to the 2006 Guidelines publication, the ID docs
expressed their grave concerns about the Guideline process, the conflicts
of interest and the global science that was ignored.

Suffering Lyme patients are expecting you to carefully read this book, the
History and the series of letters, and take such information into
consideration prior to casting your votes on revision of the IDSA
Guidelines. The Baker's Dozen may be found at Amazon Books, and the
letters are posted on our website at leaparizona.com.
Patients have found egregious inconsistencies in the Guidelines,
research and statements from the most influential IDSA Guideline
authors, such as:
“These chronic neurologic abnormalities began months to years after the
onset of infection, sometimes after long periods of latency, as in
neurosyphilis…The likely reason for relapse is failure to eradicate the
spirochete…This last article is one of many studies that show continuing
symptoms are most likely due to persistence of the spirochete.”
And “We studied 17 patients who had presented with acute Lyme disease
and received prompt treatment with oral antibiotics, but in whom chronic
Lyme disease subsequently developed.”
Also “The Lyme disease spirochete, Borrelia burgdorferi, can be recovered
long after initial infection, even from antibiotic-treated patients, indicating
that it resists eradication by host defense mechanisms and antibiotics.”
So, despite the recommendations in their Guidelines to the contrary, the
most influential Guideline authors have published that Bb is not eradicated
after a short course of antibiotics and that chronic Lyme infection persists
post treatment.
On behalf of suffering patients, I must insist that the CDC and IDSA
Guideline authors and their other spokespersons stop making fraudulent
public statements that chronic Lyme infection does not exist, due to the fact
that the IDSA Guideline authors themselves proved years ago, that Bb is a
persistent chronic infection.

The denial of chronic Lyme infection in the IDSA Guidelines causes
patients to question Lyme vaccine development. Acknowledging chronic
Lyme infection would extend the time needed for vaccine clinical trials and
approval. Stating that chronic Lyme infection doesn’t exist and sweeping
suffering patients under the carpet is one way to avoid this problem.
Why the focus on a vaccine instead of expanded treatment protocols,
studies of congenital, blood transfusion and sexual transmission and
correction of the vaccine-friendly Dearborn two-tiered testing criteria?
The horrible truth -- is the secret that is being kept from the public, a secret
that the worldwide Lyme community already knows, because we’re living it
-- that Lyme disease is a very serious and complex infection, and a lot of
money is being made through the manipulation of this disease, through
research funds, patents for test kits and vaccine development, resulting in
the medical neglect of thousands, if not millions, of suffering people.
Chronic Lyme disease is a debilitating and tortuous infection. Patients are
bedridden, using walkers and wheelchairs, suffering relentless excruciating
pain and inhumane denial of medical care. This is a shameful travesty that
should shock our collective conscience and spur compassionate change.
Extensive revision of the Guidelines is necessary, and focus must be
redirected toward neglected patients. After all, for whom are the Guidelines
supposed to be written? Let’s make it for the patients this time!

In closing, we are here before government officials and attorneys,
scientists, physicians, advocates and patients around the world. May we
also remember that we are acting before our Creator, and honor the fact
that Honesty and Accountability are requirements for our well-being, as
individuals and a society.

Let us use the power of discernment to recognize improprieties and exhibit
the courage to take the uncomfortable, but necessary steps to correct
them. For the preservation of Truth and Integrity is paramount to our
standing, in this world and the next. Thank you.