PRESS RELEASE For Immediate Release: May 11, 2007 Contact: Tina J. Garcia, L

[Guest guest]

PRESS RELEASE

 

For Immediate Release: May 11, 2007

Contact: Tina J. Garcia, L.E.A.P. Arizona, Lyme Education Awareness Program

Contact Telephone: 480-570-5178

 

Lyme Patient Advocate Lights Torch for Patients and Physicians on 1600 Mile

Benefit Road Trip

 

L.E.A.P. Arizona, Lyme Education Awareness Program, will be lighting a torch

in honor of Lyme patients who are forced to pay for costly treatment

themselves and two physicians who are being prosecuted for Lyme

treatment-related

issues. On Monday, May 14, 2007 at 10:00 a.m. Tina Garcia, founder of L.E.A.P.

Arizona, will be lighting the torch across the street from the Centers for

Disease Control and Prevention (CDC) at 1600 Clifton Road in Atlanta,

Georgia. Garcia will keep the torch lit for 1600 mile drive from Atlanta to

Phoenix, Arizona.

 

 

Lyme disease can develop into a chronic debilitating infection if not

treated in its early stages. Chronic Lyme disease patients can experience

unrelenting fatigue, debilitating cognitive dysfunction, excruciating

musculoskeletal

pain and cardiac abnormalities. Diagnosis and treatment are not easily

obtained, because more effective standards of care need to be provided to

physicians.

 

Two standards of care exist for the treatment of chronic Lyme disease.

ILADS, International Lyme and Associated Diseases Society, has published

treatment guidelines that allow for extended antibiotic therapy for chronic

infection

along with supplements for immune system support.

 

 

IDSA, the Infectious Diseases Society of America, has published treatment

guidelines that recommend only short courses of antibiotic therapy and downplay

the existence of chronic infection.

 

The IDSA 2006 updated treatment guidelines are currently under investigation

by Connecticut Attorney General Richard Blumenthal for possible antitrust

violations. Insurance companies are utilizing the IDSA treatment guidelines in

their determination of benefits for their insured. After short-term

benefits are abruptly cut off for patients, these extremely-ill patients are

forced

to pay for their costly intravenous antibiotics out-of-pocket. This is an

extreme financial burden for parents who may not only suffer from chronic Lyme

disease themselves, but also have children who have Lyme and are too sick to

attend school.

 

 

 

" This is a spur of the moment benefit road trip for patients and

physicians, " said Garcia, " because my husband and I happen to be in Atlanta at

this

time. I chose the CDC, because I have been writing letters to Atlanta CDC Julie Gerberding and Dr. Lyle Petersen in Ft. Collins, Colorado for

two

years now. I have continually urged them to post the ILADS guidelines on the

CDC website, in order to provide informed consent to physicians and patients

who look to the CDC website for information on Lyme disease treatment.

 

" Even despite efforts by Senator John McCain's office on my behalf,

unfortunately Dr. Gerberding and Dr. Petersen continue to respond to us with

pacifying language and what I perceive as feigned concern for the plight of

chronic

Lyme disease patients, more and more of whom are becoming disabled. My

challenge to the CDC is for them to show the concern they claim to have by

posting

the ILADS guidelines on their website to provide informed consent, as

required by American Medical Association (AMA) informed consent guidelines.

 

" What is really astonishing is that the CDC has published research that

proves the intracellular nature of Borrelia burgdorferi and its ability to

evade

the immune system, which are causes of chronic infection. Yet, they are

still flatly refusing to provide the ILADS treatment guidelines on their

website

in preference for the IDSA treatment guidelines, that virtually deny the

possibility of chronic infection from an intracellular organism that has the

ability to remain undetected by the immune system for long periods of time.

This

is most likely among the reasons patients remain ill with periods of

remission and relapse and need long-term antibiotic therapy, similar to chronic

infection experienced by tuberculosis patients. Why does the CDC make the

claim

that the IDSA treatment guidelines are the best that science has to offer,

when their own science-based research contradicts the IDSA treatment

guidelines? "

 

Garcia says that she has been on intramuscular and oral antibiotics on and

off now for two and a half years. It was recommended that she have

intravenous antibiotics, but due to financial reasons, she was unable to get

that

treatment. Although she still suffers from cognitive dysfunction and has

migratory pain in her joints and spine, she claims extended antibiotics have

significantly improved her quality of life, a very important point that she

says the

CDC and IDSA are not taking into consideration. " If I had been able to get

the appropriate treatment a long time ago, and not dismissed by physicians who

adhere to the IDSA treatment guidelines on the CDC website, I believe I

would not have suffered so much and lost my previous capacity to live a normal

life. "

 

The majority of Lyme disease patients, along with numerous Lyme patient

advocacy groups, claim that long-term courses of antibiotic treatment are needed

to overcome the devastating effects of Borrelia burgdorferi, the bacterium

that causes chronic Lyme disease, also known as Borreliosis. Borrelia

infections are most-often transmitted by tick bite, but the bacterium has been

isolated in male and female body fluids, frozen blood and mosquitoes. Some

patients have experience with and believe that Bb can be transmitted in utero

and

through breast milk. Unfortunately, adequate research has not been performed

to prove transmission via these methods, and the possibility of these methods

of transmission is being ignored.

 

Garcia claims, " It appears that research funds are continually granted to a

select few individuals. Some of these individuals are the authors of the

2000 and 2006 IDSA treatment guidelines. Potential conflicts of interest exist

due to the relationships these individuals have with pharmaceutical Lyme

disease vaccine development, insurance company expert witness testimony and

patents related to test kits and the Borrelia burgdorferi bacterium itself .

For

this reason I am not in support of additional federal funding until such

research funds are granted for the purpose of better defining chronic Lyme

disease, benefits of extended antibiotic treatment (beyond 90 days), testing

and

modes of transmission.

 

" What I'd really like to see is a Senate hearing requiring these individuals

to disclose their financial ties and reasons for contradicting their own

research in the 2006 IDSA guidelines, " Garcia proposes. " A couple of these

individuals have testified against Lyme-treating physicians in medical board

prosecutions. We want to assist two of these physicians in their battle to

retain their licenses and continue treating Lyme disease patients. "

 

L.E.A.P. Arizona is a 501©3 non-profit public charity that provides

financial assistance to adults and children suffering from tick-borne

infections.

Patient assistance is not limited to those in Arizona, but is provided to

patients nationwide.

 

Pledges per mile for the 1600-mile 2007 Lyme Patient/Physician Benefit Road

Trip are being accepted on L.E.A.P.'s website at _www.leaparizona.com_

(http://www.leaparizona.com/) and by mail at the address below.

Please pledge your tax-deductible donation to help Lyme patients obtain

desperately-needed treatment!

 

 

L.E.A.P. Arizona

Lyme Education Awareness Program

_www.leaparizona.com_ (http://www.leaparizona.com/)

P.O. Box 2654

Mesa, Arizona 85214-2654

480-219-6869 Phone

480-830-2788 Fax

 

The following organizations/individuals support the purpose of the 2007 Lyme

Patient/Physician Benefit Road Trip:

 

 

C.H.O.I.C.E. (Consumers of Healthcare Options with Independence Choice and

Experience)

_CHOICEforHEALTH_

(http://us.f334.mail./ym/Compose?To=CHOICEforHEALTH (AT) aol (DOT) com)

 

LifeLyme

_lifelyme_ (lifelyme)

 

Gettysburg Lyme Support Group

_fightlyme_ (fightlyme)

 

Ticked Off and Fed Up (TOFU) a 501©3

_fightlyme_ (fightlyme)

 

The Greater Hartford Lyme Disease Support and Action Group

_www.ctlymedisease.org_ (http://www.ctlymedisease.org/)

 

Linda Heming

Lyme Advocate/Activist

_Lymeangl_ (Lymeangl)

 

Jerry Leonard

Lyme Advocate/Activist

_jerryleonard999_ (jerryleonard999)

 

 

 

 

 

 

 

 

 

 

 

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