Florida Lyme Advocacy is a non-profit organization and affiliate of the national Lyme Disease Association, focused on providing Florida residents with timely and useful resources in areas of diagnosis, treatment and advocacy.
I founded this organization five years ago on the heels of being newly-diagnosed with later-stage, chronic Lyme disease. I also suffered from Bartonella. I saw 10 doctors over 2 ½ years before returning to New York to be accurately diagnosed with Lyme. My diagnosing physician referred me to a Florida-based Lyme expert for extensive IV and combination oral antibiotic and IV Ig therapy. He would guide my recovery for 6 years.
In the end, I lost my life savings and would spend what is now 9 years, to date, battling this insidious, debilitating disease. At the time of my diagnosis with Lyme, I had spent nearly two years bedridden and unable to walk most days. I once danced, sang and acted on Broadway and now thank God to walk, work and be alive, literally. Most of all, I thank God that the pain in my legs and feet have subsided enough to sleep and feel anything beyond dehumanizing pain.
Following diagnosis, I received years of both IV and oral antibiotic treatment before finding myself able to work full-time and function close to what I once knew as normalcy. Today, thanks to long-term treatment and the skilled care of a compassionate, knowledgeable and courageous physician, I am competing in long-distance races and taking back my life.
My case history
I had full-blown osteoporosis, low thyroid functioning, peripheral neuropathy, muscle twitching and weakness, and a wide range of visual disturbances that disappeared with effective Lyme disease treatment. In fact, my then endocrinologist didn't believe me when my bone density test reflected completely normal results just one year after initiation of Lyme disease treatment without any other medications geared toward osteoporosis.
I will never be cured and often have days with questionable functioning, pain and fatigue. But those days are minimal and the periods of poor functioning are diminishing. The dehumanizing pain I felt in every inch of my body and the humbling cognitive and other brain impairments I struggled with early in my disease have disappeared.
It is my hope that the information provided within this site and the links to other resources offered here, will empower you to make informed decisions should you suspect or know for sure that you are Lyme-infected.
If you are Lyme-infected, time is of the essence as early diagnosis is the key to the greatest hope of recovery. Nine years ago, I stood at the threshold of crippling pain in the form of peripheral neuropathy, cranial neuropathy, and involuntary tremors, night sweats and muscle spasms that stood to consume me.
Now I can work with minimal pain and give back to those just beginning their search for answers in facing suspected or newly-diagnosed Lyme disease.
Fighting The Myth “There is No Lyme in Florida ”
To date, there remains a great deal of misinformation and ignorance among the larger medical community and the public at large surrounding the incidence, prevalence, scope and potential of Lyme disease. The CDC and Public Health Department information on this disease is not complete and, in many areas, completely off base and inaccurate.
In Florida , there remains a prevailing myth that “There is no Lyme in Florida ”. The clinical records and more recent findings by tick experts in this state overwhelmingly prove that statement wrong. (See Interview with Dr. Kerry Clark of UNF under “About Ticks” on the home page.) In fact, we are now a leading state in the incidence of Lyme-infection in clinical records. The CDC simply won't count us.
For this reason, it is of the utmost importance that you know how to access more accurate, specialized diagnostic tests, Lyme literate physicians with the clinical experience and hands on knowledge of the scope of Lyme disease and its co-infections, as well as reputable work from world leading tick experts within the state of Florida.
In my work as an advocate for the Florida Lyme disease patient community, I had the distinct privilege to co-draft Florida 's first-ever Lyme disease / insurance specific legislation during the 2004-2005 legislative session. This brought me face to face with the offices of the Attorney General, Insurance Commissioner, Consumer Advocate, Governor's Health and Human Services Committee, and many house representatives and senators, in general. Additionally, I met with the state epidemiologist and many others within the Florida state Public Health Department.
What I found was that agencies such as the CDC, Public Health Department, and state level officials who should be our greatest sources of accurate information and protection from emerging public health epidemics knew little to nothing about the most recent developments in areas of research, diagnosis and treatment of Lyme and its co-infections. Even more disarming was my discovery of the political history of Lyme disease. When a possible Lyme vaccine promising patents and profits to drug companies failed years ago, so too disappeared much of the government's and “corporate medicine's” interest in aggressive research and accurate education of the public about this disease.
To date, the most aggressive research and clinical efforts continue to be realized by a small sector of the medical community who have dedicated their careers to unraveling this terrible disease that is disabling increasing numbers of Americans in epidemic fashion.
My Work
No one I met in legislative, medical or public health venues in Florida at that time knew anything about ILADS (International Lyme and Associated Diseases Society), IGenex Laboratories (the world leading laboratory in tick-borne disease diagnostic testing); let alone the many studies and subsequent findings by tick experts such Dr. James Oliver and Dr. Kerry Clark. Studies performed right here in Florida.
I have also had the honor to accompany a leading Lyme literate Florida-based physician to one of the ILADS (International Lyme and Associated Diseases Society) national conventions where I heard from world leading experts in research, treatment, tick studies, microbiology and holistic options in living with this disease.
This site serves as a resource tool for patients seeking accurate information surrounding diagnosis, treatment and fact vs. fiction specific to Lyme disease and its co-infections. My goal is to increase awareness of the epidemic incidence of this disease, worldwide, including Florida; as well as to equip patients and the larger public with accurate and timely information that will save future victims of Lyme infection from falling prey to the prevailing ignorance of mainstream physicians, the politics behind CDC and Public Health misinformation, and the inevitable and resulting years and multiple doctors and mis-diagnoses that most Lyme disease patients experience as a rule.
We also aim to provide the most recent, Florida-specific, tick research findings from world leading tick expert, Dr. Kerry Clark, who has tirelessly worked to capture the true presence of Lyme-infected ticks and hosts of this disease to empower the public in avoiding exposure to this disease.
Lyme disease patients face the added obstacle of an insurance industry well aware of the often necessary long-term treatment necessary to successfully battle particularly later-stage and chronic Lyme disease. Recognizing the huge costs related to drugs that have proven most effective in recent years, insurers continue to change their policies to restrict dosage, frequency and classes of drugs physicians are allowed to prescribe their patients, overriding the clinical expertise of the treating physician and stripping Lyme disease patients of their right to consider all the options; not just those most profitable to insurance companies.
Newer, emerging therapies incorporating drugs originally created for other conditions that show recovery in Lyme disease patients are being denied as “off label” use. In essence, Lyme disease patients have been and continue to be denied their right to the legal standard of care.
For more in-depth explanation of the legal and ethical questions being raised specific to Lyme disease treatment, insurance coverage and medical information surrounding this disease, visit www.lymedisease.org , and under “About CALDA” / “Articles”, purchase a copy of the Medicolegal Assessment by Dr. Ralph Stricker and Lorraine Johnson.
Key information on diagnosis, treatment, and the political history of Lyme disease is also available in the Update which can be purchased online from the national Lyme Disease Association at www.lymediseaseassociation.org.
I hope you will take the time to educate yourself, your families and other loved ones through this site and the useful links provided herein. I encourage you to contact me to:
* Receive more information on Lyme-related topics and questions
* Buy a national Lyme Disease Association running shirt to run for, walk for or wear the green in support of our national leader in advocacy
* File your Florida patient survey to be counted
* Join our advocacy efforts in Florida and at the federal level
I welcome your feedback, suggestions and contributions of any timely, new finds related to the diagnosis of, treatment of, and advocacy on behalf of Lyme disease patients. Thank you from the bottom of my heart to the Pat Smith and national Lyme Disease Association for making this web site and my advocacy work possible. Thanks also to CALDA members, ILADS physicians, Dr. Kerry Clark and fellow Lyme patients, nationwide, for your support, courage, and tireless dedication to uncover and destroy this epidemic once and for all. It is Time for Lyme.
Sincerely,
Lori Hoerl, Founder and Director
Florida Lyme Advocacy