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Lyme patients abandoned: Letters from “Under Our Skin”

Posted Nov 16 2009 10:01pm


We receive many letters from Lyme sufferers and occasionally we like to share them with the rest of the community. Frustrated by the impossibility of getting help, many reach out to their legislators, and some to the President of the United States. Here’s one story that recently came our way and was particularly poignant:

August 18, 2009

Dear President Obama,

I am 39-years old and writing to you about healthcare reform. I would like to share my story with you in the hopes of putting another human face to the healthcare crisis in America. I am a single woman who was very athletic, outgoing and involved in my community, family, church, career, and friends before becoming debilitated with late stage Lyme disease.

I am three chapters of my dissertation short of a second part of a double PhD in Psychology with areas of focus in Neurology and Forensics. I have a Masters degree in Psychology with the same areas of specialty, and an Addictions Certification which is the accumulation of 6,000 supervised work hours, ten graduated level courses and a State Board exam. I started working in the field of psychology at age 18 and continued until I was 33 years old when I could no longer work due to the level of debility from Lyme disease.

I was diagnosed in 1994 with Lyme disease, given a course of antibiotics and told I was cured. I was not cured and my health continued to decline.

I went from doctor to doctor searching for answers. After years and years of misdiagnoses, I was finally properly diagnosed in 2005 with late stage Neurological Lyme disease with many co-infections. Since that time I have been searching for a doctor who will take me on as a patient while the Lyme and other co-infections wreaked havoc on my body. I am not able to perform even the simplest of day-to-day tasks due to the chronic and severe level of physical pain.

I lost my health insurance and have not been able to get more due to pre-existing conditions. My finances are depleted from years of misdiagnoses and improper treatments. I have not been able to get the help I need due to financial restraints and a lack of knowledge about late stage Lyme disease here in Florida.

I now have a team of doctors who are willing to take my case, but the team of doctors resides on the West Coast and I live in Florida. All of this treatment is out of pocket. I do not have insurance as I have either been told I am ‘uninsurable’ or that the premiums will be so high I could not afford it.

I would like to know what your healthcare reform will do to help someone like me?

What can we do in this nation so people will not have to suffer as I am? What I am suffering could have been avoided if given the proper diagnoses and treatment in a timely manner. I am laying here literally dying a very slow, agonizing death, and without the medical help I need. I am a young woman, and have been told by many organizations that if I had a family of my own, if I was older, if I was a child, or if I was a minority . . . then resources would be available to me.

How, in a Nation of equality, is such an injustice permitted?

I understand that some of your staff has viewed the groundbreaking documentary film, UNDER OUR SKIN. This film depicts the growing epidemic and political controversy surrounding Chronic/Late Stage Lyme disease as well as the grave nature of the disease. This film has been instrumental in helping Lyme disease sufferers to gain understanding from family, friends, and the medical community as a whole. UNDER OUR SKIN helps to clear up the many questions related to timely diagnoses and effective treatment of Lyme disease. In light of your healthcare reform initiatives, I am begging you to personally watch this film and take action. Lyme disease is an epidemic of proportions unparalleled to most diseases that have swept this nation and the world. Please take a personal interest in Lyme disease and in using the film to help educate the American people about this widely misunderstood disease.

Please help me save my life and please help others in similar situations to save their lives. Do not allow us to continue to be a population who falls through the cracks.

Thank you for your time in reading my letter. I hope and pray with all of my heart that you will consider all I have shared and allow it to sink in with empathic understanding, following with some action taken to help.

Respectfully Yours,

Elizabeth C.
Boca Raton, FL

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