I realize this might not be the right forum for this post however, I know this is the one with the most traffic. I will post this in the other forums as well. I just felt this was pretty important and wanted to be sure it was seen by as many of the Florida people as possible. Sorry if I offend by placing it here.
Below is the information from an email that was sent to me by Dolores Claesson, a lyme advocate, who met this past Saturday with Mike Haridopolos the President of the Florida Senate. She asked that we pass this along to all Florida Lyme patients. Here it is:
Please e-mail or call and tell your story to Mike Haridopolos, President of the FL Senate. His wife by the way is a physician and we need to get her involved. I talked with him about lyme disease in the State of FL and we need to get him to enact legislation to allow our physicians to treat long term for lyme. Same legislation as CT and many other states are enacting....He needs to know how this has affected Floridians, native born and naturalized !! The Squeaky wheel gets the grease. His assistant also gave me his contact info and we need to let them know what is happening in FL...
We need to ensure that the people of FL will also get treatment paid for by insurance companies, Medicare, Medicaid, Medicaid needy share a cost, Kids care or any other company operating within our State.
I sent this to the senator, I hope it is good... not the best at this advocacy stuff, but I figured being honest was key.
Dear Senator Haridopolos, I hope this email finds you well. I wanted to share with you my Lyme disease story, to help encourage some policy change in Florida regarding treatment for this harrowing disease. I am relatively new to the diagnosis, but not new to the illness. Unfortunately, I have been sick since the age of 10 years old. I was raised in New York- a small suburb of NYC. Around age 10, 5th grade, I began having horrible pains in my legs and heels. I went to my pediatrician who reported they were growing pains. They continued to worsen throughout my childhood. At around age 14, on the way home from a soccer game, I developed a horrible mind blowing headache that made me vomit and need to lie down for hours. My mom was terrified as this was the time that people were warning about diseases spread by mosquitoes. I had a full workup for the headaches (which continued daily at that intensity for a year). Soonafter I developed GI problems- severe abdominal pain, nausea, diarrhea, and weight loss. I went from a health 140lb adolescent to 110lbs (at 5 foot 7). Nobody understood what was wrong with me, but I was sure it was something. I went to every doctor I could in NYC- the best GI's in the country. Nobody could figure it out. They put me on antidepressants- it must be related to anxiety, depression, trauma etc. That's what I was told. My father had died on September 11, 2001 in the terrorist attack and most of my doctors attributed my GI symptoms to the stress caused by that enormous loss.
I was lucky to persevere through college and my master's degree. During this time, I got much much sicker. I now had the headaches, the severe leg pain, the GI symptoms and a general flu like condition nearly everyday. I saw a rheumotologist who treated me with prednisone and other immunosuppresants for what he believed was a "non specific autoimmune disease." I got sicker. And sicker. Last March (2010), one evening, my leg pain and weakness got so severe that I could not walk. It terrified me - I was an athlete, a runner, what was going on? I went to a neurologist who ran a Lyme disease test which came back positive. I then got accepted to a PhD program in Clinical Psychology at USF and moved to Tampa, FL (not good timing).
I am now being treated by a doctor in CT while doing my doctoral work in psychology in FL. I fly there every few weeks to see the doctor. Everything else is done by phone. It is not easy. I spent a few days in the hospital... with the doctor in CT trying to stay in touch with the doctor's here. It is by no means ideal, but that is where I have to go to get long term treatment for this disease. It is also suspected that I have two of the coinfections of Lyme disease- Bartonella and Babesia.
I have a long road ahead of me. I have been in treatment for some time now and I am not better yet. I take strength and comfort in knowing that people do survive this disease and with long-term treatment they can go into remission. I hope that you have heard my story- I hope that others send you theirs. I know there is a lot of controversy surrounding Lyme disease diagnosis and treatment. I want nothing to do with it. I am too sick to deal with the controversy or politics of my disease. I just want to get better. We all do. And there are a lot of us. We are asking for your help in raising awareness about the need for long-term treatment of this disease. There is research out there that supports this notion- I am a scientist- I need the research to make me feel comfortable about what I am doing.
Please help us... our journey is tough enough with just the physical and emotional toll of a chronic disease. Thank you for reading.
Posts: 341 | From NY/FL | Registered: Apr 2010
| IP: Logged |