If you remember my letter from last year then you remember I was a third degree black belt and owned a successful martial arts school. My quick slide downward that left me so disabled I couldn't walk and at times couldn't even use my hands to do simple things like feed myself, was nothing less then scary. The doctor's I saw here in Maine said things to me that should be deemed unethical at the very least. For example, a neurologist told me I couldn't walk because I was sitting around on the couch to much and I need to get up and do more. When I attempted to explain my vertigo to this woman she told me that the room felt like it was moving because I was moving. (I was shaking at the time) She told me to stop moving and the room wouldn't spin anymore. My favorite was the ER doctor, who, while I was in the middle of a partial seizure, told me I wasn't having a seizure and to just relax. I, like so many other's in our state, no longer utilize the emergency department or specialists due to the blatant mistreatment we receive.
Here I am, a year later, and although I have a long way to go in treatment, I am markedly better! I can walk again, I can hold a conversation, I rarely have a seizure, I am now able to control the movements in my arms and hands, I can drive, go to stores, attend church and even help teach taekwondo on a limited basis. I have improved so much because a doctor out of state listened to me, and was able to properly diagnosis me. I have been on antibiotics for a year and am continuing to improve.
Every state in New England, and now also New York, has laws in place to protect doctor's who treat lyme based on the ILADS guidelines instead of the outdated but insurance recognized IDSA guidelines. Maine currently has no law to protect our doctors. This forces those of us who are lucky enough to even realize we might have lyme, to leave the state if we want the best treatment available. The doctor's in Maine who are brave enough to treat are limited in how aggressive they can make treatment. They are unable to prescribe all of the medicines available because they don't want to draw attention to themselves and have insurance companies file a complaint with the Medical Board.
I, over the past year, have met many doctor's in our state who have privately thanked me for advocating for change. They know lyme disease is a major medical problem but are unwilling to say anything publicly out of fear of retribution from either their colleagues or from the licencing board. If they could safely treat based on their clinical judgment in the state of Maine they would probably do so!
We are left with limited resources for those in our state who are sick. I get weekly messages from people I don't even know, asking where they can go to be evaluated and treated if necessary. I am unable to be of much help because the answer is so overwhelming and down right difficult to soak in. The truth is, if you want help, the best help is over the state line and it will cost you out of pocket to be seen.
Last year I was angry, but this year I am an angry mama bear ready to roar. Over this year I learned that lyme can be past during pregnancy. Both of my daughter's have had long term chronic health issues. It didn't take much for me to put two and two together. I had them evaluated and tested, the tests came back with a roaring positive for both of them. After all these years of people not believing them when they complained of ailments, being misdiagnosed and labeled, it appears they were sick all along. One of my daughters is still a minor, so I live under the constant worry that if she has to go to the ER I will be given trouble for having her being treated for a disease Maine Doctor's say doesn't exist. Funny thing is, her lyme doctor lives in the State of Maine but practices medicine over the border in New Hampshire so she can freely treat lyme patients without fear of retribution. My older daughter, who is eighteen, just recently saw a specialist for something not lyme related who was upfront and told her "she didn't believe in lyme.......some call it lyme, I call it anxiety", and also made the comment, "well when that doctor in DC stops pushing so many chemicals into your body......". This ISN''T ok!
It has been said that doctor's who treat lyme based on their best clinical judgement are either quacks or are trying to profit off sick patients. I am sure there are some unethical doctor's out there. The doctor's we have had the privilege to work with have all been compassionate and obviously heart broken over how this disease is ruining lives. Many doctor's who treat chronic lyme do so because they once discovered they were sick because of lyme disease. Once they got better they quickly began treating lyme patients themselves. My doctor was one of these, once sick, doctors and she works harder on my behalf then I could ever financially compensate her for. She has brought me back from the edge of death and continues to make herself always available as I finish this journey I am on.
Patients in the State of Maine shouldn't have to rely on an underground network to get information about doctor's who treat lyme. Doctor's should have the right to use the degree they earned to treat patients based on the patients specific symptoms and physical makeup, not the cookie cutter recommendation that leaves no room for clinical judgement.
I implore you to strongly support a bill that will be introduced before January 2 that would ask to have doctor's protected when choosing to treat lyme as a chronic condition.
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