Gibson: “We need to do better” for Lyme disease
The House of Representatives has passed the 21st Century Cures Act, a sweeping medical research bill that makes specific provisions for Lyme disease.
New York Congressman Chris Gibson talks about Lyme disease in his one-minute speech asking Congress to approve the measure. Watch it below.
Tags : Rep. Chris Gibson
From vivacious to disability all because 12 doctors couldn’t figure out it was Lyme/Babesia. 9 months of antibiotics & so much better though not back to normal. Why is this allowed to happen? I can’t work now but before Lyme I took 5 sick days in 12 years…I loved my job & my life. Now I struggle with random symptoms that won’t go away. Though I have insurance. Out of packet cost so far is $36k. I didn’t do anything wrong except walk my dog in CT or maybe upstate. Chronic Lyme is devastating & that this fact is questioned is inhumane.
Same story here, Sonia. I was a personal trainer and bodybuilder at age 50 when I started having symptoms that I now know were Lyme. Surgery caused the bacteria to explode in my system to the point where I couldn’t leave my bed because of the horrible pain. After two years of treatment, I’m certainly better than when I started, but still cope with muscle and joint pain, extreme fatigue, twitching, etc. from babesia, bartonella and brucella that linger. Life as I knew it is over, maybe forever.
I was diagnosed with Lyme & Babesia. I became Disabled, nearly bedridden and after 3 1/2 years of antibiotics I am so much better although still not back to normal. Suffer from fatigue, arthritis, muscle aches, dizziness,etc. My 21 year old daughter has also been suffering with Lyme and Babesia and possibly other confections. She gets severe nausea, headaches, digestive problems, knee and muscle pain and is tremendously fatigued. I’m almost 60 so I can deal with the fact that I’ll most likely never be the same. But my daughter hasn’t even started her adult life yet!!! This illness is impeding her chances of being successful at college and entering the workforce. She has so many dreams. Research toward preventing LYME should’ve been done many years ago which would’ve cost less to society. Now it is so widespread that over 300,000 people are being injured by this disease according to the CDC and it is probably way more. And my out of pocket costs are approaching $100,000. We don’t even know how we got it. Never saw a tic although we did have an irregular red blotch appear on our arms. Thank goodness there is finally a bill getting through the Congress!!! We may finally learn how to cure this horrible disease.
Lyme disease has stolen my life. I worked very hard to get my B.S. degree and did well until Lyme stole everything. The torture in unbearable, but you cannot run away from it. Doctors say things like “I don’t believe Lyme exists,” fire you as a patient, “It is controversial, so I won’t treat it.” Doctors try to force psychiatric drugs on you, and continually try to give you prednisone which only makes you sicker. Lyme patients are the most abused class of people in the world today.
You mentioned Prednisone…Right before Lyme diagnosis, a reputable NYC neurologist diagnosed me with vestibular migraines & put me in hospital for a week where they pumped me with steroids every 6 hours. I came our sicker. After my Lyme diagnoses I wrote him why didn’t you rule out lyme before you did this as steroids suppress your immune & I needed the opposite, to build up my immune. His response blah blah. TY all for sharing u r stories. I’m getting my Hickman removed this week & my lyme doc & nurse & family & partner are all celebrating. I’ve been told to start living so that is what I will do. I have lingering symptoms & digestive issues but I’m all for living after 4 years of hell…lost gr8 job, relationship, selling my townhouse but new gifts came since then. I do have to stay on supplements etc to build up immune. We all need to stay positive.
29 medical professionals over 8 years & almost died. I had run every day for 38 years (65,000), and now can’t run a step; can’t work; not eligible for insurance (no, Obamacare doesn’t help US) – $80/day or $75,000 out of pocket so far. Will run out of things to sell soon, and then I’m done. All I did was work building landscapes in the Chicago area as a single mother to feed my children – an athlete in the prime of life – now sit in the window and try to focus. I’m doing great compared to 2 years ago though!
Yay Congressman Gibson!
I was bit in 1970, tic, rash, dad removed it, and still they think I’m faking it when I’m in an ambulance.
In CA it took until 2011 to get the correct diagnosis. No one asked me if I had ever been bit by a tic.
I’m alive. From eight years old until 49 it was my poor efforts and mental illness. After three years of treatment I applied for my passport…..
I want to travel, to live, to make friends and not collapse because I went out.
Everyone of you who shared information, raised awareness, YOU are the people who saved me. Now I can go for walks and tell people how I got better and how they can protect themselves and their loved ones.
THANK YOU, THANK YOU, THANK YOU
I was bit, and had the rash, in 1970. I was eight years old. I was diagnosed four years ago. In the 1990’s I figured out that Tetracycline would pick me up off of my death-bed. I got it from the pet store. Still no doctor caught it. I was in the wrong State. When asked if I had ever been to the NE U.S., or CT, I always said “No”. End of the inquiry that would have led to Lyme diagnosis. One doctor even said “It would have fit perfectly,” in a discouraged tone.
I never went there, but my parents traveled ALL THE TIME. I just helped wash picnic blankets.
Now, someone else does my laundry, and almost everything else that takes more that my 1 hour of light energy, if I’m lucky, per day. Life is still beautiful. As long as I can give someone encouragement or do research for someone who is struggling my life holds value.
I’m 53, and I’m still alive. I can walk, talk, see, sing and smile. Three years of treatment helped me through the times when I could not do any of those things. Whatever gets weak, gets the most attention. My hands going numb – I taught myself to type. They work, and that is how I found my answer, helping someone online with his illness.
Fight it! Live.