NEWS: Sen. Blumenthal of CT renews push for federal Lyme legislation
He’ll hold a hearing on the bill August 30 in Stamford, CT.
US Senator Richard Blumenthal, of Connecticut, is calling for aggressive federal action against Lyme disease. In a press conference on July 27, he said he will push for passage of the Lyme and Tick-Borne Disease Prevention, Education and Research Act.
The bill would provide resources for fighting the disease as well as form a national Lyme Advisory Committee, which would include patient representatives.
“Patients have been unrepresented and unreflected in the process and they have a powerful story. They are the ones who have suffered,” Blumenthal said.
Blumenthal will hold a Senate field hearing on the proposed bill in Stamford, CT, on August 30.
- July 28, 2012 at 8:10 am
Thank you for fighting this battle with us. It has been a tough year for me. After battling this disease for 37 years, I almost died in March from it taking over my body. However, thanks to one of the best Lyme Literate doctors in the states, who is practicing in D.C., I’m alive today. However, twelve of my friends have past away so far this year from this disease because they couldn’t afford the treatments. Forcing people to spend $4,000+ a month to live is insane. My family shouldn’t have to sacrific as much as they do for a disease that should be covered by insurance. I can’t understand why you can get an antibiotic prescribed for more than a year for acne, but a person who is suffering from a horrific disease that is killing people left and right is refused treatment. There is something wrong with this!
- July 28, 2012 at 7:40 pm
Sensitive and reliable diagnosis of Lyme borreliosis at early stage of the disease or in its chronic phase, if existent, should be based on nested PCR and direct DNA sequencing. It has been available in New Haven County for patient care. Those interested in the science of this issue may open the following links.
- August 10, 2012 at 9:37 am
Thank You sincerely Senator Blumenthal for you faithfulness, diligence and integrity in standing up for Lyme disease and the ones who suffer with it. You are an amazing man and I pray that God will watch over you for the job you are trying to do for all of us who deal with Lyme disease.
- August 14, 2012 at 8:49 pm
Senator Blumenthal Thank You for all of your support! It is a godsend to know we have you fighting for us. To live with this terrible illness on a daily basis is so very hard on not only the person effected with Lyme, but it effects every one in our life!! Please continue your work!
- August 14, 2012 at 9:31 pm
I am one of the few people who were able to be treated by a LLMD who was well educated on Lyme Disease. The importance of proper treatment as soon as possible is a major key to helping the suffering stop for those who are not as lucky as I was. I went misdiagnosed for over 2 years and had been told by several so called “medical professionals” that I did not have Lyme but something else. Due to poor testing methods and the IDSA guidelines ( which are wrong!) I suffered dearly. I became bedridden, lost my job and was unable to function as a human being. This is a multifaceted disease that minics MS, Lupus,CFS, Arthritis,ALS and many others. People are told they have these illnesses and are treated for them which they do not have just to go on suffering even more on medications that will not help eradicate Lyme. How can someone be seen by 2 teams of neurologists, 14 specialists, and 3 primary care physicians and MORE THEN 10 EMERGENCY ROOM VISITS in less then a year in 4 different hospitals in 3 different counties and be told that they do not know what the problem is? That’s what happened to me! I couldn’t drive, talk or walk. I was told at one point that it was just ALL in my head and I was going through the change of life! The REAL problem here is that doctors are NOT educated enough about this disease. ILADS has done the research. They know the complexity of Lyme and the coinfections that accompany it. Without the help of a doctor who knows how to treat properly…..MILLIONS of people will remain sick and become disabled for life. Unable to to provide for their families and have to loose their homes and livelyhood. Long term antibiotics saved me. Alternative methods with the antibiotics turned my life around. I am forever grateful to have been able to seen and treated by a LLMD (Lyme Literate Medical Doctor) I had to do my own research over time to learn of all the politics involved around this disease. It’s time for a change! If we all continue down the path we are on now with the medical professionals listening to the IDSA on how to treat Lyme…..we are in big trouble! Every doctor should have to take a course on Lyme every year to re educate themselves about the number one vector borne disease in the world!!!!!!! Most people don’t want to hear about Lyme til they or someone they love are stricken with it. Mandatory education is needed!
- August 15, 2012 at 6:02 pm
Thank you for all of your work Senator Blumenthal, and for increasing awareness of this illness and voicing the concerns of those of us who are too sick to do so!
I have had Lyme, Babesia, Bartonella, and possibly Erlichia for 32 years. I was mis-diagnosed for 20 years, and unknowingly passed on the infections to my daughter. She in turn passed on the infections to her son. She is now 27 years old and in 24 hr. care, unable to care for herself. He is 5 and just now starting treatment; the doctors refused to treat him at birth and kept telling me he didn’t have it. Indeed he does; primarily a neuropsychiatric presentation, but physical symptoms as well. My hope is that he can get the appropriate help (a LLMD in a neighboring state is treating him) and have a much better outcome than his biological mother.
I was able to work for 16.5 years but now am totally disabled and facing bankruptcy due to all the medical bills. Once again, thank you for your work.
- August 15, 2012 at 9:15 pm
POLITICS? This is the problem with this disease. It is money related, and this seems to be the way all of our government has become. Money hungry greedy people.
If you truly want to help, then clean out the greed. I have suffered for years and really, unless you get bitten, you do not have any idea of how it feels to have an indefinite flu. Next time you get the flu and are hanging over the toilet aching and vomiting, think about Lyme disease and realize there is no end to the suffering. You will only have the flu for maybe a few days… That is when the light for you will go on. Vomiting once a week, joints so stiff you can’t get up, fatigue, forgetfulness and otherwise very intelligent and the list continues. We don’t need education (and a big dump for money within another think tank). Government always likes to set up agencies within agencies and nothing ever is accomplished. This idea always leaves another place to hide some more tax dollars so that a few people can make a few hundred thousand (the parent agency gets a ton of grant and tax money to just look at what they’re doing from afar). The citizens of this great country have had enough of the dump tank ideas….We need an investigation and the people behind the medical ethics of this. They need to be given the same disease they’ve inflicted us with and denied treatment. Or more importantly tried for murder.
I find it a bit difficult to understand how education keeps coming up. We’re all very aware, and it compares only to the attack on the community with the Syphilis of our past history. It is identical and we need to find out who was originally behind letting this catch on to so many. When my doctor released me after testing positive (he delivered my 29 year old son), he said, “you know the politics of this disease, “THEY THINK THIS IS BETTER FOR ALL OF US”)? What’s better? That we all pass away so the cost of medical care is cheaper?
Good luck with your political choice to try and make this disease a priority. I think it’s a bit late and irresponsible to not make the people accountable for not allowing treatment for chronic Lyme (including the insurance companies who’ve contributed so much money to our political system. This has been going on since the 70’s. Why now, because so many have it, only second to HIV? Disgusting DEBILITATING EPIDEMIC…
- August 16, 2012 at 6:03 am
Politics and a vested interest by Insurance Companies. We need not go any further. And what about the LLMD’s turning patients away that can not pay for their treatments? With all that said, that is why this disease is not taken seriously! After thousands of dollars and most of my 401K gone, I will need treatment forever. Soon I will not be able to afford the treatment and my LLMD will just put my case file away and wish me well. Heartless as it may seem, it will and has happened.
- August 16, 2012 at 8:16 am
I have had lyme for about 25 years. I was told I have MS by about 7 neurologists, although (fortunately) one told me that it was primary progressive MS and there was no drug for that type. The others did not even tell me that there are different types of MS, and that there is currently no FDA approved drug for the type I may have. I just started taking the antibiotic Ceftin, and that is giving me relief for my arthritis, insomnia, and brain fog, but I don’t know if I will ever be able to walk normally again. I had to change jobs, because I can’t walk or stand easily anymore. It took me 7 years to find a doctor who could help, because some doctors who wisely did not follow the IDSA guidelines lost their medical licenses. As a result there are long waiting lines for the few doctors who do treat lyme with success.
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