CONGRESS ADDRESSES LYME DISEASE ISSUES

Monday 18 July 2011

CONGRESS ADDRESSES LYME DISEASE ISSUES

Congress Addresses Lyme Disease Issues

LDA Press Release

July 18, 2011. The all volunteer national Lyme Disease Association (LDA) is pleased to announce the introduction of a bill and proposed legislative actions that focus attention on the growing concerns surrounding Lyme and tick borne diseases.

Congressman Christopher Smith (R-NJ) introduced HR-2557, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011, on Friday, July 15, 2011, along with cosponsors Frank Wolf (VA), Tim Holden (PA), and Chris Gibson (NY).

Congressman Smith's bill, HR-2557, requires the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee to address a variety of important issues. The Committee will be charged with advising Federal agencies on priorities related to Lyme and tick-borne disease issues and will be composed of scientists, representatives from government agencies, health care providers and patient representatives. The Committee is charged with ensuring that a broad spectrum of scientific and stake-holder viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced.

Congressman Smith, Chairman of the Congressional Lyme Disease Caucus for the past seven years, has worked diligently to foster greater knowledge about tick-borne diseases over the years. Amongst his many Lyme-related endeavors, he hosted a Lyme and Tick-Borne Diseases Forum last summer in Wall Township, NJ, for health officials, medical professionals and the public, with over 300 people in attendance. Pat Smith of the LDA was one of the guest speakers.

Senator Richard Blumenthal (D-CT) has plans to highlight legislation to combat the spread of Lyme disease. He will meet with volunteer patient advocates from the Connecticut based Lyme disease group, Time for Lyme (TFL), an affiliate of the Lyme Disease Association, at the Connecticut Agricultural Experiment Station in New Haven on Monday, July 18, 2011.

Senator Blumenthal, who served an unprecedented five terms as Attorney General in Connecticut, is known for his efforts to make real and lasting difference in the lives of the people. He has been a long-time public defender of Lyme disease patients rights.

The Lyme Disease Association (LDA), an organization that seeks to eliminate tick-borne diseases by funding research, educating the public, and providing scientific conferences for doctors, is grateful to Congressman Smith, Senator Blumenthal, the bill cosponsors and staff for their enduring commitment to improve the health of countless patients suffering from Lyme and tick-borne diseases.

For more information please visit the LDA website www.LymeDiseaseAssociation.org

Contact Pat Smith, President, Lyme Disease Association, Inc. PO Box 1438, Jackson, NJ 08527. Toll free information line: 888-366-6611. Fax 732-938-7215.

Email president@LymeDiseaseAssociation.org

2 comments:

RitaA18 July 2011 at 07:36
Joanne,

Let's hope the bill gets passed for our American friends as we would all benefit from this.

"The Committee is charged with ensuring that a broad spectrum of scientific and stake-holder viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced".

It really is about time that ALL research related to Lyme disease and ALL viewpoints are taken into consideration.

This would definitely be a move in the right direction.

Rita A
Toronto
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Joanne18 July 2011 at 22:36
Hi Rita as you say it is about time all research and all views were taken into account, lets hope indeed that this bill is passed and that the blinders can start to come off Lyme everywhere in the World.
It is truly shocking what has been allowed to happen by such a few power crazy people.
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012