Here are some great articles and supportive information on the Lyme Disease Protest at Rep. Frank Pallone's Office in New Jersey. The original article was published in the North/South Brunswick (NJ)Sentinel, due to the efforts of the local LymeQuest Support Group.
I wrote to Great Media Newspapers and to Jennifer Amato, the author, thanked them and asked them to publish it in our edition called the Tri-Town News. They also included a "personal" side to the original story.
Please take the time to thank Greater Media and Jennifer Amato (Links below) for publishing and writing these articles. They are listening to their readers!!!! and responding. These articles and the exposure they are bringing are so important to all of us.
Most importantly, they are exposing Frank Pallone and his decision to side with the criminally investigated IDSA to the general population, who most likely are not aware of their elected official's alignment with this corrupt organization.
Keep the positive letters flowing!!! They are making an impact!!!
Below are the links to the stories and Jennifer Amato's response to my letter.
Thank you so much for your e-mail. I have never written an article that has gotten so much positive feedback and I am very thankful. The situation is horrible for these patients and to hear their stories is heartbreaking. I just hope the people who have read my article contact Congressman Pallone and put pressure on the governing body to move forward with this bill. Because it is only for education and research so there should be no obstacles, in my opinion. But thank you very much for your kind words.
I hope I have posted this all correctly. I am a little rusty so any help is appreciated.
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copying all 3 articles here since they are in TIMESNEWROMAN THATRUNSALLWORDSTOGETHER FOR ME!
1st link ***********
Time is ticking away for Lyme bill to be heard Those affected by the disease angered over congressman's inaction
BY JENNIFER AMATO Staff Writer
Adults and their children who are sick with Lyme disease are calling on New Jersey Rep. Frank Pallone (D-6th District), chair of the Health Subcommittee of the House Energy and Commerce Committee, to move forward with a congressional hearing for a Lyme disease research bill.
Protesters marched in front of the Long Branch office of Rep. Frank Pallone recently, requesting that a Lyme disease research bill be heard before the House of Representatives.
However, despite his initial support of the bill, Pallone has recently announced he is holding off on the bill because of a controversy over whether Lyme is chronic.
This has deeply angered and frustrated patients, who say that HR741: Lyme & Tick-borne Disease Prevention, Education and Research Act of 2007 - which if passed would appropriate $100 million over a course of five years for tick-borne disease research - is a much-needed legislation in the battle against the pain and suffering that Lyme disease causes.
"We have this massive population of Lyme disease patients and tickborne disease patients that are the new AIDS of our future generation," said Jeannine Phillips, chairwoman of the LymeQuest Support Group and Advocacy Project, New Brunswick.
The issue dates back to January 2007, when Rep. Christopher Smith introduced HR741 into the House of Representatives.
The bill was identical to the previous year's House bill HR3427, which had died. Then, the Senate version, S1708, was introduced in June 2007.
The bill has since been sitting in the House Committee on Energy & Commerce Health Subcommittee and the Health, Education, Labor & Pensions (HELP) Committee of the Senate.
The bill must be heard by the end of June 2008 before summer recess because the bill will die Dec. 31, and there must be sufficient time to have it go through all the appropriate legal stages.
Therefore, patients are urging Pallone to move the bill forward.
However, a major roadblock has been the control of diagnosis, treatment and insurance reimbursement by the Infectious Diseases Society of America (IDSA), according to Pat Smith, president of the national Lyme Disease Association (LDA), which has an office in Jackson, and former vice president of the International Lyme andAssociated Diseases Society.
In 2000, the IDSA issued a set of treatment guidelines, and in an October 2006 update, the association stated that Lyme was easily treated with a single (and occasionally a second) course of antibiotics and was not as severe as patients made it seem.
Smith said physicians' treatments that had proved to be effective became prohibited, and patients were being steered away from physicians by their insurance companies.
Doctors who were thought not to follow IDSA standards often would not treat their patients for Lyme, because they were fearful of repercussions.
The IDSA believed that most patients who were thought to have chronic Lyme disease actually had other medical problems.
"Every year we have more and more [patients] and we have less physicians [willing to treat them]," said Smith, who has had the disease for 22 years.
Eighteen months ago, Connecticut Attorney General Richard Blumenthal - from the state that gave Lyme disease its name after a cluster of patients was documented in the mid-'70s - launched an investigation into the IDSA because of allegations by Lyme disease support groups about unethical practices by the IDSA.
On May 1 of this year, Blumenthal announced an agreement stating that the IDSA guidelines were developed by a panel that had conflicts of interest.
These guidelines stated that Lyme is not a chronic illness and urged against long-term antibiotics as well as alternative or supplemental treatments.
Blumenthal found that members of the IDSA panel had affiliations with testing, vaccine and product manufacturers, and these conflicts undercut the credibility of the panel that developed the guidelines.
Blumenthal stipulated that an entirely new review panel was needed and that it must examine all of the previous guidelines in a scientific and public manner.
He said there must be a line-by-line consideration of the rules, with 75 percent ratification by members of the new panel.
"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists.
The IDSA's guidelines panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science," Blumenthal said in a press release.
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests - in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies - to exclude divergent medical evidence and opinion.
In today's health care system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.
As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards," he added.
In the meantime, over the past six to eight months, the LDA set up a Lyme caucus briefing in front of both House and Senate staffers.
However, after the New England Journal published the IDSA guidelines, Smith said Sen. Edward Kennedy, the chair of the HELP Committee, and Pallone - who Smith and Phillips claim personally assured the bill would be heard - did not post the bill.
After a grassroots organization, Lyme Rights, rallied in front of Pallone's office, LymeQuest went to his New Brunswick office April 24 to do the same.
"I still believed if he had the science in front of him ... and we could plead our case for our children and for our family members who are so deathly sick, that he would have had no choice but to move the bill to a hearing," Smith said.
The members of advocacy groups then worked against an IDSA rally on May 2, logging in 2,000 calls in one day to the government.
They were angered because they said that as soon as IDSA representatives visited Pallone's committee, Pallone backed down from the bill.
"Not only is that unacceptable, that is inappropriate. Here is an elected official endorsing a society that was just investigated for 18 months," Smith said. "Congressman Pallone knew this. The patients are outraged."
Phillips, of LymeQuest, said that the Lyme bill has nothing to do with the IDSA guidelines/review panel, which is why the Lyme activist groups are puzzled about why Pallone will not support the bill.
The bill is merely going toward education and research, Phillips said.
Pallone issued a statement in response to a May 7 protest in front of his Long Branch office,
saying that "conflicting opinions exist on the diagnosis of Lyme disease" and that "at a time when significant disagreements exist on treatment, I am hopeful that the panel's final recommendations will give us guidance on how best to proceed so that we can help all of those suffering from Lyme disease."
He said he is currently working with the Centers for Disease Control and Prevention to evaluate current programs on prevention, testing and treatment for Lyme.
Also, in a letter addressed to Blumenthal, Pallone said that he does recognize the high incidence rate in New Jersey, and said he is "committed to working with my colleagues in Congress to take the appropriate actions to assist in the prevention, diagnosis and treatment of this devastating disease."
What makes the advocates most confused is the fact that they simply want a hearing on the bill, and money for education, research and prevention. Smith said they are not looking for treatment but instead just need help moving forward.
Phillips added that the groups are not asking the committee to make a decision and they are not asking Pallone to make a decision, they are asking Pallone to "not be the only one who knows about the testimony in the hearing."
"Pallone is saying, 'I don't care if you're sick, I don't care if you're in a wheelchair, I don't care if your kid has been out of school for four or five years. What I care about is that your rallying is tarnishing my image,' " Smith said.
However, Smith said there is some positive news for patients, as the first Lyme and Tick Borne Diseases Research Center opened at Columbia University Medical Center in New York in April 2007 under the direction of Dr. Brian A. Fallon.
Also, the documentary "Under Our Skin," produced by Andy Abrahams Wilson, recently debuted at New York's Tribeca Film Festival and will be featured at other upcoming film festivals.
For more information, visit LymeDiseaseAssociation. org.
Pallone's office may be contacted at 202-225-4671. ********************************* **********************************
2nd link ***********
Lyme disease
Actual size of deer ticks
How to remove a tick
* Don t panic.
'
* Get the tick off; try brushing it off first. * If the tick is firmly attached:
Grasp the tick as close to the skin as possible.
Use rounded forceps or fine-point tweezers.
' * Don t touch the tick because fluid can be transmitted
through the skin. * Pull upward slowly and steadily until tick lets go.
' * Don't use home remedies to remove ticks; they don t really work.
'
* A kit is now on the market with a specially machined
tool that grasps the tick and pulls it out by rotating it.
If you have been bitten by a tick
* After removing the tick, put it in a jar of alcohol;
write down the date of bite.
* With alcohol or Betadine, disinfect the area where the tick bite occurred.
* Wash hands thoroughly.
* Watch the area where you were bitten for a month.
* If mouth parts remain in the skin or a rash develops, consult your doctor and take the tick with you.
Some Lyme-disease symptoms -----------------------------
' * May get a bull's-eye rash.
* Flu-like symptoms may occur -
fever, headache, fatigue, stiff neck, muscle and
joint pain. * Weeks or months later -
more severe symptoms may appear involving heart or nervous system.
Information ------------
www.lymediseaseassociation.org Lyme Disease Association Inc. P.O. Box 1438, Jackson, NJ 08527 888-366-6611 Source: New Jersey Department of Health ******************************************** *******************************************
3rd link **********
Lyme disease patients share their struggles Say early treatment does not bring them out of the woods
BY JENNIFER AMATO Staff Writer
Alaina Rubin has not been in school for three years.
As a 14-year-old, she should be going to the mall and playing sports at Linwood Middle School in North Brunswick.
She should be able to think critically and problem-solve, and participate in extracurricular activities.
She should not have to worry that when the time comes, she could have problems associated with pregnancy.
However, because Alaina was diagnosed with Lyme disease three years ago, she instead is home-schooled and lives a limited life because of the debilitating effects of the disease.
"It's just devastating. My heart is broken," her mother, Nancy, said.
Alaina was not diagnosed for eight months, even though she went to four or five physicians and had three emergency room visits.
It was later discovered that she had direct transmission and has subacute encephalopathy - her brain and spinal cord are inflamed and she has constant headaches.
"The thought of her future right now is crushing, without research," Nancy Rubin said.
Alaina Rubin is just one of an estimated 200,000 people inAmerica, and numerous people around the world, who suffer from Lyme disease and other tickborne illnesses.
Therefore, several patients groups have been trying to garner support for proper diagnosis, testing and treatment options to help limit the effect of the bacterial disease, and are pushing for the Lyme and Tick-borne Diseases Prevention, Education and Research bill to be heard before Congress in June.
Jeannine Phillips, who is the chair of the LymeQuest Support Group and Advocacy Project, has Lyme disease, as do all four of her children.
The former chemist said her illness got so bad at one point that she couldn't remember her children's names, couldn't go shopping for dinner and had trouble talking.
Pat Smith, president of the National Lyme Disease Association and the former vice president of the International Lyme and Associated Diseases Society, has had Lyme disease for 22 years, and two of her three daughters have been diagnosed.
Her youngest daughter has been suffering for 20 years, beginning with absence from school for four full and two partial years.
She also had seizures for three years. She now lives independently, living and working in New York, but she has heart damage from the disease.
"It is certainly an extremely debilitating disease," Smith said.
Jackie Mueller, 50, of Dunellen, used to work with a Fortune 500 pharmaceutical company.
She got sick three years ago - numbness in her arm was considered a heart attack; a heart catheter was inserted because she was thought to have had a stroke; MRIs and CAT scans showed signs of a pinched nerve; acid reflux was a symptom; and two CAT scans of her brain showed lesions, leading to the assumption of multiple sclerosis.
Instead, Mueller was just recently diagnosed with Lyme disease.
"I would come from work - I couldn't make dinner, my house is a mess, I have a 10-year-old I can't play with," she said.
Her sister went through a similar series of misdiagnoses, with lupus, carpal tunnel syndrome and a heart murmur being mentioned. Finally, she tested positive for Lyme, as did Mueller's niece and nephew.
Inga Querfeldt thinks she may have contracted Lyme as a child. She went through several different episodes growing up, and thought she had multiple sclerosis in the 1980s. She got sick in the 1990s and was told it was stress, related to the death of her father. She had two gastrointestinal surgeries and was hospitalized several times.
During a visit with her psychiatrist, the doctor noticed she had swollen joints and a fever, and mentioned the possibility of Lyme.
Querfeldt went back to the hospital, had different lab work done and tested positive for Lyme.
Her official diagnosis came in 1995, and then in 1999 she was also diagnosed with babisiosis, a polymicrobial infection.
The 64-year-old Bloomfield resident said the current screening tests - most commonly the enzyme-linked immunosorbent assay (ELISA) test - are only 40 to 60 percent accurate, which is why the goal of the proposed House bill, would be to promote proper diagnosis and treatment methods.
Mary Rock, 48, of Metuchen, said every member of her immediate and extended family has contracted Lyme disease.
She said her dad was involved in biochemical warfare experiments in the 1950s and was injected with various bacterial and viral strains, such as Q fever, equine encephalitis and Rocky Mountain fever.
She said she noticed her own symptoms of vertigo, heart palpitations and numbness, and at age 35 she thought she was having a heart attack or was exhibiting symptoms of a neurological disease.
Rock had two years of negative tests for Lyme, but developed seizures and lesions on her brain. She said, "After four weeks of IV, I was supposed to be fine."
Instead, she had two and a half years of intravenous medication, and is now "functional" but said she still has problems.
"Even with extended treatment, I still have symptoms - we all do," Rock said.
Rock also said that one disease affects another, especially since the immune system becomes run-down, so the typical 30- day treatment is not effective enough.
"It takes a long time to eliminate all the various pathogens," she said.
Kathleen Kirby, a school nurse, has been watching her daughter, Moira, 24, suffer for seven years.
Kirby said that in 2000, as Moira was a junior at East Brunswick High School, she got flu-like symptoms, including debilitating headaches.
She was treated with antibiotics for a sinus infection several times and would be fine for a while, but then the headaches would return.
"You kind of get vibes as a mom, and as a nurse, and you think, 'Something is not right,' " she said.
After visiting with 13 different doctors, Moira had to stop playing basketball.
Kirby said her daughter couldn't sleep, wouldn't eat, couldn't do her homework and would just lie in bed.
She went to a neurologist to check for migraines, but the headaches continued despite treatment, in addition to the fact that Kirby thinks there were more negative side effects than benefits from the medicine.
Kirby searched for information on the Internet and became aware of Lyme, noticing that headaches and lethargy are major symptoms.
She took her daughter to an infectious disease specialist, who made a decision that the infection was not Lyme, based on the Western blot test.
However, Kirby was still concerned because as the disease progressed, her daughter lost a significant amount of weight, was not eating, and was sleeping all the time.
"She felt like her body wasn't doing what her mind told her to do," she said.
After visiting a hospital in Philadelphia, Moira was sent home again.
She then received a call from a neurologist from the hospital, who diagnosed her with Sjogren's disease, a chronic disease in which white blood cells attack the moisture producing glands.
Because Kirby knew that was something that usually affects women over 40 who have no saliva and dry eyes, she was still not satisfied.
Two and a half years into this, Moira went back to a headache specialist, visited three or four rheumatologists for limb pain, had two spinal taps and would randomly lose her vision.
"In the hospital, the first thing she got to do when she was 18 was sign for her own spinal tap. But it was for nothing - there was nothing there," Kirby said.
Moira did graduate from high school and went on to Rutgers University, but her mother would have to give her injections constantly, and while studying abroad in Germany, Moira had to have intramuscular injections of penicillin.
Kirby then met Phillips through an Internet forum and became convinced her daughter was suffering from Lyme disease.
"There is no good information out there," Kirby said of the importance of having the Lyme bill support research endeavors. "Education is such an important thing."
Margie O'Brien, of South Brunswick, agrees that more research and education are needed, especially to counter the thinking of some experts that Lyme can be "cured" in 30 days.
She said if the disease were so easily treated, thousands of patients would not be suffering.
She is among the many who believe there is a need for an effective vaccine to prevent the awful ravages of the disease.
In 1999, Smith Kline Beecham got FDA approval for the LYMErix vaccine, but it was removed in 2002.
"I consider us lucky because we know the truth, but what scares me is the parents who don't know about Lyme and their children are so sick," she said.
O'Brien said her two children and her neighbors all have forms of the disease.
"It is aggravating that no one is paying attention to what is going on," she said. "How many children are going to have to suffer the consequences of this ignorance?"
To contact Rep. Frank Pallone regarding the Lyme disease bill, call 202-225- 4671. *********************************** ************************************
OUTSTANDING ARTICLES!! i'll be back late tonight or tomorrow to send a thank you letter for printing these !! KUDOS TO YOU~
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