This Lyme thing is really a travesty, but now there is a possibility to reverse this injustice and help people with Lyme get treatment and possibly cured. Lyme is a form of arthritis known to be infectious and (sometimes) curable with long term antibiotics.
California Lyme Disease Association, the national Lyme Disease Association and Time for Lyme distributed the following press release on April 9, 2008, regarding the IDSA's recent attempt to kill federal legislation that would provide funding for Lyme research and give patients a voice in research needs. To help get this bill passed in the Senate and House, see instructions below the release.
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them
Already caught up in an anti-trust investigation, IDSA opposes research bill in order to maintain monopoly over Lyme diagnosis and treatment options
Washington, DC - Physicians specializing in treating chronic Lyme disease and a national coalition of Lyme disease patients and their families today accused a medical research group of trying to exercise
monopoly control over research on Lyme and tick-borne diseases.
"We're very disappointed," said Pat Smith, president of the national Lyme Disease Association (LDA), responding to a letter to Congress by the Infectious Diseases Society of America (IDSA) that seeks to deny patients a voice regarding the research needed to better understand the disease.
Lyme disease is a serious bacterial infection that develops from the bite of an infected tick. The disease is often misdiagnosed or goes untreated, causing many patients to suffer persistent health problems,
including neurological disorders, crippling muscle and joint pain, disabling fatigue, psychological disorders, and even death. Even when Lyme disease is caught early and treated with a short course of
antibiotics, the debilitating symptoms can persist and require additional longer-term treatment.
In March, IDSA wrote Congress attacking the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, introduced by Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and
Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE) in the Senate. The broadly supported bipartisan bill calls for acceleration of Lyme disease research and creates a new federal
advisory committee made up of the full range of scientific viewpoints on Lyme, including a seat for patient advocacy groups.
The IDSA is currently under investigation by the Connecticut Attorney General for abuse of monopoly power and exclusionary conduct in formulating its Lyme disease guidelines, which were developed by a
panel that held significant commercial interests in diagnostic tests, vaccines, and consulting arrangements. In its letter to Congress opposing the Lyme Bill, the IDSA failed to mention this ongoing
investigation.
IDSA researchers have virtually controlled Lyme disease research for the past 30 years amidst ongoing controversy surrounding its guidelines, which deny patients the right to treatment options and
undermine the ability of physicians to use their clinical discretion in treating patients. IDSA provides private health insurance companies with the basis for denying long-term treatment for chronic Lyme
disease.
The California Lyme Disease Association (CALDA), national Lyme Disease Association (LDA) and Time for Lyme (TFL) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection.
If the IDSA gets its way, this bill will die without ever having a public hearing. If you don't want that to happen, here's what to do:
Right now, the bill is stalled in two Congressional subcommittees (one in House, one in the Senate.) If the committee chairmen do not release the measures for a vote, the Lyme bills will die. We would then have to wait until next year to start the process all over again.
Click here for a list of states with members on the committees:
http://www.lymediseaseassociation.org/HR741/HR741.html#Actions
If your state is listed, click for contact information. Urge your representatives to contact their committee chairmen and request a hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator
on your list, have him/her contact Senator Edward Kennedy (MA), chairman of the Senate Health, Education, Labor and Pension Committee. If it is a member of the House, have him/her contact Congressman Frank Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.
Phone your representatives in their DC offices during regular business hours. It's quick and easy. The staff will tally all calls they receive.
If your state is not listed, see "other actions needed by individuals" at the above link.
Actual bill text:http://thomas.loc.gov/home/thomas.html
Click Bill # and type S 1708 or HR 741.
Gimpy-a-gogo2008-05-03 02:15:46bumpDamn, I missed this, and it was to the bottom of the page again.
Hey, guys. You may not think you have Lyme and you may not be concerned about how this all plays out - but this is something we all need to look at. As you all have probably figured out by now
If you've seen the posts on Lyme various people have made, from those on TNF-blockers who had previous Lyme exposure reactivate, to those posts about the machinations of IDSA, something should be making you go 'what's the big idea about a little research?'
Please take a moment out of your busy day and hit those links and see if we can drum up a little support. The person you help might be a Lymie - but it could also be you!
Fight the Power!
Pip
hi gimpy. i have never heard of lyme disease in the uk
Boney
Hi Boney fingers!
Lyme borreliosis is a world wide problem.
Ron
In many ways, borreliosis is like syphilis. Both of the germs that cause syphilis and borreliosis are called spirochetes (spiral-shaped bacteria). Before penicillin was discovered, doctors called syphilis “a great imitator” because syphilis can imitate or mimic virtually any disease. Likewise, borreliosis often mimics other diseases. This is one of the key points of this website. Borreliosis can cause any symptom and any disease. People who have not been healthy need to consider this infection as a possibility if they are trying to find the cause of their medical problems.
Ron
Hi Ron your first link required a log in..
Hey Boney, 60 ain't old....for a tree!
I would guess that many who are this age have some form of arthritis. If you read my OA page you would see that I had a sudden onset of OA which makes one think of an infectious cause. My experience is that Lyme or co-infection has an affinity for previous damage.
I have always wondered about persons that experience a flare of arthritis....is there an infectious cause?
Ron
lol Ron i never meant the 60 yrs it was the B.C that would make you
2068 years young... i have wonderd about what you say.. after spending
a long time on penecillian.. i told the nurse i feel better on penecillian. she says
it is because infection flares ra as the immune system jumps into action..
when antibiotics are given the infection goes and ra settles..
i had 8mths on penecillian whith chest infection.. on mtx and pred my back
took a massacre from ra .. whith little inflamation showing on blood tests.
it took antibacterials to resolve infection..
Boney
Heh, Heh........Boney Brain!
Gogo, not hijacking your thread, just showing the importance of your post.
Ron
On the contrary, thank you for keeping this thread alive. This is an urgent issue and I think that might get lost on a lot of people, so anything that can help raise awareness is good. A few weeks ago, 6T5 posted this important information about Lyme:
[QUOTE=6t5frlane] I live in a Lyme endemic area. I truly beleive it is an Epidemic that is spreding. Perhaps it's always been around. Remember that for years many thought it was JRA or RA. On Long Island NY they had something called Long Island Knee. They thought it was a form of RA. The Deer Tick can carry all kinds of other transmitable diseases. The testing leaves a lot to be desired. If your body does not respond with an anti-body after the bite your test will be Negative. Remember the test is not to see if you have Lyme but to see if your body is reacting to the bite. There are so many False Negatives that even the CDC says diagnosis is based on Synptoms. The CDC requirements for a Positive test are from 1993, Crazy !!!. For example, if you get a Western Blot test, the results are shown as " bands " There are some very specific bands that can only be form a Lyme tick. The CDC requires that you need 5 of these bands to be positive. So you could have 4 and the test will say Negative. Most DR's don't know anything about Lyme. They will look no further into Lyme. Labs like Quest and Lab Corp are not noted for their Lyme testing. Here is another example of how the CDC gets it wrong. Say you have a test and have 4 bands show. The fifth band is band 31, Band 31 is a very Lyme specific band. They will not include it since a few years back they actually made the Lymerix vaccine ( it's been taken off the market ) from it. They will not include it since they fear someone may have taken the vaccine years ago. So 4 bands that are Lyme specific and band 31 and your DR gets a NEGATIVE result mailed to him. Some Labs actually list ALL the bands when you get the test back and a good DR can make a jugement form it. Igenix in California is one.MDL another. Any way you look at it it's scary. This week in my local paper there was an article about how Lyme can Live on even after treatment. People have died from it. If your DR says OK we will do an Elisa test you can agree but also get a Western Blot test done. Oh and half the people bitten never get the Bulls Eye rash Dr's speak of. I have seen how debilitating this can be first hand. [/QUOTE]
Today, I read an article which had this to say:
“We’re trying to get the message out that this is something that’s hitting our corner of the world hard, and we’re 25 years behind with research,” Hornacek said. “Given what I’ve been through, I feel it’s my duty to let people know. It’s insane — it’s so much more common than people realize.”
The infectious disease is caused by bacterium from ticks, and sand flies and mosquitos also have been implicated. It can be transmitted in utero or sexually. If left untreated, the disease spreads to the nervous and immune systems and the heart and joints.
Because it can lie dormant for years before manifesting itself in any physical manner, this is a scary reality for many people. Additionally, misdiagnosis is common because most doctors aren’t familiar enough with the symptoms, Hornacek said.
According to the International Lyme and Associated Diseases Society, Lyme disease is the fastest-growing worldwide epidemic.
“We don’t want to throw the population into a frenzy, but there’s evidence linking Lyme’s to autism, lupus, rheumatoid arthritis, chronic depression, fibromialgia, restless leg syndrome,” said Dr. Catherine Bright-Helms. “Currently, there’s no really good blood or urine test to detect the disease, and there are no known clinical studies to find a vaccination. That’s a problem because of the ripple effect it has.”
Also:
Activists have been lobbying for politicians to take action on The Lyme & Tick-Borne Disease Prevention, Education & Research Act, bills S 1708 and HR 741, to provide money for research and the expansion of federal efforts aimed at eradicating the disease. The bills call for the creation of an advisory committee.
“They’re sitting on it. We’ve been tying up the phone lines because we need this money released now, and it’s in danger of expiring,” Hornacek said. “Here I am trying to contact the government when the thought of expending the effort to pick up the phone is overwhelming, and I can’t even recall the proper vocabulary half the time because of the brain fog caused by the disease.”
This article can be read at:
http://www.uticaod.com/lifestyles/x1829927400
How many of us are affected by Lyme and don't even know it? What clues does Lyme hold about RA? Why is Lyme being swept under the rug?By the way Hermsi, I can give you the contact information for an excellent Lyme literate doctor who practices out of Hope and Vancouver if you're interested.Gogo, if you are talking about Dr. Murakami, he retired the middle of Feb. Last Sat. his patients had a retirement party for him in Hope, over 100 attended and ate sushi.
I didn't make the 500 mile trip as I just recently broke my leg....boo hoo!
Ron
I was. Oh, no! I knew he was semi-retired but my friend has Lyme and he took her as a new patient in December or something. She said he told her he was having trouble with his license because of the way he treated Lyme. Was he your doctor?I guess you could say that he was my back up doc if I really got into trouble with my therapy.
I have a family doc that is only two hours away.
Ron
bumpbump
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