Urgent Action Needed To Stop IDSA Corruption

[hilly]

Noone seems to answer any of my posts these days, :<( but this one is important.. If all the good lyme literate doctors who recognise Morgellons as well are prevented from treating their patients we are in big trouble... Action needed guys and gals.... Milly x



California Lyme Disease Association

News Alert
April 2008



The 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.or...1.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.

[Jo]

Great post Milly. Please keep them posts a comin Thanks xxx

Action!!

http://www.lymediseaseassociation.or...1.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)

Well - this bits good news at least:

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

[10meters]

I wonder if its possible to have morgellons without being lyme positive? The only test I have tested positive for is c. pneumonia and some thyroid condition. Why then Have I been diagnosed OCD, Bipolar, psychosis, etc? All indicative of the psychiatric manifestations of lyme? Or are these the manifestations of morgellons? From what I have read on the lyme message chain letters on yahoogroups., many who have lyme have tested negative for it even on the Igenex Western Blot. What good are these tests anyway? if doctors would just look at their patients and make a diagnosis based on their symptoms, most would improve. But docs must rely on evidence based medicine that is totally bugus with unreliable testing. I guess even lyme PA's nowadays don't look at the clinical manifestations of their patients. What a shame!

[Jo]

Hi 10meters,

I'd love to know how Lyme's implicated in this. It plays out in my head everyday like a chicken and egg conundrum. WHICH came first?? OR do they come in the same package?

I wonder if the borrelia bacteria makes the morg symptoms show up and that the morgs stays dormant without it.

Marc Neumann has posted a new Lyme test on his website called Elispot.

Its 20-200 time more sensitive than an ELISA test apparently.

http://www.morgellons-research.org/m.../lyme-test.htm

hope you're doing ok

Jo xxx

[carla]

I think it comes as a package Jo. The people that I know of, who have had lyme disease for years , don't seem to be getting morgellons.
carla xx


Arr Milly , I love you xxxxxxxxxx

[Jo]

The people that I know of, who have had lyme disease for years , don't seem to be getting morgellons.

I agree Carls. I'm pretty sure my dad's got Lyme. The doc found a tick burried in his skin for a week!!

But he hasnt got morg symptoms. If Lyme tests were more accessible, we could see for sure if people with morgs also have Lyme.

Joey xxx

[Kritters]

Hey Jo,

I don't remember...is it true or not that symptoms such as a rash don't necessarily show up and also that the other symptoms may not show up for years? You say he doesn't have Morg symptoms, but does he have any Lyme symptoms? (whatever they are)

Kritts
xo

[Jo]

Correct Kritts.

Somewhere in the region of 50% of Lymies dont remember getting bitten and either didnt get the bulls eye rash (looks like target rings), or they didnt get the rash in a noticable area of skin (say on the back).

My dad got the tick on his chest. He didnt have a rash, but 7 years later has attacks (about 3 a year) which puts him in bed for a week or so.

These include night sweats, painful swollen joints - one at a time (fingers, toes, elbows, shoulder) which travel around his body, usually ending up in a finger or toe when its subsiding. Extreme tiredness and dementia type symptoms.

It totally fits.

He kinda agrees with my research. Need to work on him some.

xxx

[carla]

We are in for a long long wait Joey , for Lyme test to improve or become more accessible .
carlaxxxx

[Kritters]

Jo~

I recall reading that there can be other rashes besides bullseye. I think there were pics somewhere on the net. One was very large and no distinguishable shape (like my body ) only kidding (gotta have laughter, ya know?) Course...I coulda been dreaming..........

I remember thinking this makes sense that I may have it. First of all, as I've mentioned only........a BAZILLION TIMES!!! (hope you're not all sick of hearing about them) that my son's dawgs are transport machines of the ticks in the back yard to the TOP SOFA CUSHIONS.
Drives me insane when I'm there. From outside in tick haven to three hops and a leap onto the sofa. The ticks don't even know what hit them or how they found themselves in a new and improved home.

Okay, so I have this huge red rash type discoloration on top of my right thigh. Originally it was fairly solid, and now it's more dispersed, looking like a marblized maze. Never had anything like it before. I only had one test for Lyme at IMO a lame lab, so who the heck knows.

I find it interesting, don't you, that your Dad experienced aches and pains in different areas, one after the other. As if the critters are taking a road trip in the body.

Anyway, I hope your Dad will feel/get better. He's lucky to have you for a little squirt (not sea squirt ).

xoxo
Kritts