Urgent Action Needed To Stop IDSA Corruption

[hilly]

I did'nt have the bull's eye rash... but when I went to see the chronic diseases clinic in the States about my morgellons, I was tested for Lymes amongst other things and proved positive. I was told that out of over 200 patients with Morgellons, a very high, in fact almost all had Lymes. They thought I had had Lymes for a couple of years at least and that made me weak so that the morg could make it's entrance..... Milly x

I do hope people will write to their respective representatives. These doctors who stick their necks out and risk prosecution to treat Lyme and morg need all the support they can get......

[hilly]

Daily Telegraph today..

Bite from tick on French holiday led to death leap.

A woman fell to her death from her bedroom window after suffering paranoid delusions caused by an insect bite an inquest heard yesterday.
Jan Linton 58 was bitten by a tick while staying on a friend's rural estate in France.
Within 6 months she was acting 'very strangely' and claimed that the police 'were out to get her' .. Westminster coroners court was told.
It is believed that she had contacted Lyme disease, a tick born illness that is notoriously hard to diagnose.
The infection - also known as borrelia or borreliosis - has a range of symptoms including changes to the skin, joints and heart. In a small number of cases it spreads to the central nervous system, causing psychosis and delusions.
Miss Linton, who was unmarried, died instantly after falling three stories from the window of her flat in London.
Miss Linton, a very active, independant lady of private means returned to London to seek medical help for debilitating joint pains which she thought could be related to the bite.
Her GP suggested that she had Lyme disease and sent her for tests. However, her mental state deterioated rapidly. She became exhaused from lack of sleep and began suffering delusions.
A friend feared that she believed she would be considered a 'nut case' and at one point she believed that the police were in her house and out to get her.
On the morning of the 16th Jan the friend heard what sounded like Miss Linton talking to herself, and ran into her bedroom and found it empty and the window open.
The Westminster coroner, Dr. Paul Knapman, said that Miss Linton was 'clearly not herself' at the time of her death and her behaviour was 'totally out of character'.. He recorded a verdict of death by misadventure.

' Lyme Disease - named after the town in Connecticut where it was discovered in 1975 - can be difficult to diagnose because it's symptoms are easily mistaken for something else. It is caused by a bacterium transmitted to humans from the bite of an infected tick. Common symptoms include a circular red rash which spreads from the bite, along with a fever, headaches and fatigue. It can be treated with antibiotics but if left alone can spread to the joints, heart, and nervous system, causing memory loss, sleep disturbance and mood swings.
There were 684 cases in England and Wales in 2006, though numbers are expected to increase because the tick population is rising. '

If we don't support the Lyme literate doctors, more people like this will tragically lose their lives. Milly

[2manyfibers]

Something Tara had posted the other day caught my attention regarding my friends across the pond which mentioned that Lyme disease had been documented in Europe around 1900 (of course at that time it wasn’t called Lyme disease – Lyme is a town in Connecticut where an outbreak of the disease occurred in the mid 1970’s). But this made me wonder how long Lyme (or specifically, the spirochetes associated with it) had been documented in the UK. After doing a little digging I found the site below that has some very interesting information (at least to me). Based on DNA from ticks preserved in the Natural History Museum, Lyme goes back to Victorian times (the period from approximately 1837 to 1901). Common sense would dictate that ticks can feed on many animals including sheep – and other insects can spread this infection as well and eventually spread the spirochete to humans. Here’s the site with a couple of excerpts from it:

http://www.lymediseaseaction.org.uk/lyme.htm

Who gets Lyme disease and Why?

In the United Kingdom, Lyme disease is carried by the sheep tick, Ixodes ricinus. This tick can also feed on deer and other wild mammals and birds. The tick prefers to live in woods, heath and moorland, although it does not occur exclusively in these habitats. People who live in the parts of the country where the tick is prevalent are likely to be at greater risk. However, cases of the disease are widespread and it is possible that the full picture of tick distribution is not yet fully understood. Anyone can get Lyme disease if a tick that is carrying the infection has bitten them.

Is Lyme disease a New Illness?

Studies of the DNA taken from ticks in the Natural History Museum show the infection was in the UK in Victorian times. Therefore, it is almost certainly not a new illness. However, it does appear to be becoming more common.

Obviously, if these insect borne spirochetes can be verified to trace back well over 100 years in the UK, there are unquestionably quite a number of cases there by now (and it would be reasonable to believe that this infection goes back in time far longer than that). I would think that practically anywhere in the UK including the major cities has the potential of animals roaming around (sheep, deer, dogs and many others) that could be carrying ticks or serving as a food source for insects like ticks and mosquitoes. It seems like more doctors in the UK would avail themselves of your healthcare system and undergo cranial / rectal extraction surgery (having their heads removed from their arses). Maybe then they would start paying attention to what appears to be a lengthy history of ticks being infected with the spirochetes that cause Lyme disease (and thus humans being infected) in the UK rather than many of them trying to deny its existence as appears to be the case there. It doesn’t seem unreasonable to me that doctors should be familiar with the basic history of the UK, at least well enough to realize that insect borne illnesses have been around a long time and can be spread quite easily. It seems more and more like arrogant, uninformed and apparently disinterested doctors are far too plentiful no matter what country you happen to live in.

As you say Milly, people need to support the few good doctors that will make honest efforts to treat Lyme regardless of what country they are located in.

[hilly]

Please act on this.........and help all Lyme Disease sufferers..


.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.
####################(end of press release######################

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.

[hilly]

Does NOONE care about this ?? I'm amazed at the lack of interest.. if all the caring doctors in Lyme and Morg have to give up, we will all be a great deal worse off... and interest in our problems will be even less. I'ts hard for me to write as I don't have a US senator...

Milly :<(((

[hilly]

Oh well then.. I'll pick a State and a Senator and write to them for you ! LOL.. M

[Kritters]

I'm going to write my senator and anyone else I can contact regarding this bill, thank you.
Kritts

[hilly]

Hey ! Well done Kritts thanks. I've picked four States and written to the senators too explaining that in this matter the Britts seem to be as bad as the USA in taking Lyme Disease seriously, so I hope it helps. Milly x

[Jason]

Hey Milly,

Good work, i have only just seen this message, haven't been around for a while. But i am in total agreeance that the IDSA can not get its own way on this as they have in the past. LLMD's are the only hope patients have of recovering 100%. And also the only hope that one day all these chronic diseases are fully recognised and treatment methods are put in place.

I will take a look tonite and send some off to the US, not sure if non US citizens requests will be taken seriously but its worth trying. I hope all you guys are also try to lobby this, because if IDSA get its way everybody will be sick for a long painful time.

[hilly]

Welcome back Jason....Glad you had such a great time.. Good to share news in pm's and thanks for your interest in this. It is so important that we support those docs who are trying to help us... Milly x