July 30, 2009


Today has the potential to be the start of HUGE, PIVOTAL change in the diagnosis and treatment of lyme disease. please pray for the landmark hearing that is going on in Washington, DC in regards to the diagnosis and treatment of lyme disease. pray that the truth would finally be revealed.

Historic Hearings On Most Controversial Disease in US: Lyme Disease

Lyme Patients Gather in D.C. and Around the World to Push for Better Treatment and Recognition of Chronic Disease

Story Summary:

  • What happens if a tick borne illness is missed, or left untreated? Millions of patients say they suffer from chronic (or long term) Lyme disease. But gatekeepers in the medical community refuse to recognize illness.
  • Connecticut Attorney General sued gatekeepers (Infectious Disease Society of America, or IDSA), forcing the oversight panel to review its controversial treatment guidelines that bar patients from getting a chronic Lyme disease diagnosis and treatment.
  • Hearing to review long suppressed scientific evidence that Lyme disease can become persistent and debilitating.
  • Lyme disease patients from around the world will watch the DC-based hearing via webcast & participate in an international Twitter Chat to share reactions

"The medical establishment will be forced to consider the strong scientific evidence that Lyme disease can become persistent and long term infection that may require more aggressive treatment than what is allowed in the current treatment guidelines", says Dr. Daniel Cameron, President of the International Lyme & Associated Diseases Society (ILADS). Cameron will join several doctors, scientists and patients testifying at Thursday's hearing.

The Infectious Diseases Society of American (IDSA) holds this hearing in response to an antitrust investigation by Connecticut's Attorney General Richard Blumenthal. In his groundbreaking lawsuit, AG Blumenthal charged that the IDSA guidelines for Lyme disease prevent many seriously ill patients from getting necessary treatment. A 2008 settlement resulted in the IDSA agreeing to create a new panel to review its guidelines.

Doctors treating Lyme disease aggressively with long term antibiotics are targeted by medical boards and insurance companies and face losing their license."READ MORE HERE.

the IDSA guidelines that are under review are the exact same guidelines that the Canadian medical community has adopted as practice. in fact, in Canada, these American guidelines are emphatically adhered to at the detriment of thousands of Canadians. (READ HERE and HERE about some of my own experiences with this biased attitude...)

the ONE leading lyme disease doctor we had in ALL of Canada that was willing to treat lyme outside of the stringent IDSA guidelines was harassed for 7 YEARS by the BC College of Physicians and Surgeons. In January 2008, he finally succumbed to the enormous pressure and was forced into retirement. this meant myself, along with thousands of other Canadians (were) and are now forced to seek treatment in the US.

click on link to watch - BC LLMD FORCED INTO RETIRMENT

ultimately, it was this systemic bias and prejudice that eventually forced me into seeking treatment in the US and THE LYME LIFE FLIGHT was the end result

unfortunately, my case is not the exception to the rule.

so, as you can well imagine, today has the potential to be incredibly pivotal moment for change. please pray for the long suppressed medical research to be given fair review. pray that the truth would finally be revealed.

we need for this disease to be recognized, across the board, as the chronic, persistent, debilitating, life threatening infection that it is.

we need access to treatment. we need the doctors who are willing to treat LD, to be able to do so, free from the threat of recrimination and harassment.

ultimately, we need more research done to find a cure.

many people's lives, mine included, depend on it.


btrflynana... said...

I watched "The Lyme Life Flight" video you posted...wow!!!

..I am so sorry that you and all of us are in this blasted battle...

I pray that yesterday's hearing brings good for us all!

Both of our governments need to stop ignoring us and hearing us!!!I pray they see this disease for what it really is!!

Hang in there! Hugs Karen

Renee said...

This is very good Shannon. Very informative. Thanks for taking the time and energy to write it.