LYMEPOLICYWONK: SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

24th December 2011

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Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them.

The NGC’s decision was based on the IDSA’s claim that its antitrust review process in 2009 fulfilled NGC review requirements. We strongly disagree. (Read why here.)

The NGC needs to remove the IDSA 2006 Lyme guidelines listing until they have been fully reviewed and revised. The IDSA needs to review its guidelines in an open and transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease, reflects the current state of the science, and complies with GRADE–a rigorous assessment standard that the IDSA adopted for guidelines reviewed after 2008.  If you agree, sign the petition to let them know! 

Click here to sign petition

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.

Related posts:

  1. LYMEPOLICYWONK: IDSA PETITION –CT RESIDENTS URGED TO SIGN, DISTRIBUTE AND DELIVER!
  2. LYMEPOLICYWONK: ILADS Calls on IDSA to Remove Barriers to Lyme Guideline Change
  3. LYMEPOLICYWONK: Thanks to Everyone Who Helped With the IDSA Petition!
  4. LYMEPOLICYWONK: IDSA Lyme Guidelines—A Poster Child for Guidelines Reform? Institute of Medicine Says IDSA Lyme Guidelines Highlight Need for Change
  5. LYMEPOLICYWONK: Researcher finds IDSA treatment guidelines long on opinion and short on science
Comments

63 thoughts on “LYMEPOLICYWONK: SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

  1. I urge you to follow NGC currency compliance procedure and remove the guidelines until they have been fully reviewed and revised.

  2. Please remove the 2006 IDSA guidelines from the NGC. Also, I would ask that you do an objective review of the latest research on Lyme disease and adjust your guidelines to reflect the reality of Lyme.

  3. Please remove the present IDSA guidelines. They are rediculous at best and they are an insult and affront to those of us who suffer from this disease and know that antibiotics do not always cure chronic lyme, but at least with them, we are able to function much better.

  4. I urge you to remove the outdated IDSA guidelines from your site. They have not been revised per your own rules and requirements and do not reflect updated information based on what has proven clinically to provide the most effective treatment and recovery of very sick patients.

  5. It is a given that early diagnosis is paramount in LD. However, the present IDSA Guidelines prevent patients from getting this diagnosis and proper antibiotic treatment. Please it is time to change the GUIDELINES !

  6. I urge you to remove the outdated IDSA guidelines from your site. They have not been revised per your own rules and requirements and do not reflect updated information based on what has proven clinically to provide the most effective treatment and recovery of very sick patients.

    The IDSA guidelines, reflect the same guidelines this organization put together more than 5 years ago which excludes all the viewpoints clinically and scientifically that disagreed with their "opinions". They are not evidence-based, are outdated and incomplete.

    The IDSA continues to put substantial road blocks in the way of more knowledgeable Lyme treating physicians, their patients, and in doing so, are contributing to epidemic cases of much sicker Lyme patients than is necessary – oftentimes, with devastating consequences to the victims of this unfair, inaccurate, and even negligent stance specific to the treatment of Lyme disease.

  7. NGC currecy compliance procedure need to be followed. This can not allowed to be swept under the carpet and forgot about. Review needs to be conducted ASAP.

  8. Those of us with late stage Lyme Disease (and it's co infections) are proof that the IDSA guidelines, as they stand, are keeping us sick and dying. We are not getting the early diagnosis. Our children and grandchildren are being born with it, and suffering, as well, with late (or no) diagnosis. This is wrong, on so many levels. Stop the madness and cruelty! Change the guidelines to help people, instead of killing them!

  9. In this urgency, Please remove the present IDSA guidelines. There are Human Souls here that Need to be treated humanely, suffering should not allowed. The IDSA is not compassionate or empathetic.

  10. "Please remove the outdated IDSA guidelines from your site. They have not been revised per your own rules and requirements…." What else can be said?
    People's lives are being ruined & good, caring & professional doctor's are being railroaded by such punitive guidelines…

  11. Please remove the current ISDA Guidelines until they can be updated with PROVEN results. Those of us who did not receive an earily diagnoses, get sicker everyday. We are passing it onto our children and spouses. We need Proper diagnoses and treatment,,, don't we desearve it? With the growing list of people getting infected every year, what if your children got it? Don't your children deserve better? Something to think about…

  12. The IDSA guidelines are doubly flawed in that they not only disavow Chronic Lyme, but their treatment guidelines for Acute Lyme are ineffective enough that many Lyme patients who could have been easily cured early on will end up as Chronic Lyme sufferers.

    Quite a Catch-22.

    I have (knock wood) narrowly avoided Chronic Lyme, but not by following the IDSA. There's not a doubt in my mind that I'd still be sick if I had.

  13. NGC:Protect your OWN credibility and remove this abomination! SO outdated, blatantly ignoring so much current and REAL science… not level III (opinion). Every group with guidelines posted should be calling for this as the IDSA now has cast a shadow on them all.

  14. The current guidelines for Lyme Disease is keeping people sick and broke. Having medical insurance does no good if insurance companies can hide behind the current guidelines. Guidelines need to change!!!

  15. Please help all the people suffering with Lyme. I went to a Lyme literate doctor and after a long three year battle finally have my life back. Live in PA and in are area is numerous cases of Lyme disease with no doctor literate on the treatment. Please don't allow this atrocity to continue. Ignorance isn't bliss.

  16. I echo many of the comments on here, urging the NGC to remove the IDSA guidelines. The IDSA guidelines do not accurately address or treat the true nature of Lyme and many other tick-borne illnesses that fall under the umbrella of Lyme.

  17. Have you ever seen anyone with Lyme Disease before treatment? 4 1/2 years before I was diagnosed and I HAD a rash. All of that time with NO antibiotics. I had trouble trying to figure out which building I would jump off of. Finally found a Lyme Literate Doctor and a year later was so happy that I didn't jump. Never the less it has left me with chronic symptoms and it sure would have been much cheaper for every facet (insurance companies) and my family had they given me some antibiotics when they saw the rash.

    The Doctors are uneducated and are afraid of the State Medical Boards.

    This is one of the crimes of the century!!!!

  18. I join in asking that the CDC guidelines be removed for their inaccuracy and the whole of the issue reviewed by NON-CDC panel people. It's time the information that goes out from there is up to date and accurate!

  19. This is an urgent situation in this
    country. Lyme disease is a widespread problem. And it is being found to be present in some people with serious and life threatening illnesses. More treatment, research, and easier ways to test for the disease are urgently needed. And insurance coverage should be available to all people. At present
    Lyme disease is difficult to treat effectively due to the cost of private
    Lyme specialists and the non training of
    family care and internal medicine specialists. And all autoimmune patients should be tested for lyme. Please stop the outdated and antiquated
    methods your guidelines contain.

  20. Remove these inadaquate, outdated, unreliable Lyme disease guidelines promptly. Form a new committee to redesidgn and reestablish new Lyme disease guidelines ensuring BOTH SIDES of the Lyme debate.

  21. Please listen to the cries for help. We are sick who won't allow you to address this. What are you afraid of? We are here to fight and the numbers are growing. I think you need to no we will not go away!!!!!Address this CRITICAL issue.

  22. PLEASE, release yourselves from unethical misconduct and abuse of power – for alleged personal, commercial and ideas and political beliefs self-gain at innocent and needy families, taxpayers' federal and international expense – crippling innocent children and families for your and stockholders' pocketbooks deemed more important than public health.

    cal erwes of es as

  23. DO THE RIGHT THING! The IDSA guidelines do not accurately address or treat the true nature of Lyme and many other tick-borne illnesses that fall under the umbrella of Lyme. Victims of chronic lyme have a constant battle, physically, mentally, and financially. The proof is there, time to do the right thing!

  24. I suffered a 20 year hell due to organized ignorance of the Canadian Official medicine. I was Dx with many neuro syndromes, and had several surgeries for unknowned infections.
    This situation was due to ignorance by ID Drs and the fear of others treating adequately this disease with long term and heavy antibiotics protocols.

    I am now almost symptoms free. Except for the babesia infection that for years I certainly help spreading through the blood supply.
    I now understand , in part why chronic fatigue and other illnesses like fibromyalgia is omni present.
    It is about time your association gets down to act against the Lyme Disease epidemic not the patients and their caring doctors.

  25. It took 7 years to diagnose my case of Lyme. First, because the Western blot test used to diagnose the Lyme (the test recommended by the CDC ) did not identify my Lyme. This is because the titer had been removed from the test and not put back into the testing panel. I ended up with Chronic Lyme. That our government and its agencies cannot manage to update guidelines that are so outdated is criminal.

  26. The conflicts of interest behind the current guidelines for treatment of LD are a scandal. Do the ethical thing and reevaluate based on evidence-based medicine. Countless people are suffering needlessly.

  27. In late 2002, went to an ER with a bulls-eye rash on my leg. Never saw what bit me but the doctors and nurses did not know what they were looking at. Almost one year later I was diagnosed with acute Lyme. I have been on IV four times since 2004. My Brain scan reads: degenerative brain disease with a loss of mass. Smell and taste are gone. Very little sensations left. Two retirement plans gone ! Not working…. Disability denied me 3 times. Advised I will have to wait 12-14 months for a court date due to the system being backed-up. My once sharp memory and retention are history. It is past overdue for these guidelines to be changed. HEADS NEED TO ROLL over this. Too many people have died that could have been helped. Whole families are infected but unable to pay for long-term treatment. What we have been put through is a crime !

  28. I agree with the comments here. Please do the right thing so we can get well! My insurance does not recognize this disease despite many positive results and symptoms.

  29. I have suffered for over 20 years with chronic Lyme disease despite the best treatment. I was not considered positive by most IDSA standards but eventually was found to have positive spinal fluid with a Stoney Brook assay. I have numbers of my own patients who are told there is nothing wrong, despite debilitating symptoms. They are not fully tested due to MDs fear and adherence to IDSA standards.

  30. Yes please accept the reality and update the guidelines to recognise chronic Lyme. Only by recognising and treating it can we reduce the numbers. This would also research into neurodegenerative diseases and Borrelia relationship that was on going in the late 1990's.

  31. please change the guidelines, look at the current research done, look at all the suffering people and families. you can not knowingly let this happen in America!
    change the IDSA Guidelines, please.

  32. please review the current research, do more research and testing, find better evidence upon which to base your guidelines. things change, and 5 years ago we didn’t know much about Lyme, CFS, FMS, and other related problem. it is a wasted day in which nothing new is learned. stop wasting our days! please!

    • Thank you for rontreipg on this awful disease. I suffer from late stage chronic lyme. Thankfully, I found a Good LLMD and now am on daily IV treatment.When will people *listen* to the patients who suffer needlessly and leave the doctors willing to treat this alone .STOP Prosecuting LLMD !!!

  33. Pingback: Lyme Treatment Guidelines « Cynthia Leonard

  34. Im upset with the people who are refusing to change these guide line,,please change then me and my daughter have it and nee proper treatment

  35. Unlawful “outdated” (IDSA) guidelines w/ clear and convincing evidence-based medicine cause serious physical and mental pain and suffering, disability, dependency, even death to innocent children, families, and grandchildren, possibly your own!

  36. Lyme’s guide lines are a CRIME to humanity! Stop this NOW. We have testing that works, treatments that are known about one personally that worked for me and many others that is NOT recognized is the rife technology. The pay offs by big pharmacy and the corruption of this is an act of human crime. Also not reporting this epidemic is a human crime. I lost 6 years of my early 20′s and was left with out diagnosis and had to pay out of pocket just to get a doc that could semi help, to find out that this is world wide. I WILL NOT BE SILENCED ANYMORE! CHANGE THIS!

  37. My family members suffer enough with Lyme. Why should we ignore treatments that would lessen and or relieve their symptoms. My husband’s heart ailments are ongoing. Should we also restrict his treatments and medications because one blood pressure medicine doesn’t work on everyone? Do Cardiologists with more patients lobby more frequently so they get more approved treatments.

  38. One need only see a friend or anybody in this condition to see changes need to happen . please hear the pleas from all thees people and make the necessary change..

  39. So many people and families are suffering because of your antiquated IDSA guidelines. There is so much more information that we now know about Lyme disease that should be included. The IDSA guideline should be an enabling tool and not a hindrance to knowledgeable physicians treating their patients for Lyme disease. How much more unnecessary suffering will happen before you do the right thing?

  40. do not allow this crime to continue. Please update these guidelines. We have people dying everyday and you do not acknowledge this disease.
    It’s time to stop denying Lyme exists.

  41. Please update these guidelines!! I have lyme disease and after 30 days of doxycycline the VA Clinic, Fergus Falls Minnesota turned their back on me!! Thank the Lord I found a lyme-literated medical doctor who has continued my treatment. Lyme is not a crime!!

  42. I have suffered needlessly from undiagnosed Lyme disease for at least
    40 years thanks to the ignorance of doctors and especially the misinformation and outright lies of the Centers for Disease Control. I
    consider the CDC to be far and away the number 1 enemy of those who
    suffer from Lyme.
    The CDC continues to peddle the outright lie that Lyme is confined to a
    small geographic area. Many doctors in Texas and elsewhere refuse to test for Lyme because they mistakenly think it doesn’t exist here. The CDC has encouraged doctors to rely on tick bites and bull’s eye rashes to
    diagnose Lyme. But many people with Lyme NEVER see ticks or a bull’s
    eye rash. The CDC continues to peddle the outright lie that most cases are
    easily cured with only short term antibiotics.

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