Medical panel keeps Lyme guidelines “as is”
Photo: Gary Wormser, MD, lead author of the IDSA guidelines, attributes many chronic Lyme symptoms to “the aches and pains of daily living.”
After reviewing 3,000 pages of evidence challenging advice in its 2006 Lyme disease medical guidelines, eight Infectious Diseases Society of America (IDSA) panelists voted to keep the 45-page document “as is.”
Dr. Robert Bransfield, the president of a group of community-based Lyme specialist physicians (ILADS) issued this statement in response:
“It’s a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic. The IDSA’s flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment.”
“By and large, the people on the IDSA panel who made this decision are ivory tower researchers,” says Bransfield. “They’re not the doctors on the front lines looking into the eyes and faces of these very sick patients, performing exams and then assuming long term responsibility for dealing with patients suffering from chronic Lyme.”
Bransfield and ILADS point to a number of discrepancies and other concerns about the vote, including:
—68 out of 69 of the original 2006 recommendations under review were OK’d with unanimous votes. “How can there be such a total consensus with any scientific issue?” asked Bransfield. “It’s highly suspect and beyond comprehension.”
—If Lyme cannot be chronic, then why did the guideline’s authors acquire 200 Lyme disease patents and receive $76 million in Federal funds to study it?
—The original guidelines are not only controversial, but written back in 2006, are considered old and out of date.
—The CDC has also advised for many years that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate 50% of the time.
—The IDSA’s decision reinforces that doctors have little control when it comes to treating diseases such as Lyme. Researchers and insurance companies remain in the driver’s seat of diagnosis and treatment.
In May 2008, the IDSA agreed to re-evaluate its Lyme disease guidelines as part of a settlement agreement for an antitrust investigation by the Attorney General of Connecticut, Richard Blumenthal. The crew of the documentary, UNDER OUR SKIN, covered this investigation as it unfolded, and revealed some of the evidence alluded to in Blumenthal’s investigation, including the significant conflicts of interest among the original IDSA guidelines panelists, suppression of scientific evidence by panelists, and exclusion of panel members with opposing viewpoints.
During a telephone press conference on the IDSA’s announcement of the ruling, IDSA president Richard Whitley, MD, said he thought Blumenthal had been “misguided by the [Lyme] activists” and that the antitrust suit against IDSA wasn’t “justified or warranted.”
- To read the IDSA report, click here.
- To read the ILADS response, click here.
- To download a detailed history of the IDSA investigation, click here.
- To read the Attorney General’s release on the investigation, click here.
- To read UNDER OUR SKIN’s Jordan Fisher-Smith’s letter to the IDSA and learn what you can do, click here.
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Take an ethically-challenged group, let them police themselves, where they hire an ex-president of their group to chair the policing panel and what to do you expect?
These people have no shame.
But worse, our system doesn’t care. It will continue to turn to them as “the authority” and allow insurance companies to deny us care. It will also make sure that the proper research is never done.
We must find a way to get the entire system to dismiss them and turn to others for direction on this subject.
What do I click to “throw up”????????????
This is absolutely absurd and criminal. These people have obviously not looked into their patients eyes; nor have they had to dress their teenage daughter and look into her eyes knowing that the disease could be treated if it weren’t for “medical politics”.
May God have mercy on those who are forcing pain upon our society!
[...] panel keeps Lyme guidelines “as is”…freak'n bastards! http://underourskin.com/blog/?p=794 via @addthis [...]
On Aug 5, 1998 I came down with a 104.5 degree fever and a burning cramp in my back. The cramp is still there. My fevers went away after nearly a year. About a month after an operation where they took out my appendix and gallbladder. I searched for a diagnosis for 6 years until finally (via urine pcr – DNA test) proved the bacteria was in my system… See More. Then I went through 2 separate 6 month courses of IV antibiotics, 3 bags a day. The cramp in my back got much worse during the treatments and then slowly settled down over the next year. I’ve had tests done that show nerve damage has occurred in my back and legs. I lost my job, and my marriage ended, and this issue has alienated me from most of my friends and family. The disease is very hard to understand and accept by those close to you… After a long battle with long-term insurance and our Social Security administration, I am now supported financially by them. I had to stop working after my second IV treatment. Today, I am still alive but no longer contributing to much to society. I have my kids to raise and each day I survive and try to count my blessings for still being alive. However, my life has been derailed, and the quality of my life has severely diminished. I exist, but feel as if I am in a prison that limits my ability to interact with the rest of the world. I am disappointed in the medical community who flatly refused to consider lyme as a possibility here in NC. At this point, I am only treating my symptoms because there is no approved ‘cure’. I have given up. My ten year effort to identify what was wrong with me and ‘fix it’ nearly killed me. Our doctors need to be educated but this legislative panel is so strongly against lyme awareness that it’s political suicide for a doctor to be open minded toward Lyme. It makes me wonder, about the conspiracy theories… how lyme was created… the stories about Block or Plum Island and the chemical warfare research that went on in it… This governing panel of ID doctors seem to be motivated by something other than facts. Usually, when things don’t add up it’s because someone is distorting the truth to cover something up. Is it possible the reason lyme is so difficult to diagnose and treat is because it was designed that way? Was the US Government responsible for the introduction of lyme into America or possibly not the introduction but the proliferation? There is more than one book about this theory available… You can find one I’ve read at this URL on Amazon–> http://www.amazon.com/Lab-257-Disturbing-Governments-Laboratory/dp/0060011416/ref=sr_1_2?ie=UTF8&s=books&qid=1272796074&sr=1-2 The whole situation stinks like a conspiracy… I don’t have the facts or know the truth but I am certain of 2 things, 1. there is a truth and someone knows it and 2. there is an organized effort to distort the truth. Additionally, that distortion would have to be precipitated by a governing organization like this.
To make matters worse… I don’t believe they are ‘elected officials’ so we’re at their mercy until someone above them decides to make changes (I have no idea if this is even possible). I’ve read that we’ve already discovered several relationships where a conflict of interest clearly influenced the original author’s opinions… They should be ashamed, reprimanded, replaced, because they operated knowing they were unfairly biased in the first report on the ‘lyme guidelines’… but then to stamp the document created under known bias as ‘correct’, is completely unprofessional and should be a signal to everyone that corruption is present and clearly influencing the conclusions of this governing panel… This kind of abuse and corruption has infiltrated every government in history and that’s why it’s so important to limit governments power. There is something stronger than common sense, stronger than professional shame, stronger than their oath to ‘do no harm’, motivating (in fact I’ll go further and say controlling) these doctors.
This absolutely makes me sick. I am young and have the aches and pains of an 80 year old. Explain that Wormser – I’m going to dignify calling you a Dr. sit in your ivory tower so you don’t have to watch all of us suffer. How can eight people have control over the hundreds of thousands of people who have chronic disease? I feel like we’re back to when the world was flat!!!!!
Ugh my new computer is not cooperating. Lying in bed and typing can be tricky. I don’t think i can rewrite what i just wrote, but i will say this – i would not wish my rotten, painful, keeping-me-stuck-in-bed when i would rather be out having a life illness on anyone. BUT there are a good half dozen i wish could spend a day in my body, or with every symptom i go through. This chucklehead makes seven.
). If your doctor is being a poop head, not keeping up with the latest research? FIGHT and find one who is and who will treat you with respect. These people swore oaths to not harm us, and now there are actually cases of women with Fibromyalgia and Lyme who are experiencing Post Traumatic Stress Disorder *caused* by jerky doctors. That’s just not acceptable. Find the good ones. Do your own research always. And please remember, you are not alone. {{gentle hugs}}
Doctors work for us, friends. We pay them to provide a service (i wish i could have all the money back i spent on mis-diagnoses! ooh i like that thought
During the review panel hearings, one of the panelists complained about the statement in the guidelines that attributes many chronic Lyme symptoms to “the aches and pains of daily living.” The panelist suggested that it disrespected patients’ suffering. Then the panelists voted 8-0 that “no change was necessary” to the guidelines. What happened?
During the review panel hearings, one of the panelists complained about the statement in the guidelines that attributes many chronic Lyme symptoms to “the aches and pains of daily living.” The panelist suggested that it disrespected patients’ suffering.
But the final report gave as one of its reasons against the existence of chronic Lyme that its symptoms are “nonspecific.” The report also stated that Lyme’s symptoms are “common in the general population.” However, even the guidelines admit that Lyme’s symptoms can be severe and continue during what it calls Post-Lyme Syndrome. But the panelists voted 8-0 that “no change was necessary” to the guidelines.
What happened to the dissent? What persuaded him that people with what it calls Post Lyme Syndrome suffer “the aches and pains of daily living.” After all, such an idea means that the guidelines’ Post-Lyme Syndrome doesn’t exist either!
Persecution is happening to Andrew Wakefield, a Doctor who is standing up for the truth, much in the same way the LLMD’s are persecuted. Shame on BIG PHARMA and its puppets.
One day one of these IDSA’s docs will be bitten by an infected tick and get sick. Only then will they wake up and understand how devastating their archaic guidelines are. (hmmm…unless they don’t take their guidelines to heart and treat by ILADS standards!)
Every mention of lyme disease by patients to a stranger in the grocery store, or a journalist who has the instincts to follow the money is a step closer to the goal of all people with lyme disease and their courageous doctors. THE TRUTH, AND A CURE.
This won’t happen unless all of us start speaking up LOUDLY and incessantly and demand the necessary changes. My daughter, Nicole age 17 is doing just that. She is making a difference from her wheelchair, even with her 1 minute short term memory. Her blog, http://www.bitemeback.blogspot.com/ is read by people from Vancouver Island to North Carolina, and California to Nova Scotia. She speaks from her heart to politicians, lions clubs, rotary, medical students, on the steps of the legislature…anyone who will listen. She hopes to become a doctor once she regains her health. She was one of those featured in the Canadian lyme documentary done by CTV W5 called out of the wild available online to view.
One of Nicole’s favourite things to do is to search for just the right quote and here is what she came up with tonight;
‘The future depends on what you do in the present’. Ghandi.
I’ve had a long-standing joke about how people’s names and what they do in their lives often (not always) seem to match fairly well.
Thank you for giving me proof of my theory,
Gary WORMSer. I enjoy the chuckle at his expense, but I think it’s okay considering he enjoys what he is doing at the expense of thousands of people suffering. I often picture a giant talking worm in my head when I think of Gary. It usually spews forth some green gobbly goop from it’s mouth when it speaks.
In fact the meaning of the name Wormser: “German: habitational name for someone from Worms.”
Therein lies the problem. Gary Wormser descended from worms.
I have a name for the second movie. It should be called “Inglorius Lymeturds.” Rather than having a group of men who go killing Nazis. We could have a group of very irresistable women who seduce some IDSA physicians. Of course these irresistable women would also have untreated Lyme disease, but the IDSA doctors would not be informed of this until after several seductions have taken place. What do you think?
It’s just a light-hearted chuckle I bring you. Every Lymie needs one now and then. Can I blame the sarcasm on the Lyme or is that too much of a stretch?
This places Atty General Richard Blumenthol in an embarrassing situation. Despite his work to prove need for a second panel and the reasons why, I hope very much he takes this personally. Basically this panel is sending the message, “Ha Ha” you can’t get us Doc’s, we told you once, don’t mess with us again.
I’ve heard over and over the truth eventually comes out. And I’ve come to believe it because I’ve lived long enough to see it. The truth will come out. I just hope this decision is challenged quickly. This is wrong.
I have had Lyme for over 18 years and just recently found a LLMD that found my Lyme co-infections. So many doctors, so many tests only to be told, ‘you are too young to be sick’ or better yet ‘you are too pretty to be ill’.
…I am so angry that this board could be so blind,dumb and blind never mind GREEDY – well I know they would see it if it was one them or a family member. Is there anything that anyone can do. Writing letters to certain people, because soooo many are suffering.
…I’m tired of not being to far from my bed because my legs feel so weak. Or better yet getting dressed up and having laid low for days just to be able to go somewhere. Then after going to say my folks’ house, or to the doctors, etc; being in bed for days!
…I want my life back, it is criminal that anyone could have that kind of power!!! Uggghhh!!!!
…Hope your day is not to painful. ((Soft Hugs))
Jeannie