Chronic Lyme Disease news

[minnesotasmith]

http://www.msnbc.msn.com/id/24433785/

Chronic Lyme disease? Docs may change stance
National group had battled patients over whether condition even exists
Douglas Healey / AP
Diane Blanchard of Greenwich, Conn., was diagnosed with Lyme disease in 1987 and remained sick for the next 10 years.


updated 6:37 p.m. MT, Fri., May. 2, 2008

HARTFORD, Conn. - Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which say there's no evidence long-term antibiotics can cure "chronic Lyme" disease — or even that such a condition exists.

The agreement settles an unprecedented antitrust investigation by Connecticut's attorney general over the matter. The doctors group makes clear that current guidance for treating Lyme disease remains in place.
But that didn't stop claims of success by the attorney general and people who believe they suffer long-term effects of the tick-borne disease.

"It's a great victory for patients," said Pat Smith, president of the Lyme Disease Association, a national nonprofit group based in New Jersey. "It's time that Lyme patients got the respect they deserve."

The agreement, announced Thursday, calls for the doctors group to form a new panel of experts to review standards for treating Lyme disease. The Infectious Diseases Society says it agreed to the deal in part because the panel must be made up of doctors and scientists.

Lyme disease can be hard to diagnose with its vague, flu-like symptoms; the most obvious sign is its trademark round red rash. Usually, it's easily cured with a few weeks of antibiotics. Those not promptly treated can develop arthritis, meningitis and other serious illnesses.
About 20,000 new cases of Lyme disease are reported every year, but experts believe the annual total may be five times higher.

Connecticut leads the nation in reported cases and has been a battleground in the national debate over treatment. Lyme disease is named after the Connecticut town of Lyme, where the illness was first discovered in 1975. And the state is home to a number of people who claim they suffer long-term problems from Lyme disease — problems that many doctors are unable to confirm or treat.

The Infectious Diseases Society says it's never been proven whether these patients still have Lyme disease or something else. The group continues to defend its standards, which say short-term antibiotics are effective for nearly all patients. Long-term antibiotics are unproven and potentially dangerous, because overuse of the drugs can lead to drug-resistant infections, the society says.

"We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer ... and we look forward to the opportunity to put to rest any questions about them," said Dr. Donald Poretz, the society's president.

The society will consider a variety of scientific evidence and determine whether the 2006 guidelines are justified or need revision.

Sufferers say guidelines discourage needed treatment
The guidelines are important because they discourage adequate treatment, advocates of chronic Lyme sufferers say. Perhaps just as significant is that insurance companies refuse to pay for long-term antibiotics to treat chronic Lyme.

"We are delighted with this settlement," said Diane Blanchard of Greenwich, who said she was sick with Lyme disease for 10 years before a long-term antibiotic treatment relieved her symptoms in the late 1990s.
"The IDSA guidelines are now clouded by this decision. My greatest hope is that patients will regain their right to treatment," said Blanchard, now co-president of the advocacy group Time for Lyme.

Philadelphia-based health insurer Cigna Corp. said it is reviewing the agreement to see if any changes in policies are needed. Cigna covers up to 28 days of intravenous antibiotic therapy for Lyme disease and, like many insurers, cites the Infectious Diseases Society's guidelines in its coverage plan.

Cigna does not pay for "repeated or prolonged" courses of antibiotics, saying they are "experimental, investigational or unproven."

Connecticut Attorney General Richard Blumenthal and advocates say the agreement is the first time the medical establishment has bowed to the pressure of a potential court fight and agreed to re-evaluate care standards.
"My main goal all along has been a process that is fair, open and free of conflicts of interest," Blumenthal said.

Blumenthal said his investigation found that some of the 14 experts who approved the 2006 guidelines got consulting fees, research grants and stock ownership from drug companies and other businesses that have a stake in the treatment and diagnosis of Lyme disease.
He would not name the panel members or the companies. He said the backgrounds of the new experts looking at the guidelines will be checked for any potential conflicts.
The issue involves antitrust law, Blumenthal said, because the panel excluded some opinions and evidence that may have supported other treatments in development, including vaccines.
Blumenthal's office did not take a position on the proper treatment of the disease or whether chronic Lyme disease exists.

The Infectious Diseases Society denied any conflict of interest.

"Panel members do not stand to profit from any recommendation in the guidelines," the group said in statement. "In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy."

[orangebug]

This is a very important decision, given that it was used by managed care companies to limit access to treatent. Unfotunately, use of industry connected "experts" has become the routine rather than the exception in developing guidelines for management of illnesses. While there is much quackery in "alternative medicine", the lack of ethics among corporate medical experts has set up the probability of a huge counter-reaction.

[dessertrat]

Yes, I had a client denied disability, despite 20 lesions on her brain, identified by MRI, because the neurologist believed they were caused by chronic Lyme disease. So of course her disability insurer said "there's no such thing as chronic Lyme disease--therefore she can't have lesions." This, despite radiologic evidence of lesions.

[Appalachian Tater]

Yes, I had a client denied disability, despite 20 lesions on her brain, identified by MRI, because the neurologist believed they were caused by chronic Lyme disease. So of course her disability insurer said "there's no such thing as chronic Lyme disease--therefore she can't have lesions." This, despite radiologic evidence of lesions.She had idiopathic legions that the neurologist believed to be caused by Lyme disease. That's very different from having lesions caused by Lyme.

[Appalachian Tater]

I have never seen scientific evidence proving the existence of chronic Lyme disease. Suing scientists to get them to be unscientific is as counter-productive as filtering scientific studies to suit political purposes.

[Skidsteer]

She had idiopathic legions that the neurologist believed to be caused by Lyme disease. That's very different from having lesions caused by Lyme.


I have never seen scientific evidence proving the existence of chronic Lyme disease. Suing scientists to get them to be unscientific is as counter-productive as filtering scientific studies to suit political purposes.

The insurance company should pony up regardless. She's being penalized for her choice of Neurologist by a company looking for a loophole. They probably made her see that Neurologist in the first place.

[orangebug]

You are close to the insurer's deception. Because a diagnosis (actually a differential diagnosis with possibly other more morbid options available but equally unproveable)was made for Chronic Lyme Disease, the insurer denies that since they disbelieve in Chronic Lyme Disease - their insured must not have any illness. They can disbelieve in Chronice Lyme Disease as the IDSA panel (populated by several insurance company cronies) says there is no such illness.

For many years, it was controversial that Lyme Disease existed at all, as it was impossible during the 70's to isolate an infectious agent, demonstrate a vector or to form a consensus regarding treatment. It remains a difficult diagnosis due to delays in presentation, poor reliability of immune testing, variable clinical presentation and variable clinical courses. To say that one hasn't seen scientific evidence of chronic Lyme Disease only suggests 1)lack of familiarity with the literature; 2) a bias against such literature. In the case of the IDSA panel, that bias appears related to financial conflict of interest.

It is possible that Chronic Lyme Disease doesn't exist, or is an autoimmune disorder provoked by the acute disease. We won't know this until a more credible panel actually provides a consensus including all available literature.

[Appalachian Tater]

To say that one hasn't seen scientific evidence of chronic Lyme Disease only suggests 1)lack of familiarity with the literature; 2) a bias against such literature. I'm not biased against it, I haven't seen any. I find Lyme disease in general and the possibility of chronic Lyme disease in particular very fascinating and so am biased towards the possibility of it existing if anything. But there just isn't any reliable evidence.

There are a bunch of quacks testing for it and treating it and billing insurance companies for it. No doubt there are also shysters trying to get them to pay for it.

Several years ago, an HMO I worked for had to deny pre-authorization for very expensive laboratory tests that supposedly could only be done at one lab because what the test was supposed to look at was a non-existent, "proprietary", fraudulent marker for chronic Lyme. Treatment guidelines and the health care professionals employed by HMOs play a role in protecting the patient from unnecessary and potentially harmful treatment.

http://www.yale.edu/opa/newsr/07-10-04-03.all.html

[take-a-knee]

I have never seen scientific evidence proving the existence of chronic Lyme disease. Suing scientists to get them to be unscientific is as counter-productive as filtering scientific studies to suit political purposes.

Never heard of chronic infection with spirochetes (not far removed from the riketsial that causes Lyme)? Like maybe syphillis? They didn't have a test for that one for a long time IIRC.

[Pokey2006]

Just because there's no proof of a disease doesn't mean it exists. If a large number of people proven to have had Lyme disease say they have chronic symptoms after the fact, that tells me something.

I knew someone a few years ago who said he had lingering Lyme disease issues. His lifestyle was so healthy, I used to make fun of him, the way he ate peanut butter sandwiches on wheat bread and ran in road races. So if he complained about having health problems, that was for real.

Science is not set in stone. It is fluid, and changes over the years as new discoveries are made. The problem comes when (corporate/paid) scientists claim that something just is not possible because there is no proof. Then why have science at all?

Thanks for posting this article. It's an interesting issue.

[Appalachian Tater]

His lifestyle was so healthy, I used to make fun of him, the way he ate peanut butter sandwiches on wheat bread and ran in road races.Peanut butter is mostly fat, not really very healthy in large quantities.


Science is not set in stone. It is fluid, and changes over the years as new discoveries are made. The problem comes when (corporate/paid) scientists claim that something just is not possible because there is no proof. Then why have science at all?That's backwards. These people are trying to get scientists to say something is real when there is no proof. If that is the case, then why have science at all?

[Appalachian Tater]

Never heard of chronic infection with spirochetes (not far removed from the riketsial that causes Lyme)? Like maybe syphillis? They didn't have a test for that one for a long time IIRC.That is why the possibility is so fascinating.

Unfortunately, not only has chronic Lyme NOT been proven to exist, the treatments patients who claim to have it receive have not been proven to be beneficial to them.

[dessertrat]

There's a lot of literature on it. I handled a couple of malpractice cases as a law clerk dealing with chronic Lyme issues. There are plenty of people publishing in this field, and plenty of insurers denying it helps, because IV antibiotics are very, very expensive.

[dessertrat]

She had idiopathic legions that the neurologist believed to be caused by Lyme disease. That's very different from having lesions caused by Lyme.

You are correct that it isn't proof of the cause of the lesions. But my point is that insurers will use just about any reason to deny a claim. She had an illness.

[Pokey2006]

Peanut butter is mostly fat, not really very healthy in large quantities.

That's backwards. These people are trying to get scientists to say something is real when there is no proof. If that is the case, then why have science at all?

So until scientists say there's proof, that means it doesn't exist? So what happens in the meantime? The time between the theory and the proof?

I thought science was all about proving or disproving hypotheses, not about dealing with things that have already been proven or disproven. That is what science is.

[Pokey2006]

And who said that the only healthy foods were fat-free? Peanut butter is very much a healthy food. Who cares how much fat is in it? That's irrelevant.

[orangebug]

This thread is about to be hijacked by someone who believes HMO's protect someone other than stock holders.

Medicine is not science. We attempt to use scientific methods to reach consensus regarding diagnosis and treatment. Over the past 20 years, we have seen accounting methods employed to limit access to medical care. We have seen limitation of research to corporations who are able to patent and advertise their fruit of research. We have seen a significant loss of pure scientific research as politics and financial interests have limited areas of research and available money for grants.

And now an Attorney General has reached a settlement with a professional board following discovery of ethical breaches. The outcome will be a much more credible review of literature as IDSA formulates guidelines less contaminated with financial conflict of interest.

[Odd Thomas]

That's backwards. These people are trying to get scientists to say something is real when there is no proof. If that is the case, then why have science at all?

Medicine isn't science. The goal of science is to understand and to explain, the goal of medicine is to heal.

Lyme disease is diagnosed based on symptoms. The only qualifier for "chronic" Lyme disease to be "real" is a continuation of the symptoms, not a scientific explanation for the continuation of the symptoms.

[Appalachian Tater]

And who said that the only healthy foods were fat-free? Peanut butter is very much a healthy food. Who cares how much fat is in it? That's irrelevant.
Pure organic peanut butter isn't so awful. Unfortunately, most commercial peanut butter contains a good bit of added saturated fat, plus sugars and unpronounceables. I have never researched the use of pesticides on peanuts but I know that they are used.

[Appalachian Tater]

This thread is about to be hijacked by someone who believes HMO's protect someone other than stock holders.

Medicine is not science. We attempt to use scientific methods to reach consensus regarding diagnosis and treatment. Over the past 20 years, we have seen accounting methods employed to limit access to medical care. We have seen limitation of research to corporations who are able to patent and advertise their fruit of research. We have seen a significant loss of pure scientific research as politics and financial interests have limited areas of research and available money for grants.

And now an Attorney General has reached a settlement with a professional board following discovery of ethical breaches. The outcome will be a much more credible review of literature as IDSA formulates guidelines less contaminated with financial conflict of interest.We spend more money on health care than other nations and have little to show for it except a widening gap in lifespan between the rich and poor.


Medicine isn't science. The goal of science is to understand and to explain, the goal of medicine is to heal. That sounds great and gives quacks a free pass. Therapeutic touch!


Lyme disease is diagnosed based on symptoms. The only qualifier for "chronic" Lyme disease to be "real" is a continuation of the symptoms, not a scientific explanation for the continuation of the symptoms.Actually, Lyme disease is caused by a particular organism. Most of the symptoms are fairly vague (except for the bullseye rash).

[orangebug]

Actually, Lyme disease diagnosis is made by clinical signs and symptoms that rarely involve direct identification of the infectious agent. The "bull's eye rash" is similarly non-specific, and found in less than half of those ultimately diagnosed with the condition.

HMO's have found new life treating the very poor in Medicaid programs. Your point about disparities in health between rich and poor is well taken. The practice of medicine has transformed from a profession to an industry thanks to the for profit HMO's and their ilk.

[Appalachian Tater]

Actually, Lyme disease diagnosis is made by clinical signs and symptoms that rarely involve direct identification of the infectious agent. The "bull's eye rash" is similarly non-specific, and found in less than half of those ultimately diagnosed with the condition. If it is non-specific, in which other diseases is erythema migrans found?


HMO's have found new life treating the very poor in Medicaid programs. Your point about disparities in health between rich and poor is well taken. The practice of medicine has transformed from a profession to an industry thanks to the for profit HMO's and their ilk.My internist stopped taking insurance. He takes cash and checks. You can file on your own for whatever your insurance company will give you if it will give you anything. There are apparently plenty of people who can pay $400 for a simple encounter plus labs, imaging, etc. He does not have to treat poor people or deal with insurance companies, and he practices his profession as he sees fit with no insurance company oversight.

There are limited funds available for health care. Say what you will, we spend much more than other countries with nothing to show for it. In other words, we waste billions upon billions a year on health care that produces no health.

[Frosty]

That's backwards. These people are trying to get scientists to say something is real when there is no proof. That's not what is being said at all. That is the opposite of what is happening. People are sick. They want the scientists to find out why and how and what the treatment is. The "scientists" are saying that something does not exist because that have no proof acceptable to them that it does exist. Lack of proof of existence is not proof of nonexistence. Those who claim otherwise are NOT scientists.

People are sick and want treatment. That is the crux of the whole argument. It is fine and cute for you and others to play word games if you are not the victims and have no human empathy. It must be great fun or the pay must be high for you and others to deny care by playing word games. "We'll will not treat this person because her symtoms are similar to a disease which we have declared to not exist." Forget what it is called. Call it whatever you want, just treat it.

But no, the goal is not to treat people. It is to keep costs down by treating as little as possible and to use chicanery and unethical "scientists" and "doctors" to Dissemble for Dollars.

If people are sick, they are sick. If they are sick month and month, year after year, they are chronically sick.

It is an uphill fight when medical care is determined by accountants. When "doctors" and "scientists" sell themselves to the accountants, the victims are the sick.

All people want is for the sick to be treated. If a "scientist" says, "This ill person should not be treated because we think she has something we don't believe exists," he is simply not a scientist. He is a paid employee of someone, and has a degree, but using the definition of a scientist as one who follows the doctrines expected of a scientist, no, he is not a scientist. You can call him one, but he is not. He is simply Frederick Stare reincarnated. A man who sold his integrity to an industry for $$$. "Sugar is good for kids," said the "scientist" in the pay of the sugar industry. Blech.

I was going to say, "Don't get me started," but it is obviously too late for that.

Who is sicker? The ill or the people who consipre to withhold treatment and let others suffer in the name of money.

Blech.

[Skidsteer]

Nice rant.

You left out lawyers, though.

[Appalachian Tater]

People are sick and want treatment.

People who are sick need treatment that is effective and safe.

[orangebug]

If it is non-specific, in which other diseases is erythema migrans found?

My internist stopped taking insurance. He takes cash and checks. You can file on your own for whatever your insurance company will give you if it will give you anything. There are apparently plenty of people who can pay $400 for a simple encounter plus labs, imaging, etc. He does not have to treat poor people or deal with insurance companies, and he practices his profession as he sees fit with no insurance company oversight.

There are limited funds available for health care. Say what you will, we spend much more than other countries with nothing to show for it. In other words, we waste billions upon billions a year on health care that produces no health.It may be seen in other tick vector illnesses, but is considered pathogmemonic, even though present in less than 50 per cent of cases. Absence of the rash or history of the rash doesn't prove/disprove the diagnosis.

So, you worked for an HMO and go to a doctor who won't knuckle under the Managed Care Monolith. Sounds like you have a great deal of confidence in the product you sold.

[Appalachian Tater]

So, you worked for an HMO and go to a doctor who won't knuckle under the Managed Care Monolith. Went to. Of course, I can't afford him now. And I have never "sold" an HMO product to anyone.

[dessertrat]

Nice rant.

You left out lawyers, though.

For every lawyer working to deny treatment, there's one (we hope) working to get people treated.

[oldfivetango]

An acquaintance of mine was bitten by a tick,developed the dreaded
"bullseye",was treated in a hospital and was in such a feverish almost
comalike state that he has no recollection at all of THREE days.
Gee,if that ain't lyme disease then just what is?

I on the other hand was treated within 24 hours of the bullseye rash
and have no ill effects other than some arthritic symptoms that are more
likely the effects of not aging all that well.
Oldfivetango

[Skidsteer]

For every lawyer working to deny treatment, there's one (we hope) working to get people treated.

Can you get them to wear name tags or something? ;)

[Appalachian Tater]

It may be seen in other tick vector illnesses, but is considered pathogmemonic, even though present in less than 50 per cent of cases. Which other tick-borne diseases in particular? Do you mean it is pathognomonic for a group of tick-borne diseases so it is non-specific for Lyme?

My understanding was it was unique to Lyme disease. After much research I had concluded it occurred in many cases but certainly not all but that Lyme is frequently used as a catch-all for a group of tick-borne diseases in practice so no one really knows how frequently the bullseye rash occurs in Lyme. And it may even be present and not noticed.

[Appalachian Tater]

An acquaintance of mine was bitten by a tick,developed the dreaded
"bullseye",was treated in a hospital and was in such a feverish almost
comalike state that he has no recollection at all of THREE days.
Gee,if that ain't lyme disease then just what is?

I on the other hand was treated within 24 hours of the bullseye rash
and have no ill effects other than some arthritic symptoms that are more
likely the effects of not aging all that well.
OldfivetangoI had the rash, got treatment within 24 hours of noticing it, but it was rather large when I noticed it, and had no other symptoms. Except really I had almost all the other symptoms (mild) before, during, and afterwards, and to this day. I guess I could say I have chronic Lyme disease!

[Appalachian Tater]

For every lawyer working to deny treatment, there's one (we hope) working to get people treated.In my years of working with and for insurers and providers, I never encountered a situation where a lawyer was working to prevent treatment, although I am sure the HMO lawyers have to deal with patients' lawyers when the MDs have denied payment for treatment and the patient has involved a lawyer. I'm really not sure what good a lawyer would do in most situations, there are internal appeals and external appeals by governmental and quasi-governmental private parties. They are heavily prejudiced towards the patient.

And that bears emphasizing: it is up to providers to provide medically necessary treatment. Insurers do not authorize or deny treatment, they authorize or deny payment for treatment, and they are required to use written guidelines and standards. This is a crucial point.

[orangebug]

Written guidelines and standards that are often proprietary secrets, or created by committees such as the one this thread was focusing on.

The patient may choose to pay for the treatment, or decide that medically necessary treatment is to be avoided. The physician is held liable if treatment decisions are limited due to financial factors, rather than clinical issues.

And HMO/Insurer CEOs make boodles of bucks while heavily lobbying and supporting certain candidates. Patient appeals are typically beset by delays, with courts taken out of the options with binding arbitration arranged by the HMO.

Vested interests continue to rule the day for the managed care monolith.

[Appalachian Tater]

Written guidelines and standards that are often proprietary secrets, or created by committees such as the one this thread was focusing on.

The patient may choose to pay for the treatment, or decide that medically necessary treatment is to be avoided. The physician is held liable if treatment decisions are limited due to financial factors, rather than clinical issues.

And HMO/Insurer CEOs make boodles of bucks while heavily lobbying and supporting certain candidates. Patient appeals are typically beset by delays, with courts taken out of the options with binding arbitration arranged by the HMO.

Vested interests continue to rule the day for the managed care monolith.These are some of the reasons we should immediately move to a single-payor system.

[orangebug]

Last for me on this thread.

Single payer system likely to be enacted from the current candidates will look a lot like Medicare Part D which provides no real benefit except to: !) politicians who brag what a great thing they enacted; 2) insurance companies that are allowed profit and limited formularies; 3) pharmaceutical companies who never have to discount their drugs. It has created more overhead/administrative hassles for physicians, pharmacists and caretakers. Managed Care intrusions will persist.

Otherwise, the Canadian system with underfunding and criminalization of private care resources would create an equally taxing burden on an aging population. We haven't even shown the political courage to provide for our veterans or injured soldiers adequately.

[take-a-knee]

These are some of the reasons we should immediately move to a single-payor system.

Tater, when you post it is most often a thoughtful, well-reasoned comment that, even if I don't agree with, I understand where you are coming from and respect your opinion. This however, is total BS.

[Appalachian Tater]

Tater, when you post it is most often a thoughtful, well-reasoned comment that, even if I don't agree with, I understand where you are coming from and respect your opinion. Obviously you don't spend much time in the politics forum.

[Skidsteer]

Tater, when you post it is most often a thoughtful, well-reasoned comment that, even if I don't agree with, I understand where you are coming from and respect your opinion. This however, is total BS.


Obviously you don't spend much time in the politics forum.

Now that was funny right there. :D

[take-a-knee]

Obviously you don't spend much time in the politics forum.

I'm a middle-aged man who's normotensive (about 115/70 or so), I'd like to remain that way. I'm sure the political forum is just like the occasional "gun thread", the same cast of players, saying the same things ad nauseum with nary a changed opinion.

[Odd Thomas]

That sounds great and gives quacks a free pass. Therapeutic touch!

How does the Hippocratic oath (which defines what Medicine is) give quacks a free pass?


Actually, Lyme disease is caused by a particular organism. Most of the symptoms are fairly vague (except for the bullseye rash).

What you said didn't contradict what I said. How it's diagnosed and how it's caused are two different things.

[minnesotasmith]

Comments (and many are substantive, with other links) are at the link.

http://www.freerepublic.com/focus/f-news/2015141/posts

Lyme disease care under fire (http://www.freerepublic.com/focus/f-news/2015141/posts)


By Robert Miller Staff Writer

"In the battle over how best to treat Lyme disease, a new settlement between Attorney General Richard Blumenthal and a major medical group might seem to offer at least a little hope of expanded treatment for those with the tick-borne disease.
That, however, would involve a change in the lines of debate over the disease, and it's not clear there will be any yielding.
The settlement, reached this month between Blumenthal and the Infectious Diseases Society of America, provides for a review of the IDSA's guidelines for treating Lyme disease -- guidelines that a second group of doctors, the International Lyme and Associated Diseases Society, say are strict and inflexible to the point of harming some patients.
But the IDSA's guidelines will remain unchanged until that review ends. And while the review process will include the participation of an ombudsman, the guarantee that opposing voices will get their say, and hearings that will be broadcast on the Internet, they may not yield a single change, said Dr. Eugene Shapiro, a pediatrician, epidemiologist and professor of investigative medicine with the Yale School of Medicine in New Haven.
Asked last week if the IDSA guidelines could remained unchanged after the review, Shapiro said flatly, "Yes."
" If the scientific data recommends a change, we'll be happy to change," Shapiro said. "But we have 25 years of research on Lyme disease. We feel very comfortable the guidelines will stand up to any scientific scrutiny."
Doctors who are opposed to the IDSA guidelines said they believe there's at least a chance their position -- that infection from the Lyme disease bacteria Borrellia burgdorferi can create a chronic illness that needs long-term treatment with antibiotics -- will gain some credence with the review panel.
" I hope it will lead to an improvement to patient care," said Dr. Steven Phillips of Wilton, who has been one of the doctors opposing the strict guidelines in favor of those in which doctors can tailor treatment to individual patients.
Phillips is a past president of the International Lyme and Associated Diseases Society, which believes there is ample scientific evidence to treat people for chronic Lyme disease.
" We've looked at the same evidence as IDSA and come up with significantly different conclusions," said Dr. Daniel Cameron of Mount Kisco, N.Y., the current president of the group.
This isn't a merely a spat between two opposing medical groups.
In a press release, Blumenthal's office pointed out that insurance companies now use the IDSA guidelines to restrict care for patients and refuse to pay for long-term antibiotic care.
" It's a good way to have people denied insurance," said Maggie Shaw of Newtown, a member of that town's Lyme Disease Task Force. "It also puts the fear factor in doctors.
" Here are two standards of care, but only one gets recognized," Shaw said. "It's because of the stranglehold the IDSA has on this."
The settlement between Blumenthal and the IDSA came after Blumenthal sued the group -- which represents about 8,000 infectious disease specialists in the United States -- in 2006 for antitrust violations.
Blumenthal said his investigation discovered many examples of conflicts of interest among the doctors who wrote the IDSA guidelines. He also said they refused to "accept or meaningfully consider" any evidence concerning chronic Lyme disease in writing the 2006 guidelines and blocked the appointments of scientists and physicians who differed with the IDSA view that all Lyme disease can be treated with two to four weeks of antibiotics and that chronic Lyme disease does not exist." Our focus has not been on medicine but the process," Blumenthal said. "There may ha
ve been violation of the law and it's my job to enforce the law." Dr. Sam Donta, a Massachusetts-based infectious disease spe
cialist, was on the panel that drew up the IDSA guidelines. Donta said he refused to sign off on the guidelines when the group refused to acknowledge that chronic Lyme disease is a problem.
--The issue should not be whether there's chronic Lyme disease, but why we're seeing these patients," he said
The review process established in the settlement, Blumenthal said, will be "fair, open and free of conflict." Donta said Friday he hopes to serve on the panel.
But in its own press release on the settlement, the IDSA emphatically denies there was any "significant" conflict of interest on the part of any of the doctors who wrote the 2006 guidelines, or that they excluded conflicting points of view while writing them.
In fact, Shapiro said, having stricter guidelines means doctors who follow the IDSA protocols see patients fewer times and prescribe only short-term regimens of generic antibiotics.
Shapiro said the IDSA agreed to the settlement simply to end any attempt by Blumenthal to take the case to court.
" The alternative was spending a lot of money in an expensive lawsuit," he said.
Shapiro said all the scientific evidence on long-term treatment of Lyme disease, including five double-blind studies in which some patients got antibiotics and others a placebo, show that long-term antibiotics did not cure the symptoms that people include in the diagnoses of Lyme disease.
" It's not that data isn't there. It is," he said, pointing out that 95 percent of all Lyme cases are successfully treated with only two or three weeks of standard antibiotics.
But Cameron said the double-blind studies, all with a small number of patients, only show that Lyme disease is complicated.
" The evidence is quite mixed," he said.
And the trials often look at the effect of just one type of antibiotic on patients, Donta said.
" If one doesn't work, do you say all antibiotics don't work?," he asked. "If one cancer drug stops working, do you not try and find another? There's insufficient information in the guidelines for physicians to make a decision."
Phillips of Wilton said many peer-reviewed articles published in medical and scientific journals make the case that chronic Lyme disease does exist.
What they hope the new review of the IDSA guidelines do, they said, is take all this into account and give doctors a chance to treat each case individually, rather than with a one-size-fits-all approach.
" Let the doctors have some flexibility," Cameron said."

Contact Robert Miller
bmiller@newstimes.com (bmiller@newstimes.com)
or at (203) 731-3345.

LYME DISEASE
The most common tick-borne illness in the United States.
Caused by a bacterial spirochete, Borrelia burgdorferi.
Spread to humans by the bite of the black-legged tick, aka the deer tick.
Can cause fever, headache and muscle ache in early stages.
Often, but not always, is accompanied by a rash spreading from the site of the tick bite.
In most cases is cured by a few weeks of antibiotics.
If untreated or undertreated, Lyme infection can cause arthritic pain and swelling of the knees and joints.
Number of reported U.S, cases in 2006: 19,931.
Number of cases that might actually exist could be up to 10 times the number of reported cases.
There is debate whether chronic Lyme disease -- a long-term infection that can cause fatigue, memory loss, depression, loss of vision and hearing, arthritis and heart ailments -- exists.
2007 Northwestern Connecticut Lyme disease cases Bethel -- 14
Bridgewater -- 7
Brookfield -- 11
Danbury -- 22
Kent -- 26
New Fairfield -- 17
New Milford -- 73
Newtown -- 36
Redding -- 20
Ridgefield -- 30
Roxbury -- 8
Sherman -- 7
Southbury -- 16
Washington -- 15
Source: State Department of Public Health

[orangebug]

That was the article I had seen for my initial comments. I'm not nearly as impressed with the threats of class actions suits, but the involvement of a state AG and the settlement are very important. This will have ramifications outside of Lyme disease, as "guidelines" for care are made by committees that often have potential conflict of interest.

[Appalachian Tater]

I was speaking to a physician about this. She was adamant that the only guidelines she needs to follow legally and ethically are those from her professional organizations such as specialty boards because a profession is self-regulating. Hospital guidelines, national guidelines such as InterQual and Milliman, guidelines instigated by actions of the Attorney General of Connecticut, or any initiated by non-physician scientists, these have nothing to do with her practice.

[take-a-knee]

I was speaking to a physician about this. She was adamant that the only guidelines she needs to follow legally and ethically are those from her professional organizations such as specialty boards because a profession is self-regulating. Hospital guidelines, national guidelines such as InterQual and Milliman, guidelines instigated by actions of the Attorney General of Connecticut, or any initiated by non-physician scientists, these have nothing to do with her practice.

Okay, that's comforting. I'd be willing to bet that some of her "professional organizations" recommended sterilization of certain IQ ranges and ethnic groups once upon a time. Nothing quite like a good herd instinct among our professional class.

[sofaking]

Okay, that's comforting. I'd be willing to bet that some of her "professional organizations" recommended sterilization of certain IQ ranges and ethnic groups once upon a time. Nothing quite like a good herd instinct among our professional class.
and not very long ago at that...

[Frau]

Hope this link works:

Images of elder bugs:

http://images.google.com/images?client=safari&rls=en-us&q=Elder%20bug&ie=UTF-8&oe=UTF-8&um=1&sa=N&tab=wi

Frau

They are merely annoying--get bug poop all over everything.

[sofaking]

Hope this link works:

Images of elder bugs:

http://images.google.com/images?client=safari&rls=en-us&q=Elder%20bug&ie=UTF-8&oe=UTF-8&um=1&sa=N&tab=wi

Frau

They are merely annoying--get bug poop all over everything.
so that's what those are! i had an apartment years ago that those little s.o.b's would swarm on every spring...all over the patio, screens- literally crawling out of the wood work...had to be careful where you set your drink down, they don't taste so good...

[Jan LiteShoe]

Interesting, and only a slight swerve:
Tick Encounter Resource Center.

Impressive pic of a multiple bulls-eye rash:
http://www.tickencounter.org/information/allfaqs

[orangebug]

I was speaking to a physician about this. She was adamant that the only guidelines she needs to follow legally and ethically are those from her professional organizations such as specialty boards because a profession is self-regulating. Hospital guidelines, national guidelines such as InterQual and Milliman, guidelines instigated by actions of the Attorney General of Connecticut, or any initiated by non-physician scientists, these have nothing to do with her practice.You are missing the point, and I doubt that you understood your physician friend.

Please go to any library with medical resources and get a copy of "Guidelines on (fill in the blank)" written by specialty groups. Also read the article regarding the AG's actions and the settlement.

Guidelines are often implied to be the Standard of Care, and are frequently missused by managed care companies to deny care. The introduction to the guideline publication will indicate that it is not authoritative but attempts to inform the reader of the state of the art at the time the guidelines were compiled. Virtually all medical literature is out of date (for the state of the art) by the time it is published.

When guidelines are compiled by groups, especially specialty groups, with undisclosed conflicts of interest - problems like this occur. The physician's task is complicated and the patient's life is impacted by the conflict of interest.

Recall the old Vioxx problem. Pfizer had in the PDR language that the physician was to review potential for adverse effects with the patient, yet failed to disclose those adverse effects resulting in excessive cardiac deaths. They failed to do the basic science that would have helped physicians and patients make informed judgements about how to use a potential valuable and hazardous drug. They advertised Vioxx on every media imaginable (don't think they had a blimp) and sponsored educational meetings to encourage continued prescribing - with experts telling us just how safe and how little risk was involved.

That conflict of interest has adversely affected Pfizer, their researchers and spokesmen, physicians and patients. Managed Care/Insurers had no interest other than occasionally adding a financial cost to the patient for access to the drug. While Pfizer was allowed to market this drug before the FDA pulled it, Vioxx was a standard of care for pain and arthritis.

Physicians expect honesty from researchers and expert panels formulating guidelines - especially when we have to "educate" a high school graduate managed care clerk about the medical necessity issue for a real live patient. THe NJ AG has assisted physicians in getting a more credible set of guidelines from an expert panel that will have disclosed conflicts of interest. Patients will have a better chance of obtaining valid information to make informed decisions about their care.

Guidelines are not legally binding on physicians, who recognize that advances in medicine occur independently of guidelines, and who also work within their areas of expertise and experience. Guidelines can help physicians explain decisions and recommendations. Guidelines are routinely abused by managed care companies to deny care - although their lackeys only admit to denying reimbursement for care.

Ask your physician friend how much she appreciates the guidelines compiled by managed care reps on a purportedly specialty committee.

[Appalachian Tater]

Okay, that's comforting. I'd be willing to bet that some of her "professional organizations" recommended sterilization of certain IQ ranges and ethnic groups once upon a time. Nothing quite like a good herd instinct among our professional class.


You are missing the point, and I doubt that you understood your physician friend.

Just reporting what she said, not vetting it or agreeing with it.


Ask your physician friend how much she appreciates the guidelines compiled by managed care reps on a purportedly specialty committee.

I have worked with organizations small and large on both sides of the provider/payor line as well as with many who straddle both sides of the fence and the only guidelines I have seen that were self-created were done in the hospital by interdisciplinary committees.

[orangebug]

Then your experience is lacking to criticize how guidelines should be done by professional specialty organizations.

[Appalachian Tater]

Then your experience is lacking to criticize how guidelines should be done by professional specialty organizations.Experience is not necessary to criticize. I chaired an inpatient treatment guideline committee years ago but wouldn't want to do it again--it is like herding feral cats.