By WILLIAM HATHAWAY And HILARY WALDMAN Courant Staff Writers
March 21 2007
Attorney General Richard Blumenthal has long been a prominent fixture in the impassioned debate over how best to treat Lyme disease.
But a delegation of experts say they want to know why Blumenthal keeps butting in on what they see as the wrong side of that debate - and they want him to stop.
The researchers, from Yale University and the University of Connecticut, are meeting with Blumenthal today in a bid to convince him that he has been misled by advocates who argue that treatment with long-term antibiotics can alleviate the possibly debilitating symptoms associated with the tick-borne disease.
The scientists hold the more mainstream view that the benefits of attacking Lyme with months and months of antibiotics have never been proven - and could be dangerous. They see Lyme as a bacterial infection that can be simply diagnosed and, in most cases, easily treated with a three-to-four-week course of antibiotics.
"To have good science questioned by the attorney general is very disturbing," said Durland Fish, a professor of epidemiology at Yale University.
The latest round in the battle was touched off in November when Blumenthal acknowledged that he had launched an antitrust investigation into the Infectious Diseases Society of America's development of treatment guidelines for Lyme disease.
The guidelines say in most cases a 30-day course of oral antibiotics should be sufficient to cure the disease.
Advocates on the other side of the debate argue that researchers have ignored evidence that Lyme disease can persist for years and require treatment with antibiotics for six months or longer.
Although treatment standards for most illnesses are developed by experts in the field, Blumenthal argued that the process used by the infectious disease society to develop its guidelines was anti-competitive and may have excluded valid scientific research.
Blumenthal said his investigation has uncovered "conflicts of interest that are credible and powerful."
For instance, the chairman of the infectious diseases panel that developed the guidelines, Gary P. Wormser, of the division of infectious diseases at New York Medical College in Valhalla, has received consulting fees from Baxter, a company that is developing a Lyme disease vaccine.
It is possible that Baxter might benefit from the new guidelines, Blumenthal said.
Wormser's relationship with Baxter is disclosed in a journal article outlining the guidelines, as are other potential conflicts of interest of panel members involving consulting fees, patent rights and involvement with existing businesses.
Blumenthal said he is concerned the guidelines could prompt insurance companies to deny payment for long-term antibiotic treatment - a therapy some doctors and patients insist is the only way to help people with intractable Lyme-like symptoms.
The attorney general's position on the issue has put him at odds with people like Fish, one of the authors of the infectious disease society's guidelines, and Dr. Lawrence Zemel, professor of pediatrics at the University of Connecticut and chief of the rheumatology division at the Connecticut Children's Medical Center.
They believe the indiscriminate use of antibiotics can harm patients.
They also note that some doctors make a lot of money prescribing dangerous, long-term antibiotic treatments costing $50,000 or more to desperate patients with no valid evidence that they have Lyme.
The meeting "is really to educate [Blumenthal] about what's science and what is non-science," Zemel said. "Frankly, what Mr. Blumenthal is basing this on is non-science."
Blumenthal counters that he is not questioning the guidelines or advocating any medical position. He said he is only investigating whether the researchers who drafted the guidelines excluded scientific evidence that might support long-term antibiotic use to treat Lyme.
"I am not qualified to make scientific judgments," Blumenthal said. "I am only interested in the process."
But Fish and Zemel say that, for nearly a decade, Blumenthal has encouraged the perception that he favors the "long-term Lyme" camp by appearing at charity fundraising events or rallies organized by advocates who believe Lyme disease often becomes a chronic disease.
Blumenthal "is a hero to the Lyme community," said Diane Blanchard, co-president of Greenwich-based Time for Lyme. "You cannot continue to ignore an entire population of sick people. What are you going to do? Leave patients suffering?"
In 2005, Blumenthal presented an award to New Haven Dr. Charles Ray Jones, who later became the subject of a state disciplinary hearing for allegedly prescribing antibiotics to a child in Nevada without seeing the patient.
Jones has received an outpouring of national support from Lyme disease groups because of his willingness to treat patients suspected of having chronic Lyme with long-term antibiotics.
"Is there a perception that I am advocating a position? Yes," Blumenthal acknowledged. But he insisted the perception is incorrect.
Although Blumenthal says he has taken no position on Jones' disciplinary battle, national publicity about the hearing and his own antitrust investigation have fanned the flames. The Lyme debate has been raging almost since the very first tick-borne spirochete was identified in1983 as the culprit in a rash of arthritis cases in Lyme, Conn., in the 1970s.
There is broad agreement on this much: Most infections of Borrelia burgdorfi, the bacterium that causes Lyme, can be easily cleared up with relatively short courses of antibiotics if treated early after infection.
But after that, common ground is difficult to find.
The long-term Lyme camp believes that the infection can survive early antibiotic treatments and at low, sometimes undetectable levels, cause a host of persistent and debilitating symptoms collectively known as chronic Lyme - fatigue, muscle palsy, arthritis and neurological and cognitive deficits.
Doctors and advocates on that side of the debate argue that standard diagnostic tests often miss the presence of Lyme, leaving it woefully under-diagnosed. Affected patients, they say, needlessly suffer for years although long-term courses of antibiotics would cure them.
They point to studies that suggest bacteria can persist after treatment, and that additional courses of antibiotics can help and should be covered by insurance companies.
But a majority of doctors say there is a clear lack of evidence to support those positions.
They say most patients who have been treated for Lyme and remain ill probably have other treatable diseases such as depression, multiple sclerosis, rheumatoid arthritis or Parkinson's.
Zemel says patients with no evidence of Lyme infection can suffer on two fronts from long-term antibiotic use.
They may develop antibiotic resistance, and their doctors may overlook the real cause of their illness.
Contact William Hathaway at [email protected] Copyright 2007, Hartford Courant
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Indiscriminate use of antibiotics???!!!!
That is almost funny, except it borders on criminal.
I wonder what the "No evidence of Lyme" means.
Does that mean no positive WB? No symptoms?
Idiots, one and all!!!
We know the truth about Lyme. We suffer with it every day and maybe off and on for the rest of our lives.
It makes me so mad!!!!
You would think the powers that be would want as many of us working, paying taxes and being functional, participating members of society.
You can't educate someone with blinders on. They only see what they want to see.
Why are we soooo threatening to these people?
It is my life and I will be dam$#@ if I would let these jerks keep me from getting better.
Wait and see. I believe that Lyme is going to be endemic throughout the country in the next 5 years.
Doesn't this remind you of the stand on AIDs/HIV.
When it was just one segment of the population it was an easy disease to dismiss.
As time goes by, the numbers of people applying for and getting disability will be growing due to gross negligence in dx and treating this disease.
Maybe that will get someone's attention.
I hope the Attorney General gives them "hell".
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Notice how they never address what happens if all other possibilities are ruled out? The "their doctors may overlook the real cause of their illness" card is thrown every time.
What about the "Scientific" reality that that chronic Lyme exists and they have no other more efficacious treatment modality than lt abx & antimalarials?
The word science is such a smokescreen. Like our camp's MD's research isn't scientific?
Yet another reason why the Columbia center is so cruicial.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I used to think that the smartest people went into science, and that medical professionals actually cared about sick people. This is clearly not the case. I see now that medicine is no more exempt from liars and fakers and imposters than any other field. And these liars believe they are above the law, that no one else has any right to have a view on the subject. Medical fascism is what this is. I wish other states' attorney generals would join in this action.
Posts: 8430 | From Not available | Registered: Oct 2000
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
If we dont have lyme then what do we all have.
Ive been to close to 50 drs now, i cant take abx so i am looking at other things, NO dr has come up with anything. They look at me like im nutz when i explain how everything happend and my symptoms....then they zone out.
Lyme often causes a cascade of events in the body, they should be looking to see how they can fix those events if its not abx!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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In the past Dr. Zemel filed charges against another doctor for "over-treating" Lyme and "profiteering" - charges entirely based on a RUMOR, by his own admission. That doctor was vindicated... and will no longer treat Lyme.
Fish and Zemel are right about one thing: one side in this debate is science-based, the other is all rumor, politics and innuendo. They just have the sides confused, that's all.
I really hope Blumenthal asks Dr. Zemel why he once filed charges against a Lyme doctor purely based on hearsay.Posts: 621 | From US | Registered: Jun 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by lou: I used to think that the smartest people went into science, and that medical professionals actually cared about sick people. This is clearly not the case. I see now that medicine is no more exempt from liars and fakers and imposters than any other field. And these liars believe they are above the law, that no one else has any right to have a view on the subject. Medical fascism is what this is. I wish other states' attorney generals would join in this action.
Me too Lou me too!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
fish and friends are going to 'educate' blumenthol.
what are they planning to do, bring a couple of baseball bats? ...cuz they got no research base to speak of with which to educate anyone on lyme - which is why the guidelines are being investigated in the first place.
i hope blumenthol stands as strong as ever and gets more evidence from these meetings.
....i will say, it looks like things are getting to the old boys afterall.
mo Posts: 8337 | From the other shore | Registered: Jul 2002
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My husband just wrote a letter to that paper regarding that article. Not that that will change anything, but this is getting to be insane.
Thanks for posting, Nan.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I wrote this reporter WIlliam Hathaway about my experience and he wrote back nicely!!! Nice letters if you want to!!! He listens/reads!!!!
I hope Blumenthal talks some sense into THEM!!! I don't think they could brainwash him- he is a man of great integrity. And he has seen with his own eyes people sick and recovered- but the idea that they are doing this is- SCARY! Because I want him to win on our behalf- and I bet they will be lawyered up and fierce!!!!!!!!!!
I always thought better of Fish until recently- oh well-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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quote: I always thought better of Fish until recently-
Wasn't it Fish who conspired with McSweegan to send the LDF's journal a bogus article? (to discredit them)
Karen Forschner testified to this and other slimy tactics from Fish at a 1999 state hearing: (starting at bottom of p. 89 of pdf file, note Durland Fish is misspelled "Derlin" throughout.) http://www.ctlymedisease.org/pdf/ctldhearing19990402.pdf
These guys don't play nice.
Posts: 621 | From US | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes I know- but someone told me that he had changed at some point and had become sympathetic because his grad student assistant got Lyme- clearly NOT the case!~~ Too bad.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Thanks for the link. I just skimmed it, but what little I have read is enough to make me sick.
How can they (and the other ducks) have gotten away with this for so long? It truly is criminal.
Posts: 115 | From USA | Registered: May 2006
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posted
This attitude would be laughable it is so ludicrous except for the fact that it is real.
Briefly here is a summary of hubby's most recent runin with an I.D. doc in Pittsburgh in Februrary, 2007. Refused to order any tickborne testing or any testing of any kind!!! -- you have been treated blah blah blah.
Just got a copy of the office notes -- states that it is unclear if the patient ever had Lyme and Babesia etc and also unclear as to whether patient benefited from antibiotics. Goes on to say that a prion disease (i.e "Mad Cow Disease") might explain patient's symptoms except that patient did not have dementia as would be expected with that illness.
There are so many falsehoods in the office notes I am considering just writing a rebuttal letter rather than making them correct all the errors.
It is ridiculous to have to spend time explaining to an I.D. doc such simple things as "the test you have a copy of is a PCR test -- it has nothing to do with antibodies ..."
What ever happened to Fallon's research? Anyone have any idea if it is ever going to be published?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Blumenthal said his investigation has uncovered "conflicts of interest that are credible and powerful."
Awesome!! I'm so glad he's hung in there.
I'd like to know how 22+ scientific studies documenting the persistence of the lyme bacteria despite repeated antibiotic treatment can be breezily dismissed by the IDSA with the pathetic excuse, 'these must have all been due to cross-contamination in the lab.'
Give us a freakin' BREAK!!!!
Those studies conclusively prove what chronic lyme patients have been saying all along. Yet the IDSA pretends they don't even exist. This is ludicrous.
Pointedly ignoring the existence of an entire body of peer-reviewed scientific evidence is what has damned the IDSA and revealed their real motives.
I am very, very proud of Blumenthal and impressed!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
more letter writing to do on this one; pick it apart! thoroughly disgusting!
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bettyg
Unregistered
posted
here's an email i started in the wee morning hours and just finished now, so will put this here vs. trying to find where it's supposed to go! **********************************************
Gov. Rell and AG Blumenthal,
It saddens me so much to see these conn. health dept. hearings CONTINUE for Dr. Charles Jones, age 78, and beginning their 2nd year of hearings!
Since I live in IOWA, I can't make any of the hearings since they postpone and reschedule with no advance notice. My chronic lyme heart/soul goes out to Dr. Jones and his defense team trying to FINALIZE THESE WITCH HUNT HEARINGS! {:
It's amazing to me that the public citizens of Conn. are paying ALL the costs for these health dept. hearings, and Dr. Jones medical malpractice insurance will NOT pay anything towards them.
It's strictly OUT OF POCKET for him as our lyme literate treatments are for almost ALL of us!
I understand MORE charges have been ADDED to his previous charges! When will this stop?
I understand the father SEPARATED from the RN wife didn't want to come out to testify as it was going to come out of father's pocket; not Conn. HD!
Dr. Jones is 1 of 9 LLMD, lyme literate MDs for KIDS nationwide! We need him; the kids need him; and Conn. needs this very compassionate LLMD who has given his life for many years to CHRONIC LYME CHILDREN.
I just read on lymenet.org where Richard is meeting w/several IDSA mds today.
"The long-term Lyme camp believes that the infection can survive early antibiotic treatments and at low, sometimes undetectable levels, cause a host of persistent and debilitating symptoms collectively known as chronic Lyme - fatigue, muscle palsy, arthritis and neurological and cognitive deficits.
Doctors and advocates on that side of the debate argue that standard diagnostic tests often miss the presence of Lyme, leaving it woefully under-diagnosed. Affected patients, they say, needlessly suffer for years although long-term courses of antibiotics would cure them.
They point to studies that suggest bacteria can persist after treatment, and that additional courses of antibiotics can help and should be covered by insurance companies.
But a majority of doctors say there is a clear lack of evidence to support those positions.
They say most patients who have been treated for Lyme and remain ill probably have other treatable diseases such as depression, multiple sclerosis, rheumatoid arthritis or Parkinson's.
Zemel says patients with no evidence of Lyme infection can suffer on two fronts from long-term antibiotic use.
They may develop antibiotic resistance, and their doctors may overlook the real cause of their illness.
Contact William Hathaway at [email protected] Copyright 2007, Hartford Courant"
I have to take exception to this statement, "They say most patients who have been treated for Lyme and remain ill probably have OTHER ""treatable"" diseases such as depression, multiple sclerosis, rheumatoid arthritis or Parkinson's."
That's a cop out! I've developed many other symptoms/diagnosis from my long-term CHRONIC LYME disease misdiagnosed by 40-50 mds/specialists over 37 years!
BOTTOM LINE: we need the brilliant minds of ILADS and IDSA WORKING TOGETHER FOR ONE CAUSE!
We, lyme patients are the ones suffering due to the many injustices that have gone on forever! Why should we have to fight daily for our health insurance companies to cover our LLMD appts., blood tests, body lab tests, and RX meds and PRESCRIBED supplements!
I've been fighting for 11 months to get reimbursed for $4300 out of pocket lyme dr. expenses for going to an out of state LLMD since IOWA HAS NO CHRONIC LYME LITERATE MDS IN ENTIRE STATE! Wrong, wrong, wrong!
Thank you both for your time; we need to keep good LLMDs like Dr. Charles Ray Jones, Conn., and Dr. Joe Jemsek, NC.
We lost a good treating LLMD Dr. Burrascano last fall of treating lyme patients, but he's now doing research! Please get him involved in this; he knows first-hand about bogus health dept. charges, and the huge $$$ for defense fund coming out of his/our lyme patients pockets to defend him/other llmds!
BettyG - Iowa lyme activist since 2004!
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posted
You all have been a tonic for me this morning! Have been having POTS again after several years without it...and it is so very upsetting.
Mo...your line "What are they going to do? Bring a couple of baseball bats?"
Lou...your "medical fascism"...gotta remember that one!
I love all of you for your outrage...it matches mine!
Betty....Get some sleep! After you send that letter!
Cave...Way to go Blumenthal! Hope he isn't reading here...let's hope his meeting with these know-it-all dodo birds will furnish him with more ammunition!
Know what I think? They are sweating this out!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
They are ****ed they have to hire attorneys to defend their position.
Now all they need is a good dose of Lyme and company.
Posts: 4258 | From over there | Registered: Jul 2001
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quote:I always thought better of Fish until recently- oh well-
quote: Yes I know- but someone told me that he had changed at some point and had become sympathetic because his grad student assistant got Lyme- clearly NOT the case!~~ Too bad.
Durland Fish's grad student with Lyme mysteriously drowned in the Caribbean a few years ago. Durland Fish was there and said he did his best to save him, but alas, due to his tragic and untimely death this student's doctoral thesis on Lyme never got published.
Make of all that what you will.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
Blumenthal said his investigation has uncovered "conflicts of interest that are credible and powerful."
For instance, the chairman of the infectious diseases panel that developed the guidelines, Gary P. Wormser, of the division of infectious diseases at New York Medical College in Valhalla, has received consulting fees from Baxter, a company that is developing a Lyme disease vaccine.
It is possible that Baxter might benefit from the new guidelines, Blumenthal said.
I think this says it all.$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Durland Fish's grad student with Lyme mysteriously drowned in the Caribbean a few years ago. Durland Fish was there and said he did his best to save him, but alas, due to his tragic and untimely death this student's doctoral thesis on Lyme never got published.
I didn't realize it was a guy with lyme that had drowned. Actually, several of Fish's students have gotten lyme from their field work. At one point, he said that precautions didn't actually work very well to prevent lyme, since his students used them all and several still got lyme. Apparently it is possible for Fish to learn one thing about lyme. Too bad that seems to be his limit.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The article says it all.
"But a delegation of experts say they want to know why Blumenthal keeps butting in on what they see as the wrong side of that debate - and they want him to stop."
posted
I don't care whether the journalist Hathaway is nice or not. he did not give a fair shake on this debate at all. How biased is this sentence:
"Jones has received an outpouring of national support from Lyme disease groups because of his willingness to treat patients suspected of having Lyme disease with long-term antibiotics"
In essence, what Hathaway is saying here is that Jones diangosis of lyme disease is based on suspicions, not tests and proper diagnosis, AND THAT lYME DISEASE ADVOCATES ONLY SUPPORT HIM BECAUSE HE GIVES THEM LOTS OF ANTIBIOTICS!!! How outragious and insulting and erroneous is that??????
You know, aren't there any logical, non-lyme public minds are there who actually step back from this debate and ask:" Gee, I wonder why these patients are fighting so hard for antibiotics? Why would anyone in their right mind WANT to take antibiotics long term just for the heck of it?? I would think to myself "'wow, these patients must have huge benefits from these antibiotics, because when I got that case of strep throat last year, it sure was miserable to take Cipro"
I'm SO ANGRY, SO DISGUSTED, and wORKING on a letter to the Courant editor...
Posts: 364 | From California | Registered: Sep 2005
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posted
[/QUOTE]Durland Fish's grad student with Lyme mysteriously drowned in the Caribbean a few years ago. Durland Fish was there and said he did his best to save him, but alas, due to his tragic and untimely death this student's doctoral thesis on Lyme never got published.
this should be looked into.
can someone send this to attorney blumenthal?
Posts: 33 | From newenglandusa | Registered: Feb 2007
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