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» LymeNet Flash » Questions and Discussion » Activism » Dr. Jemsek

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Author Topic: Dr. Jemsek
AP
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I see a ton of solicitations for support for Dr. Jones, but what about Dr. Jemsek??? He's still caught up in a web of bureaucratic B.S.

Have you all just given up hope?

--------------------
Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�

Myspace: http://tinyurl.com/5p64ed

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AP
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If he loses, we all lose.

He got a stay on his license, and is able to practice within the guidelines set by the NC Medical Board.

He is a fee for service provider now, and presently involved in a legal battle with BC/BS of NC.

When I spoke with him at my appt. last month, he said that he'd be appealing the board's decision.

--------------------
Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�

Myspace: http://tinyurl.com/5p64ed

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ConnieMc
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I have wondered the same thing ...

There is an excellent article in a small Charlotte newspaper covering the entire status of all of this. The article is not online and all I have is a copy of it, so do not think I can post it. But will try to determine how to do it.

But summary is:

The families of 2 very ill teens are appealing the medical board decision. One of the teens is going blind due to Lyme and the other is very ill. Both were doing very well until treatment was stopped per the medical board rulings.

Dr. Jemsek is in personal and business bankruptcy and is losing everything to this fight.

They are only fee for service now as all insurance companies have thrown him out of their networks.

BCBS is suing Dr. Jemsek for fraud claiming he owes them for all treatment he provided from 2001 to 2006 saying none of it was necessary. He is counter-suing them for breach of contract and other things.

He is selling his home to pay attorney fees.

The AIDS practice has now split off into another practice. The other doctors he had brought into his clinic were forced to split that side of the practice from him to save the practice. But to add insult to injury, BCBS refused to allow the new practice into their network. Although Dr. Jemsek has nothing to do with the new practice, they say the new practice "does not meet their business model". Therefore, thousands of AIDS patients are having to pay out of pocket or change doctors.

There is much much more going on but those are the dirty highlights.

Dr. Jemsek is risking everything for his Lyme patients and he will not back down. He knows he is right and so do we. But he may lose everything fighting for US. He has lost his reputation and his good name here in the state of NC. He is a hero and is risking everything for us.

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AP
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Do you know what we can do connie??? He is such a great man.

--------------------
Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�

Myspace: http://tinyurl.com/5p64ed

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bettyg
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are you NC lyme patients and others who go to him continuing to write the newspapers in that area?

HAVE YOU WRITTEN CONN. GOV. about your situation since AG Blumenthalwill be making some type of decision in future?

julie -- mass has a post in general about letter she sent and gov/health dept ?? reply to her. read it if you haven't ladies.

also, if you post a mailing address for jemsek, i'm sure there are many who would write a supportive letter to your dr. j! just my thoughts. [Wink]


updated 2-21-07, when you see connie mc's post on JEMSEK NEWSPAPER ARTICLES in wierd format, please NOTE :


i reformatted all she posted there since it was in unreadable for me/other neuro lymies! so just hitting the down page until you come to my version of her post ok!

i asked connie to note my reformatted version at top of her post, but she chose NOT to. [Frown] [tsk] I don't want you to get the eyestrain her post caused my eyes. [Roll Eyes]

[ 21. February 2007, 12:51 AM: Message edited by: bettyg ]

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sizzled
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What can we do?

Can you provide us with addresses (sorry if I am repeating here)?

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AP
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quote:
Originally posted by sizzled:
What can we do?

Can you provide us with addresses (sorry if I am repeating here)?

I don't have that info... He'd given me an email contact for someone he thought would, but I've emailed her a few times and not gotten anything back.

Hopefully someone here can provide that for us.

--------------------
Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�

Myspace: http://tinyurl.com/5p64ed

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ConnieMc
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quote:
Originally posted by AP:
quote:
Originally posted by sizzled:
What can we do?

Can you provide us with addresses (sorry if I am repeating here)?

I don't have that info... He'd given me an email contact for someone he thought would, but I've emailed her a few times and not gotten anything back.

Hopefully someone here can provide that for us.

I am working on this.....
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pmerv
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NC patients should band together, meet with their legislators, talk with any influential people they know, call in political debts, raise money, sue, complain, protest, get decent people on the medical board, whatever they can. What's happened to Dr. J is tragic. And they may not have finished with him, either. They can still yank his license.

I set up a NorthCarolinaLyme yahoo group for NC patients. There are 19 people on it so far.

--------------------
Phyllis Mervine
LymeDisease.org

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IMHisda
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Which addresses specifically do you need?

I'm sure Dr. J would appreciate our prayers and support.

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RV

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IMHisda
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I contacted DREDF http://dredf.org/since lymies are really the ones suffering from the insurance companies' greed and they wanted me to write a sequential letter of how these doctors have been harrassed for trying to help us and how it is adversely affecting us as people with disabilities. I have been sort of out of it since then and wondering if anyone could help me with this

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RV

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bettyg
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rb, go to general and read JULIE - MASS's post; towards bottom is the letter she wrote about dr. jones and could be applied to jemsek as well. it will give you great ideas to use in your letter making a difference ok! good luck. [group hug] [kiss]
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IMHisda
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Thank you Betty G!! [Big Grin]

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RV

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CaliforniaLyme
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Great article- thanks for posting!!!!

Should post in Gen SupP*!)!!!!!!!!!!!!!!!!

--------------------
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

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Lymetoo
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Wow...I hope these parents can get their children to another dr ASAP!!

It is SUCH A CRIME!! what they are doing to Dr J!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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AP
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I just want to know what I can do, as an out of state patient, who has reached the limited amount of treatment Dr. J can give me this year, but was so close to being healthy...

I can't just start over with another doctor. I wanted the best, and I had it. He gave me my life back, and the medical board has taken it away.

--------------------
Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�

Myspace: http://tinyurl.com/5p64ed

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pmerv
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I still think you could and should complain to the medical board. Be factual and don't whine.

--------------------
Phyllis Mervine
LymeDisease.org

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bettyg
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reformatting; can't read as is...

quote:
Originally posted by ConnieMc:

Medical Board Blocking Care

Rhino FROM STAFF AND WIRE REPORTS Rumors
The Rhinoceros Times

Vol. VI No. 6 � Copyright 2007
The Rhinoceros Times
Charlotte, North Carolina
Thursday, February 8, 2007


Fifteen-year-old Kalyn Faggart can feel her world growing dark. It starts with a throbbing pain near the back of her head, the pressure from fluid accumulating in her cranial cavity building and pressing against her sensitive optic nerve with a blinding intensity.

Kalyn's world goes dark one slow frame at a time, the result of a debilitating disease that attacks the central nervous system. Her field of vision narrows as the swelling around her brain becomes more severe, progressively stealing her sight by the hour, day and week.

Kalyn's mother, Denise Faggart, knows that time is precious and that it is running out. ``If left untreated, Kalyn's ophthalmologist says she'll go
blind,'' Denise Faggart said flatly of her daughter's deteriorating condition. `` Right now, we're looking at about a four-week window and it's terrifying.''


Denise Faggart has been in a race against the clock for nearly a month now, petitioning the N.C.
Medical Board to allow her daughter to continue receiving medical care from Dr. Joseph Jemsek, a
Charlotte-area infectious disease specialist who is at the center of a national controversy over Lyme disease that nearly cost him his medical license and, advocates contend, has left hundreds of his patients in dire straits.


Patients like Kalyn Faggart. Three years ago, Kalyn was sideswiped by a mysterious onslaught of ailments - chronic joint pain, crippling headaches, an alarming loss of cognitive abilities
and a measured loss of vision.


She had gone from a straight-A student who loved hiking and playing the piano, Denise Faggart said, to a girl who was stumped by simple math problems and was often left bedridden for days.
After months of doctor visits and batteries of exams, Kalyn's pediatric neurologist, Dr. Robert Nahouraii of Mecklenburg Neurological Associates in Charlotte, suggested she get tested for Lyme disease.


The Faggarts went to see Jemsek, who had drawn national acclaim during the late 1980s for his pioneering work in the field of HIV/AIDS. Six years ago, Jemsek began expanding his medical practice to include the treatment of Lyme.

By the time Kalyn was referred to him in
2004, Jemsek had gained a reputation as one
of the forerunners of so-called Lyme literate
doctors, with patients from across the country
seeking him out for treatment.


``We had the best neurologist; we had the best ophthalmologist and we wanted the best infectious disease specialist,'' Denise Faggart said.

Kalyn tested positive for Lyme and, under Jemsek's care with consultation from Nahouraii and Kalyn's pediatric ophthalmologist, Dr. Sandra Brown of Cabarrus Eye Center, she began a regimen of oral antibiotics.

After more than a year, Kalyn showed only limited progress and her doctors decided to pursue a more rigorous intravenous treatment.

``It wasn't an easy decision to make, but verybody had come to the conclusion it was what would work best,'' Denise Faggart said. Everybody, it seemed, had been right. Over the course of the ensuing months, Denise Faggart said, the IV treatments
worked wonders.

``Kalyn was Kalyn again,'' she said. ``I know it sounds melodramatic, but it was a miracle.''
The miracle turned into a nightmare last summer, she said, when the N.C. Medical Board suspended Jemsek's license to practice medicine for one year.

The board ruled that Jemsek's treatment of Lyme disease using long-term courses of antibiotics fell outside the prevailing standard of care, even though the guidelines on which the standards were based - which advocate antibiotic treatments of no longer than 28 days - are stated to be optional.


The accepted guidelines, which were written by the Infectious Diseases Society of America, state that there is no proven evidence that the bacteria that causes Lyme persists past the first few weeks of treatment.

Additionally, while consent for treatment was obtained from every patient Jemsek treated, the board ruled that Jemsek failed to adequately inform patients that his treatment significantly differed from the accepted norm.

The board immediately ``stayed,'' or lifted, the suspension, allowing Jemsek to continue practicing medicine but with a number of restrictions for a period of one year. One of the restrictions was a prohibition from administering antibiotics for more than 60 consecutive days to treat Lyme patients.

Last September, Kalyn's cycle of IV antibiotics hit the 60-day mark. When the treatment was stopped, Denise Faggart said, Kalyn's symptoms returned with a vengeance.

Mass doses of diuretics to relieve the fluid swelling in her cranial cavity proved futile, as did a combination treatment of other medication. Last month, Kalyn underwent multiple lumbar punctures - painful procedures where a needle is inserted into the spinal cord to drain excess fluid - all without success.

``It's not that we haven't tried every route possible,'' Denise Faggart said. ``It's that nothing else has worked.''

Kalyn was put on restrictive bed rest following the failed lumbar punctures; her eyesight gradually diminishing as the pressure on her optic nerve increases and her mother continues to petition the N.C. Medical Board for a waiver of the 60-day treatment restriction placed on Jemsek.

Nahouraii and Brown have also both encouraged the Medical Board to allow her treatment under Jemsek to continue.

Last week, Denise Faggart learned that the Medical Board's director and its attorney had initially indicated they want the Faggarts to explore options of seeking treatment from other physicians in North Carolina, or traveling to the northeastern US for care, before considering her request for a waiver to the restrictions placed on Jemsek.

Denise Faggart was devastated. ``It's insanity,'' she said. ``We're begging our own state's Medical Board to allow Kalyn to get healthy. We've already searched for other doctors in and out of North Carolina, and they either deny chronic Lyme disease exists or refuse to help.

``I don't think the Medical Board set out
to harm children when they took their action
against Dr. Jemsek,'' Denise Faggart said.
``But they are. They're harming my child.''

And she's not alone. The parents of
another of Jemsek's Lyme patients - 15-yearold
David Jacks - are also petitioning the
Medical Board to allow Jemsek to continue
administrating IV antibiotics to their son.

David's two other treating physicians have also written the Medical Board, encouraging the board to allow Jemsek to continue treating David.

``It's been incredibly frustrating,'' said
David's mother, Katie Jacks. ``David's in a
tremendous amount of pain and the longer this drags out, the worse it gets.''

David's medical history is remarkably similar to Kalyn's: Nearly three years ago, he went to bed one night feeling fine and woke up the next morning with chills, a fever and severe body aches.

``We thought it was a bad cold,'' Katie Jacks said, ``but it kept getting worse and it didn't stop.''

The Jacks sought treatment from a variety of doctors and David underwent myriad tests, until a psychologist recognized his symptoms as possibly being Lyme-related and recommended Jemsek.

David, similar to Kalyn Faggart, was started on a regimen of oral antibiotics but failed to respond. After nearly a year, the Jacks opted for a more aggressive IV treatment.

The first few weeks, Katie Jacks said, were horrifying. The potent antibiotics were actually making her son physically sicker.

``It's almost like chemotherapy,'' Katie Jacks said. ``The treatment is difficult; it makes you sick while it's making you better.''

After the initial sickness that accompanied the first IV cycle passed, David showed remarkable progress. But, like Kalyn, he became progressively worse as he was weaned off the IV. When the treatments resumed, so did his health.

``It's like night and day,'' Katie Jacks said. In that respect, it's been a long and dark night since David's IV treatments were halted by the Medical Board's 60-day restriction, Katie Jacks said. Her son has been receiving oral antibiotics from another doctor, but the doses are either too low to prove effective, or too strong for David to keep down.

Over the last six weeks, Katie Jacks said, her son has lost about 10 pounds, the result of a severe digestive disorder; he runs a constant
fever, while recurring migraines and swollen
joints bring him at times near tears.


His eyes, while not immediately in danger of losing sight like Kalyn's, are incredibly sensitive to light. He can't venture outside, even on cloudy days, without wearing two pairs of thickly tinted sunglasses.

``He says it's like living in a constant blur
of pain,'' Katie Jacks said. When Katie Jacks learned last week that the Medical Board was expressing reservations about granting a waiver for Jemsek to continue treating her son, she was
crushed.

``We're at the end of our rope,'' she said. ``We've looked for other doctors, but nobody will deal with it here because they're terrified by what happened to Dr. Jemsek.

``All we want is for our son to be able to be home and get well,'' Katie Jacks said. ``Dr. Jemsek did that for us. He gave us back our son's life.''
Other former patients, however, say that Jemsek destroyed theirs, that he's a reckless maverick more concerned with making a fast buck than with delivering quality medical care.

The N.C. Medical Board brought charges against Jemsek based on his treatment of 10 patients. During a two-day hearing last June in Raleigh, the Medical Board's attorneys - who act as prosecutors for cases brought before the 12-member board - argued that Jemsek's treatment violated accepted standards of care, and did more harm than good.


While more than 200 of Jemsek's patients turned out at the hearing to provide support, and hundreds more had sent letters offering the same, several former patients testified before the Medical Board that Jemsek had used them as a ``guinea pig,'' pumping them full of expensive antibiotics for months, sometimes years at a stretch, even if they had not been tested or had not tested positive for Lyme disease.

Heather Jenkins, who went to Jemsek in April 2002 with chronic fatigue and flulike symptoms, told the Medical Board that Care Jemsek kept her on daily IV antibiotics for nearly a year-and-a-half, during which time she developed multiple infections around the IV port in her arm.

The last infection, she said, put her in a hospital intensive-care unit for five days.
``He almost killed me,'' Jenkins said of Jemsek.
A blood test showed that she did not have Lyme, although lab testing often proves unreliable in detecting the bacteria that causes the disease.

Joseph Jabkiewicz testified that his wife, Kathy, died after receiving treatment from Jemsek. Jabkiewicz said that Jemsek misdiagnosed his wife with chronic Lyme disease and subjected her to two years of needless antibiotic treatments, despite numerous lab tests that did not present
positive for Lyme.

Over the course of her treatments, Jabkiewicz told the Medical Board, his wife became increasingly ill and was hospitalized numerous times.

Jabkiewicz is currently suing Jemsek in civil court. According to the lawsuit, Kathy Jabkiewicz obtained a prescription for morphine from Jemsek to help ease her pain and died after one dose.

Jenkins is also pursuing a lawsuit against Jemsek.
Through his attorney, Jim Cooney of Womble Carlyle Sandridge & Rice, PLLC,

Jemsek issued the following statement:

``While applicable federal and state law prohibits us from discussing the specifics of any patient care, I can assure you that there is another side to the story.''

Jemsek told the Medical Board that his treatment of Lyme patients has evolved with time and that most patients now receive breaks between active, long-term therapy.

He said that only the sickest 20 percent of his hundreds of Lyme patients receive IV treatment, and that he has changed some of the language in the consent forms patients sign to emphasize that such treatment differs from the accepted norm.

Ironically, five of the patients who the Medical Board built its case against Jemsek around are still his patients and had written letters in support of Jemsek.

One patient, James Bowes, told the Medical Board that Jemsek had explained the risks of long-term treatment and that those treatments had helped him regain his health.

And in a Charlotte Observer article, one Medical Board member, Dr. Art McCulloch, conceded that long-term antibiotic treatment like Jemsek provides might one day be the norm.

The article, which was published after the board had disciplined Jemsek, reads, ``McCulloch, the Charlotte anesthesiologist, said Jemsek's approach could become the standard in five years, but for now patients need to know `his practice is out of the ordinary.'''

Dr. Beth Jordan, president of the North Carolina Lyme Disease Foundation in Raleigh, said she empathizes with the patients who testified against Jemsek, but maintains they represent only a small handful of the ones he treats, including
herself.

Jordan received successful treatment from Jemsek for chronic Lyme disease, she said, after being shuffled for years from doctor to doctor.

``He helped me get my life back,'' Jordan said. ``By the time most of his patients get to him, they've suffered and been desperately ill for years, seen countless specialists and many of them had nearly given up hope for help.

``I'm glad the Medical Board allowed Jemsek to continue practicing,'' Jordan said. ``I think they recognized he's serving the community in a good way.''

Katie Jacks agreed, but worries about the fate of her son resting in the hands of the Medical Board.
``I feel that in many ways Dr. Jemsek has gone well beyond the call of duty and literally sacrificed his reputation in the eyes of many to help very ill people like my son,'' Katie Jacks said.

``I credit Dr. Jemsek with saving my son's life,'' she said. ``But will he be allowed to continue?''


Battle Lines Drawn In Bitter Lyme Wars
BY M.E. PELLIN
EDITOR

Kalyn Faggart and David Jacks, profiled in this week's Rhinoceros Times, have become front-line casualties in what has come to be known nationally as the Lyme Wars.

To a varying degree, so has their doctor, Joseph Jemsek. Last summer, the N.C. Medical Board
disciplined Jemsek for his treatment of Lyme
disease, which included long-term courses of
antibiotics contrary to prevailing guidelines
of care.

Additionally, while all of Jemsek's patients consented to treatment, the board ruled that he failed to adequately inform them that his treatment differed from the norm.

The board allowed Jemsek to continue practicing medicine, but with a number of restrictions for a period of one year. Whether he'll be able to continue doing Lyme disease is a bacterial infection caused by a corkscrewed-shaped
bacterium called a spirochete, which is spread by the bite of infected deerticks.

Once the spirochete enters the bloodstream after a tick bite, it spreads through the body and can
cause a wide range of musculoskeletal and neurological symptoms;

some of the more common include persistent
headaches, fever, fatigue, muscle and joint pain and a reddish, bull's-eye skin rash, although not all patients develop the rash.


Lyme disease is named after the town - Lyme, Connecticut - where it was first diagnosed in the United States in 1976.

Lyme disease has been reported in 48 states, including North Carolina. so, at least in North Carolina, is uncertain: In January 2006, Jemsek said, Blue Cross and Blue Shield of North Carolina (BCBSNC) began denying claims on a majority of his Lyme treatments, just as his practice was moving into a new $8 million medical clinic he had built in Huntersville.

Last September, BCBSNC filed a lawsuit against Jemsek, alleging that he fraudulently and deceptively misrepresented the services and treatments he provided and failed to sufficiently disclose the nature of those services and treatments.

BCBSNC alleges that Jemsek owes the insurance company $14 million, and is suing him for up to $100 million.

Jemsek, through his attorney, Michael F.
Ruggio of the Washington, D.C.-based office
of Polsinelli Shalton Flannigan Suelthaus
LLP, denied the complaints.

``I have a real problem with what the Blues are doing here,'' Ruggio said. ``There's no basis for what they did. It had to be something driving this other than his treatment of patients and that he didn't disclose stuff, because he did disclose stuff.''

Ruggio said that from 2000 through 2006, BCBSNC paid for the treatment Jemsek provided, while being given full access and conducting audits of his patient files, with no complaints.

Jemsek has filed a counter lawsuit against
BCBSNC, Ruggio said, alleging that the insurance titan is in breach of contract, has failed to pay for services rendered and has engaged in unfair and deceptive trade practices.

In the wake of the Medical Board's ruling and BCBSNC's lawsuit, Jemsek has filed for personal and professional bankruptcy. He said he's currently in the process of selling the Charlotte home he built 20 years ago to pay attorney fees.

Jemsek's clinic owes more than $2 million to its top 20 creditors, according to court documents, and this week was served notice of foreclosure. The clinic, he said, has already had to layoff 45 employees.

Jemsek's HIV/AIDS practice, which he built over 23 years, has been forced to go to a fee-based system for patients because insurance carriers will no longer cover his treatment, effectively shutting down the state's largest, private HIV/AIDS facility.

Jemsek, who in the early 1980s diagnosed the
first case of AIDS in Mecklenburg County, said that his 1,000 HIV patients have had to find care elsewhere, many with limited success.

Before the Medical Board and BCBSNC storm hit, Jemsek said, his clinic had been providing care for about 200 new HIV/AIDS patients a year.

Jemsek has twice been recognized by the state for his HIV/AIDS work, receiving the Certificate of
Appreciation and World AIDS Day Volunteer Service awards from govenors Jim Hunt and Mike Easley.

Jemsek currently treats about 1,200 Lyme patients. But like his HIV/AIDS patients, many have been forced to look elsewhere for
treatment because BCBSNC, along with other
insurance carriers, no longer covers his.

``It's been difficult for my patients, who are very worried about their future medical
care, '' Jemsek said. ``We draw tremendous
strength from the support they've given us and continue to provide us on a daily basis.

``We believe that we've restored health to
thousands,'' Jemsek said. ``We're not going to
give that up. We owe it to our patients to fight
for their care, in spite of the adversity.''

It will likely be a long, costly and bitter
battle, and one that could have national
implications.

``This will be a very, very important case
that could set precedent for any and all Lyme
treatment and any and all insurance coverage
nationwide,'' Ruggio said of Jemsek's legal
battle with BCBSNC.

Jemsek, 57, isn't the only doctor that has
been disciplined by medical licensing boards,
or faced insurance problems, for the treatment
of Lyme disease.

Nationwide, about 30 doctors have faced similar charges for treating Lyme patients contrary to accepted guidelines of care.

Those guidelines were created by the Infectious Diseases Society of America (IDSA) - an 8,000-member organization comprised largely of doctors that specialize in the treatment of infectious diseases - which believes Lyme can be cured with a limited treatment of oral antibiotics, typically not more than 28 days.

The IDSA guidelines state that the long-term use of antibiotics is not only ineffective, but can be harmful to patients.

The IDSA does not acknowledge the existence of chronic Lyme disease, where Lyme-like symptoms last for more than a few months and sometimes years. The IDSA guidelines state there is no solid
diagnostic evidence that infection with Borrelia burgdorferi - the bacteria that causes Lyme - persists past the first few weeks of treatment.

``I keep hearing about people complaining about these long-term symptoms,'' said Dr. Jeff Engel, the state's chief epidemiologist, who testified against Jemsek in last summer's Medical Board hearing.

``I feel for them,'' he said. ``I know their pain is real. I know they've gone from doctor to doctor. I want them to get better. But there's no evidence they have Lyme.''

By contrast, the International Lyme and
Associated Disease Society (ILADS) believes that Lyme should be treated with antibiotics until all of a patient's symptoms are resolved, and that diagnosis of the disease should depend as heavily on hands-on, clinical observation of patients as lab tests.

The Centers for Disease Control and Prevention
(CDC), they note, even recommends against relying solely on diagnostic tests.

The ILADS, with about 300 members of physicians and infectious disease specialists, recognizes chronic Lyme as a legitimate disease, pointing to thousands of patients that have exhibited long-term symptoms consistent with Lyme.

The differences between the two, competing philosophies of care for Lyme disease have ignited a firestorm of controversy and frequently pitted doctor against doctor.

The Lyme War battle lines have been drawn, and it's often patients who get caught in the rossfire.

The CDC endorses the IDSA guidelines, but there is no rule that stipulates doctors must follow them. In fact, the guidelines carry an important disclaimer - a note that the recommendations ``are not intended to supplant physician judgment in respect to particular patients in special clinical
situations.''


``The people who say that this is a set of rules that can't be broken and everybody has to follow absolutely, or a bolt of lighting's going to come down and smite them, clearly it's not that,'' said Dr. Eugene Shapiro, one of the authors of the IDSA guidelines and a professor of pediatrics and epidemiology at Yale University School of medicine.

``The guidelines,'' Shapiro said, ``are meant to provide an unbiased guide by experts of the best scientific evidence to try to help patients.''

Critics of the guidelines, however, argue that too often they have become the default standard when medical licensing boards and insurance companies make decisions regarding Lyme disease treatments.

Dr. Raphael Stricker, president of the ILADS and an oncology specialist with Union Square Medical Associates in San Francisco, said that he routinely treats Lyme patients with long-term therapy, but only because California is one of the few states with legislation that protects doctors from being disciplined for doing so.

Rhode Island offers similar protection, as does New York.

Last December, after the IDSA released its updated guidelines, hundreds of protestors from around the country took to the streets outside Valhalla, New York's Westchester Medical Clinic, home base of Dr. Gary Wormser, the lead author of the IDSA guidelines.

According to an article in The Journal News, protestors waved signs with messages ike ``Wormser lies ... Patients Dies'' and ``Dr. Wormser - You Make Me Sick!''

Wormser declined comment through a spokesperson this week about his involvement with the IDSA guidelines and the criticism they've spawned, referring all questions to the society.

IDSA spokesperson Diana Olson said, ``It's
heartbreaking when you hear stories like that. Our hearts go out to patients who are seeking
other long-term treatment options.

But, to be quite honest, I think that a lot of the folks who believe that they have chronic Lyme disease may, in fact, have other conditions.''

That's small consolation for Katie Jacks. Her son, David, is one of Jemsek's patients that had insurance coverage revoked for longterm Lyme therapy.

``I actually believed their commercials about how they'd always be there for you,'' Katie Jacks said of BCBSNC. ``They haven't paid a penny, even after David had tested positive for Lyme, and long-term treatment is the only thing that has worked.

``It's insulting to have somebody tell you your son isn't sick,'' she said, ``when he's curled up in a ball of pain.''

Pat Smith, president of the New Jerseybased Lyme Disease Association, which represents 24 patient-advocacy groups across the country, said a growing number of insurance companies are refusing to cover long-term Lyme treatment because of the IDSA guidelines.

``Patients are constantly telling us about
their inability to receive long-term treatment,''
said Smith, who has two daughters with Lyme
disease. ``What are they supposed to do, just
continue suffering?''

Shapiro said the IDSA guidelines weren't crafted to insult or deny treatment to any patients, although they're often wrongly judged to that end.
``I think part of the problem is that some patients have taken the guidelines as a bunch of people in white lab coats saying, `You're not sick,' or `You don't have a problem,''' said Shapiro,.

``In fact, there's a lot of evidence that many
of these patients have significant problems,''
Shapiro said. ``Part of the problem is, if their
problem isn't Lyme disease, not only are they getting unnecessary treatment that will provide no benefit, but they aren't getting treatment for what they may have that actually would help them.''

Shapiro said there's a reason insurance companies deny certain coverage. The IDSA guidelines are based on scientific fact, he said, backed by years of research and volumes of clinical studies.

Long-term antibiotic treatment for Lyme disease, he said, doesn't work and carries substantial risk, which the guidelines reflect.

``What you're doing is you're weighing benefit versus risk,'' Shapiro said. ``And if there's no benefit and substantial risk, I don't think insurance companies should be paying for that.''

The IDSA guidelines, though, are coming under renewed scrutiny. Connecticut Attorney General Richard Blumenthal filed a Civil Investigative Demand inquiry last December into the IDSA based on the contention that the group's updated guidelines might harm Lyme patients by restricting care.

The inquiry is also exploring possible anti-trust violations by the IDSA concerning the development of its guidelines and how they are administered.
Blumenthal could not be reached for comment.

An article by the Associated Press, posted last December on The Boston Globe's Web site, quotes Blumenthal as saying of the IDSA guidelines, ``These rules diminish the options available to doctors and their patients in ways that can sanction insurance company decisions to deny coverage, so they can have an economic impact that could be very serious.''

Olson said the IDSA is cooperating fully with the Connecticut attorney general's subpoena regarding the society's guidelines, and that it ``stands behind its method of developing and issuing guidelines for diseases, including Lyme disease.''

Lorraine Johnson, an attorney and the executive director of the California Lyme Disease Association, said the IDSA guidelines are too restrictive.

``They list more things that you can't do than descriptions of what you can do,'' Johnson said. ``And their list of what you cannot do appear to be the practices of their competitors.''

Also, several of the authors who wrote the guidelines have conflicting interests with companies that develop vaccines or other Lyme-related interests, she said.

``These conflicts helped drive the viewpoint of the physicians sitting on the IDSA panel,'' Johnson said. ``Things that become good for the commercial interests get in the way of what's best for the patient.''

A disclosure statement attached to the bottom of the IDSA guidelines shows that five of the 14-member panel that created the guidelines listed potential conflicts of interest, including Wormser, the guidelines lead author, who has received consulting fees from Baxter Healthcare Corporation and research support from Immunetics, a biotechnology company that develops Lyme


Another IDSA panel member has also received consulting fees from Baxter, while another is part owner of Biopeptides, a biotech company that develops vaccines and laboratory diagnostics, including products for Lyme disease.


Still another panel member has served as an expert witness for pharmaceutical giant GlaxoSmithKline; another has a patent pending with a university on a Lyme diagnostic procedure that is not yet on the market .

Olson, the IDSA spokesperson, said the
guidelines were based on scientific evidence and proven research, not the influence of commercial interests or insurance companies. The guidelines, she reiterated, aren't used to
deny coverage or exclude certain doctors.



Jemsek, ironically, is a member of IDSA
and offered praise for the society; but not on
the issue of Lyme ``I think the IDSA is a wonderful and very talented group of professionals,'' Jemsek said. ``They're just dead wrong on this Lyme issue.'' Lyme Wars

connie mc, PLEASE SHOW IN YOUR 1ST SENTENCE THAT BETTYG HAS A REFORMATTED VERSION BELOW CONNIE'S VERSION .... EASIER READING! THANK YOU.

[ 18. February 2007, 12:58 AM: Message edited by: bettyg ]

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lou
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Well, if the patients in NC do not get organized and start fighting back, nothing is going to improve for them. Is this not obvious?

This is an excellent article. Every NC lyme patient should make a copy and send it along with a letter to their legislators, then follow up with visits. Complaining amongst ourselves isn't going to get us anywhere.

I don't understand why patients there have not set up a continuous picket at the state medical board offices. Make a list of people who can come and spend a few days. Assign times. Get the place covered and then start calling the press.

Or am I just talking to myself again?

Why should any doctor fight for us when we won't fight for ourselves?

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AP
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quote:
Originally posted by Osp:
Some time ago, I sent a letter to the board, I think, in support of Dr Jemsek. I later received a very nice Thank You note from Dr Jemsek.

Could Dr Jemsek's patients sue the board? They have been harmed.

About 100 people out of 100,000 are very active in this. The rest sit on our asses. I know apathy is a symptom of Lyme but this is rediculous.

AMEN! I see so many posts for ther other Dr. J, but seriously - does anyone realize that Jemsek has a research lab dedicated to Lyme? It makes me so sick that no one actually cares. (or at least act like they do)

I'm not saying that one doctor is more important than the other, I'm saying that they should be equally important.

--------------------
Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�

Myspace: http://tinyurl.com/5p64ed

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Kayda
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Dr. J is my dr. He is a wonderful brillilant Dr. It is a shame what has happened to him.

Who keeps an eye on the Medical Review Boards????

Kayda

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8man12
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Betty, connie didnt probably ignore you,you are wearing out are scroll buttons,with all the reposts.To me that is worse on my neuro lyme then anything.Seeing the same stuff over and over.Not attacking you,but why must we have so many reposts.

Where are all the lyme foundations,and all there money that they have donated to them.
Dr. B. quit his practice to help lyme disease.
This lose of lyme doctors is critical,they need professional,and very lyme literate,doctors backing them up in a courtroom.
In a courtroom,it is yes,or no and to the point.
They wont use the letters as evidence,because we are just regular people.

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Lymied
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We have NOT been sitting here idle in NC. Actually there are two organizations going strong, the NCLDF (North Carolina Lyme Disease Foundation) and TIC*NC (Tick Borne Infections Council of NC).

NCLDF has been in existence I believe six years and TIC*NC is going on three years this May.

Many of us have met with Government Officials and Public Health Officials long before the NC Medical Board brought Dr. J in for the hearings.

We have been in close correspondence with Dr. J and have been acting on his lead. It was a very delicate situation with the hearings and he was concerned if we picketed and acted on impulse that his hearings might be influcenced in a negative manner.

So that is where things have stood. We are attempting to organize, he knows he has our support. It has been an emotional and taxing time and personally from my vantage point we have all had to step back and catch our breaths for the next push.

--------------------
�Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson

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bettyg
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lymied, thanks for the update on your 2 NC groups! [Wink]
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Lymied
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Your welcome Betty!

It is so frustrating - the entire situation.

Thanks you all for your concern!

--------------------
�Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson

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lymewreck36
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Some folks have been asking how to contact Jemsek with emotional support.

I am trying to read here if that has been addressed clearly. But since I am in a lot of pain today post-hysterectomy, I can't sit here and sift through posts any longer.

Here is an email address I received just two weeks ago in a newsletter from his office. I have responded to this address with words of compassion, support, admiration, and prayers. Let's all do so.

www.JemsekSpecialty.com

mary

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ConnieMc
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Things are not going well for Dr. Jemsek right now. Please, everyone who has the energy and time, please drop him a note or email.


14330 Oakhill Park Lane
Suite 201
Huntersville, NC 28078
Phone: 704.987.2111
Fax: 704.987.2113

[email protected]


There are evil powers at work. They are trying to take him down. He is fighting as hard as he can. And it is all because he knows the truth about Lyme. And wants to be able to help us.

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bettyg
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connie, thanks for his email; i just wrote him a long email telling him i hadn't forgotten him, etc. and thanking him for his years of chronic lyme treatment, etc.

thanks for making it easy for folks like me! [Wink]

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bettyg
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SURPRISE!! [hi]

I just got this email back from Dr. Jemsek, and want to share it with you all. Please email his above email address as he would LOVE hearing from you also!!!


March 18, 2007 9 am

"Dear Mrs. Gordon,

Thank you for your kind thoughts. If you don't mind, we'll add you to our mailing list.


Keep those positive thoughts coming. As bad as this disease can be, and despite the amazing and evil forces which suppress the truth and thereby cause incalculable harm to their fellow human being, the truth always prevails.

We will prevail.
***************
Kind regards,
Joe Jemsek

note from Betty: I'm copying this link, and will send it to Joe so he knows many others nationwide are thinking of him and wishing for a GOOD OUTCOME to preserve his chronic lyme treatments for us all that go to him!!!! [group hug] [kiss] [group hug]

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bettyg
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up for others to read joe jemsek's comments above! [Big Grin]
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bettyg
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up..
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stella marie
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BUMP THIS UP, UP , UP!

--------------------
Stella Marie

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