posted
If this does not belong in medical, I'm sorry and please post where it belongs.
In a North Carolina paper today, an AP article with a picture of Dr. J (North Carolina) "Dr. J. is known for treating patients he believes suffer from chronic Lyme disease, a form of the illness the medical establishment doesn't believe exists.
The dispute could cost J. his license to practice. In December, the North Carolina Medical Board charged him with improperly diagnosing Lyme disease and treating it via long-term antibiotics, which violates the care standard set by the Infectious Disease Society of America. The state board will hear the case in June."
My daughter is getting her life back thanks to the care she has with Dr. J. My husband has recently began treatment of chronic Lyme after 14 years of misdiagnosis, or more accurately, no diagnosis except a blanket, "must be fibromyalgia".
Last week, my daughter had an appointment for IBS with a pediatric GI at a university hospital in NC. I had brought a brocure on pediatric Lyme Disease as the first dr she had seen had expressed an interest and told me he had never had a patient with Lyme before.
We did not see this man, but another in the practice last week and when I gave him the literature to pass along to his partner, his friendly demeaner changed completely and he wanted to where my daughter contracted Lyme.
I told him Connecticut and he told me that he would not discount that, but that if I had told him NC it would not be true as, and I quote him, "There is no Lyme Disease in NC." According to him, any doctor that says there is is not telling the truth.
In a comment that would have almost been humerous if it was not so tragic, he told me that the ID staff at his hospital are "the best in the world, with international reputations" and they say there is no Lyme here. After all, "they work with the CDC!"
At that point, I just wanted to get out of there, as the sad irony is, four years ago my daughter's local pediatrician refused to treat her after her tick bite,knowing the history of my father also contracting Lyme in the same yard.
Only when she developed the bullseye rash did her ped consult with an ID dr, at this hospital, and come to find out, this dr, "of international reputation" did not even know to prescribe what the CDC required at that point, leading her to be undertreated and giving the infection a chance to take hold.
To mention that would have been wasted words, and his attitude was so hostile at that point, that I thought it wise to just get out of the office.
Like I said, if this is in the wrong forum, I apologize. If you have not yet written in support of Dr. J. please consider doing so. None of us can afford to lose any of the physicians who are literally putting their professional lives on the line to serve us.
posted
I think this story should be answered with letters to the editor, especially by NC residents, to show that there are lyme cases in that state. With a copy to the Governor. That state epidemiologist is doing a poor job for the people of his state.
The link to the story is in this thread, posted by sharon in general support forum:
It would be hard to know where to begin in writing letters to the editor, there is so much that could be said. Maybe pick one or two points and keep it relatively short, so it might have a better chance of getting printed. Link to editor is in that thread (in the story link). Easy to find.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
What newspaper was this in? I knew an AP writer was doing a story, but didn't know it was already complete.
Posts: 2276 | From NC | Registered: Oct 2000
| IP: Logged |
posted
Thanks for the link to the entire article in General. My local paper, The Hickory Daily Record, only printed a short excerpt from it, putting Dr. J. in a very bad light. I will write to the editor tomorrow.
Posts: 25 | From NC | Registered: Jul 2005
| IP: Logged |
posted
ARGGHHH!!! you know this is just makes me so angry! I got lyme the first time 10 years ago and the attitude was exactly the same. There has been no headway made in the attitude here.
The whole thing smells like a cover-up..
I think if the cdc had a chance they would say lyme doesn't exist at all.
pattiecake
Posts: 687 | From PA | Registered: Oct 2004
| IP: Logged |
posted
I just have to say that I love Dr. J, and his staff... I got a happy Easter call from one of his nurses today who knew I've been having a rough time. It was really nice.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
AP, what a wonderful gesture they made to you; calling you to check on how you were doing! That's beyond service!
I called my llmd Feb. 10 after my major herx plus sent him a detailed email of my sx next day; to date he has NEVER called me back nor emailed.
I wish I had your service; now, that's a very efficient and effective LLMD staff/MD!
IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
It needs to be made clear to the editor/writer why there are so few studies & a paucity of data showing the efficacy of long term abx. Yet our tax $ goes to studies to disprove the ONLY efficacious therapies we have. What about spending our tax $ for better diagnostics & therapeutics?
These MDs can't identify the etiology of the "other" so-called illnesses we suffer from, criticize lt abx, yet have no safer or more efficacious modility for tick bourn illnesses. Why don't they find common ground and work together for the benefit of the patient?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
There are several versions of this article. Here is the one published in the Raleigh NC paper.
The Greensboro NC newspaper published only parts of it, and conveniently managed to take out most of the positive parts, including the patient interviews. They entitled theirs "Doctor may Lose License Over Lyme Disease cases". So much for objective reporting. And so much for reporting both sides of the story.
Posts: 2276 | From NC | Registered: Oct 2000
| IP: Logged |
Remember that shorter, concise letters have a better chance of getting printed. Is the NC Lyme Foundation group thinking about writing an Op-Ed piece for the more important papers which carried this story?
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
This afternoon, a friend told me that she read an article about Lyme at the beach this weekend. It was in the Myrtle Beach Sun Times (South Carolina). The same article, but the short version was used.
Compared to the articles in Wilmington & Raleigh, the article on the Myrtle Beach website omitted everything after: " 'It's not that the people diagnosed with chronic Lyme disease don't have problems,' he said. 'It's that chronic Lyme disease is not the problem." The part that was omitted begins "Does it Exist?"
I've spent a good part of the day trying to find an e-mail address for Tim Whitmire (Associated Press). Google shows he's a rather prolific writer, but I found no contact info.
If we could get info to him that tells "the rest of the story", then he could end up with one of the best writing assignments of his career. It appears to me that one source gave him all the contacts he used in the article. It's so sad that NO one from ILADS was interviewed.
[ 19. April 2006, 10:58 AM: Message edited by: cbb ]
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
cbb,
Tim Whitmire actually visited J Clinic and also attended a seminar in Raleigh on Lyme back on March 25th. I was at that seminar, and one of the reasons for it was to show the AP writer how much support there is for this doctor. Notice at least one version of the article stated that Dr. J got a standing ovation at this seminar.
He also contacted the NCLDF and comments from Beth Jordan, the founder, were in the longer version of the article.
The longer version was much better then the shorter version. The short version was published in my local paper, the Greensboro News and Record.
What I am unsure of is if Tim Whitmire actually writes the 2 or 3 different versions, or the various newspapers edit the article themselves. The articles seemed to have different titles as well.
I felt the long article was much more objective and told both sides of the story. Pity not everyone got to see that one.
The long one had patient interviews as well.
He did then make contact with the "other side" to get their opinion, and as expected, he heard a different story.
IMO, my biased opinion, that is, I felt like Tim Whitmire was leaning more towards supporting the "other side". Don't know if he is pressured to do this, or what.
I am writing letters to local papers. Fat chance they will be published, but it is worth a try.
Posts: 2276 | From NC | Registered: Oct 2000
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
The problem is: if you don't have an MD attached to your name and you're not on staff with a hoity toity teaching hospital, you're fighting an uphill battle.
Hence the importance of the Columbia Lyme research center. Folks, we need the center open ASAP.
Perhaps we can mention Columbia in our letters. We need the media to be able to get our side of the story from MDs at a teching hospital as well.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
posted
N.C. doctor faces board discipline over Lyme disease treatments
By TIM WHITMIRE : Associated Press Writer Apr 15, 2006 : 12:05 am ET
HUNTERSVILLE, N.C. -- Nearly a quarter-century ago, Dr. Joseph Jemsek was the first physician in the Charlotte area to diagnose a patient with AIDS. He became known for devotion to patients often marginalized because of the illness's association with homosexuality and drug use.
Today, the 56-year-old Jemsek is known for treating patients he believes suffer from chronic Lyme disease, a form of the illness the medical establishment doesn't believe exists. When given the standard blood test for Lyme disease, many of his patients test negative.
The dispute could cost Jemsek his license to practice. In December, the North Carolina Medical Board charged him with improperly diagnosing Lyme disease and treating it via long-term courses of intravenous antibiotics, which violates the care standard set by the Infectious Diseases Society of America, or IDSA. The state board will hear the case in June.
"That would be one of the greatest injustices in the history of the state," Jemsek said. "I don't shoot drugs -- I just prescribe too much tetracycline."
It's not just tetracycline that's gotten Jemsek in trouble, but a whole array of antibiotics, administered in varying doses, combinations and schedules, both orally and intravenously. His patients say the treatment is the only thing that provides relief of their joint pain, fevers, headaches and mental confusion -- a series of symptoms they say other doctors struggle to diagnosis and treat.
But many say Jemsek is on a dangerous path.
"There's not a great deal of published evidence that supports prolonged antibiotic treatment," said Dr. Paul Mead, based in Fort Collins, Colo., and the leading Lyme expert for the federal Centers for Disease Control and Prevention. "There is, however, evidence that these treatments can be harmful."
Doctors who diagnose patients with Lyme disease without solid evidence risk missing a correct diagnosis, said Dr. Eugene Shapiro, a pediatrics professor at the Yale University School of Medicine who helped draft the treatment guidelines Jemsek is accused of violating. Long-term antibiotic treatment also carries risk of infection with resistant bacteria and fungi, high costs and encourages the development of antibiotic-resistant "superbugs" that endanger the entire population.
"It's not that the people diagnosed with chronic Lyme disease don't have problems," he said. "It's that chronic Lyme disease is not the problem."
------
Lyme disease is named after Old Lyme, Conn., where it was first described in 1975. Its most common symptom is a skin rash that appears around the site of a tick bite, and it can be accompanied by fatigue, as well as pains in the joints, muscles, head and neck. In the disease's later stages, it can affect the nervous system and the heart, and cause swelling of joints.
The Lyme bacterium is passed to humans by bites from infected deer ticks; the bulk of cases are concentrated in the northern United States.
In 2005, the most recent year for which data was available, there were more than 21,304 cases reported to the CDC -- but just 49 cases in North Carolina. "There is Lyme disease in North Carolina," said state epidemiologist Jeff Engel. "It's just rare."
The IDSA's care guidelines, set in 2000, call for a clinical examination of a patient, followed by lab tests that confirm a Lyme diagnosis. Prolonged intravenous antibiotic treatments should last at most for four weeks -- and only for patients with significant complicating neurological symptoms.
The IDSA also found no known cause of symptoms exhibited by patients who remained unwell after standard Lyme treatment, concluding there was no evidence they could be helped by long-term treatment with antibiotics and adding that "chronic Lyme disease" is not an appropriate diagnosis.
"In study after study, when patients who carried the diagnosis of chronic Lyme were re-evaluated in university medical centers, over 50 percent had no credible evidence of ever having had Lyme disease," said Dr. Gary Wormser, a member of the IDSA panel, in an e-mail interview.
The guidelines are being revised, but Shapiro said few major changes are expected. During the revision process, Shapiro said, an IDSA panel looked at letters from Jemsek urging reconsideration of the group's view of chronic Lyme disease.
"It's not like his letters were burned," he said. "Everyone read them."
------
Jemsek admits there are no studies that prove long-term antibiotic treatment is effective. The only major study was stopped by the lead investigator, Boston University's Dr. Mark Klempner, because data showed no difference in the outcomes for patients who received antibiotics and those who received a placebo.
The study, according to Jemsek and chronic Lyme advocates, is flawed and unreliable. Klempner declined to be interviewed, but Shapiro and other Lyme specialists do not hesitate to cite his findings, published in 2001 in the New England Journal of Medicine.
Jemsek said he has seen his own trial-and-error methods -- different drugs, different combinations, different treatments -- work with too many patients to stop what he is doing. He is not bothered that in many cases his patients' blood does not test positive for Lyme disease.
"We're too married to our tests," he said. "Doctors just don't have time any more to think for themselves. ... I do the test, but I recognize the fallibility of the test. What's most important is how they (patients) respond to various therapies."
Doctors like Shapiro and Wormser take a dim view of Jemsek's reliance on anecdotal evidence and his sweeping assertions that the CDC and others are trying to sweep a burgeoning epidemic under the rug. While the number of cases reported last year was up 1,500 from 2004, the number of reported cases was lower in both years than the 23,764 cases reported in 2002.
"They're scared to death at the CDC, I think, that it's going to get out of control," Jemsek said. "I think the CDC fears they're going to have a mass hysteria, which they will because this is just getting bigger and bigger."
Jemsek's patients, many of whom are referred to him after seeing doctor after doctor without a diagnosis, swear by him. When he spoke to a crowd of nearly 100 at a March seminar on Lyme disease held in Raleigh, he was greeted with a standing ovation.
"He's honest, compassionate and definitely not afraid to stand up for what he believes to be true and right," said Beth Jordan, a Raleigh veterinarian and head of the N.C. Lyme Disease Foundation, an advocacy group she founded.
Jordan estimates she saw between 20 and 30 doctors in North Carolina and Virginia after falling ill in 1999.
"They would run the Lyme antibody test, it would come back negative and they would tell me I didn't have Lyme," she said. "I finally self-diagnosed. ... I could remember a tick bite I had eight months before. My symptoms were very characteristic. I just really believed I had this illness."
She started seeing Jemsek in 2002. "He's taken my health to a new level," she said.
Geri Brower, a 42-year-old Asheboro accountant who said she fell ill after a 2001 tick bite, has seen Jemsek for nearly four years. Jemsek said it took months of treatment and three or four kinds of antibiotics to find a combination that addressed Brower's palsy and severe mental confusion.
"We couldn't get her brain working," Jemsek said. "She had all kinds of co-infections."
Dr. Sharon Grundy, a general practitioner in Telluride, Colo., has referred multiple patients to Jemsek. She said Lyme is too new a disease for doctors to start drawing firm conclusions, adding she believes Jemsek's treatments are responsible.
"I don't think he's doing anything negligent. He checks labs appropriately, none of the antibiotic doses have been out of proportion to what's recommended," she said. "He's doing something out of the norm, and I think sometimes the medical establishment, they're not pro that."
------
In Rhode Island, a Lyme epicenter, lawmakers passed a bill in 2002 to shield doctors who treat Lyme patients with long-term antibiotics from punishment.
The bill's author, Rep. Peter Ginaitt, D-Warwick, is a registered nurse and medical technician and said he understands why the establishment is leery of people like Jemsek.
"But when it comes down to Lyme disease, I am very much convinced from medical professionals and other people who have seen the benefit from a long-term antibiotic regimen," he said. "Sometimes you have to trust the gut of people who are seeing the benefit of something."
In North Carolina, which has no such law -- and no immediate prospect of one -- Jemsek awaits his date with the medical board.
"I've been open about this, I've never been clandestine," he said. "I knew I was at risk. We're doing things that make a difference. It's not like a renegade operation."
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic