We are FINALLY on a roll. We need help to keep up the momentum. Please take a few minutes to help those with Lyme and those who will have it in the near future.
We need letters to editor please, a lot. The Star Ledger is the largest NJ paper and we need to keep them reporting... and set the record straight.
Clinic run by controversial Lyme disease doctor files bankruptcy
The Associated Press
CHARLOTTE, N.C.
| A Huntersville clinic run by a doctor disciplined by state authorities for his work with Lyme disease patients has filed for bankruptcy.
The Jemsek Clinic, which was recently renamed the Jemsek Specialty Clinic, owes more than $2 million to its top 20 creditors, according to documents filed in U.S. District Court in Charlotte and reported Wednesday in The Charlotte Observer.
In July, the North Carolina Medical Board placed restrictions on the Lyme disease practice of Dr. Joseph Jemsek, but allowed him to continue seeing patients. Jemsek was disciplined for diagnosing and treating Lyme disease outside of mainstream medical standards.
The Chapter 11 filing allows his clinic to continue operating while it tries to restructure its debt.
"For 27 years, I have been focused on patient care, and that focus will not change," Jemsek said in a statement.
Among the creditors Jemsek names in the court filing are Scottish Bank ($1.2 million) and First Citizens Bank ($716,000), as well as Mecklenburg County, which is owed $22,000 in taxes.
Joyce Poole, a spokeswoman for Jemsek, said many insurance companies terminated their contracts with Jemsek around the time of his medical board hearings earlier this year. Patients must now pay out of pocket at the time of service and seek reimbursement from their insurers later.
Once one of the region's best known doctors in the field of AIDS/HIV treatment, Jemsek has now decided to focus solely on Lyme disease.
Jemsek was charged by the board with incorrectly diagnosing people with the tick-carried disease and with administering intravenous antibiotic treatments that went on for much longer than recommended by infectious diseases experts.
The board now requires that Jemsek's patients sign consent forms indicating they understand that Jemsek's treatments differ from those offered by other doctors.
Everyone is just really busy and typing too fast...I am entirely guilty of this myself!!
Posted by Tincup (Member # 5829) on :
I MUST appologize. I am trying to do 500 things at once and am just running around messing up all over the place. TOO much pressure and stress. I am sorry.
The "new" formatted computer is messing me up and REALLY slowing me down and frustrating me too.. so please forgive me. And...
Thanks for pointing out my bloopers. I am glad you all are paying attention.
I actually noticed that I forgot to add the link too.. which I just did.
Lymedesign.. thanks for reading .. no.. writing your letter. See.. I am losing it!
I am headed over there now to read it.
Might you place it here as a sample letter to give folks an idea of what to write.. or how to?
I was going to try to make samples.. but am drowning here in tons of work.
THANKS!!!!
Anyone who does write a letter.. and can share samples here on this post.. it would help those not as comfortable to write something.. so please feel free to help out.
And please do understand I am TRYING to get a lot done.. just running VERY low on power.. brain and otherwise.. under this load.
Posted by lymedesign (Member # 8791) on :
Good Idea Tin Cup, Here it is. This is the letter I Sent today. I hope it does justice to the people on this board who I believe helped me so, so much.
November 3, 2006
Dear Ms. Angela Stewart,
First and foremost I would like to thank you for bringing attention to new newly published CDC guidelines regarding Lyme Disease treatment. These so-called new guidelines are so archaic in their approach to treating Lyme Disease, that one has to wonder what is really motivating the CDC and Infectious Disease Society of America. This disease is the second fastest growing infectious disease in the United States, yet it lacks government funding for research and education. Why is this disease being ignored????
There have been many published articles to support the fact that only a small percentage of people and even a smaller percentage of children get the typical "bull's-eye" rash. Also, the CDC admits that the blood tests used by the medical community to "diagnose" Lyme Disease were initially developed for surveillance purposes, not for diagnosis. To refuse treatment for individuals who exhibit all or any signs of Lyme Disease is inhumane. One point that is universally agreed upon is that delaying treatment leads to a more chronic and harder to treat infection.
New Jersey is a Lyme endemic area, as is most of the northeast. If the medical community and the infectious disease doctors follow these new guidelines, it will be devastating to those who are currently diagnosed and to the thousands and thousands of people who will be falsely misdiagnosed in the future.
Ask around your community and I bet almost everyone you talk with has a family member with Lyme or knows of countless people who have the disease.
My daughter was refused treatment by an infectious disease doctor at Jersey Shore Medical Center and at Robert Wood Johnson Pediatric Emergency in January 2006. She exhibited weakness, migraines, muscle and joint pain, vertigo, nausea, loss of vision, seizures, chest pain, shortness of breath and had a history of a tick attachment. However, because she lacked the "bull's eye" rash, she was turned away. She missed six months of school because her infection was so severe. Had it not been for the Lyme Disease Association and their knowledge of physicians who truly understand this disease, she would not have received proper treatment leading to her recovery.
I truly cannot believe how distorted the truth has become regarding Lyme Disease and its treatment. I have never seen such a politicized health care concern.
Sincerely,
...."Lymedesign" New Jersey.
Posted by Tincup (Member # 5829) on :
HA! Design.. you are WAY too fast for me!
I just read the article and then your response.. GREAT letter... and came here to post a link to it cause it was too good to let slip by... and I wanted EVERYONE to see it.
Here is the link anyhow.. just to show I AM doing something!
I live in MA and work in NJ. I sent the following letter this morning after a co-worker sent the article to me:
Angela,
I read your story on the new Lyme guidelines with great interest as my wife is battling the disease right now. Anyone who says that long-term antibiotic therapy is not required in some cases either does not know much about the subject or is being influenced by outside interests. I should point out that I think your piece was fair and objective - you were only reporting the facts.
If you have ever seen someone not able to sleep because of joint pain and become almost debilitated by short-term memory loss and confusion, you would know what I mean. This whole situation just leaves me scratching my head. If you treat someone with chronic Lyme with long term antibiotics, and the symptoms go away, what is wrong with that? I personally know people who have become symptom free only after years of antibiotic treatment. In our case my wife was on intravenous antibiotics for three months and oral antibiotics for three months. Having been off for about a month now, the symptoms are coming back. Most Lyme literate doctors will tell you that you should be on antibiotics until you are symptom free for at least two months.
Part of the problem with Lyme is that the testing is completely unreliable. I do not understand why, for a disease that is quickly on the rise that so significantly impacts those afflicted, why isn't there more resources put towards research to develop acceptable testing and treatment protocol? The "studies" referred to by the Infectious Disease Society are certainly not of the scale of other research.
One last thought. Why can doctors put teenagers on antibiotics for acne for years and there is no issue? Left untreated, acne will go away. Yet, Lyme will only progress and cause neurological and other severe issues, yet a 4 week treatment is enough?
Posted by Tincup (Member # 5829) on :
Oh jmill..
My heart breaks even more to hear your words.
I am so thankful that you wrote to them.. and in such a good way. This letter will impact someone for sure. It got to me.
I do hope your wife will be able to get the treatment she deserves. With your advocacy.. you are bound to make a diffference. Keep up the good work.
Posted by Tincup (Member # 5829) on :
What NOT to say in a Letter to the Editor.. which I just did.
But I know this paper won't print it anyway... so what the heck. I feel a tad bit better for it.
Dear Editor,
The problems facing Dr. Jemsek are shameful to say the least. The North Carolina Medical Board needs to be taken out behind the wood shed for targeting and punishing a doctor who has helped so many people who's lives were destroyed by other North Carolina doctors who couldn't tell a tick from a turkey.
Lyme disease patients are losing their highly skilled, compassionate doctors, who know how to treat tick borne diseases, to the "system", which in this case is so rotten it could stink up an entire planet. I can't believe the officials there were stupid enough to fall for this evil plot perpetuated by a handful of money grubbing people and that they allowed themselves to be sucked in, hook, line, and sinker to a monopoly run by a bunch of wart hogs.
As a support group leader I have received thousands of desperate calls for help over the years and they continue to come in on a daily basis. These patients are so sick now because their previous doctors followed the medical boards recommendations and theories and they DIDN'T work!
If our doctors continue to be targeted, we will have to start sending the growing number of chronically ill patients to the medical board doctors homes and offices so THEY can take care of them.
Then they can tell these sick people that they refuse to treat them for their ongoing infectious diseases and sit there and watch as they suffer in pain, deteriorate, and die. I don't have the heart to do it any more, especially when I know the officials know better and can fix the situation.
Sincerely,
``````````````````````````````````````````````
Wart hogs? Possibly NOT the words to use.
Posted by KENNEDY (Member # 9628) on :
This is what I'm sending off.
Dear Editor, I'm from PA not from N.J. but it doesn't matter what part of the country
you come from, because this disease has no borders. It's free to cross county and state lines, it's free to terrify,
free to cause pain, depression, hopelessness and that's exactly what the new guidelines are doing to us.
So, not only do we have to fight the disease from the ticks we also have to fight for the very treatment that helps us fight the disease.
In June 06, I went to my Family Dr. with flu like symptoms and a bulls-eye rash.
So following the IDSA GUIDELINES I Was given a 21 day supply of Doxycycline and was told that this treatment will take of it.
After treatment, still having symptoms found a LLMD and had testing done Aug. 10th and tests came back positive for Lyme. So..................so much for the 21 day cure.
Apparently this disease hasn't affected the people that make these guidelines,
apparently these people aren't losing their pets and watching their
loved ones suffer the physical and emotional struggles, not to mention the financial drain
Which by the way because of these guidelines gives the insurance companies
an excuse to deny coverage. I guess the guidelines won't change until then.
Are our families and our quality of life less important than theirs. I guess they think so.
Posted by sometimesdilly (Member # 9982) on :
Posting here too for requested sample letter-- did i do that right? i get tangled up by multiple threads.
(Dear Ms. S)
Thank you very much for your balanced article on the ISDA lyme treatment guidelines.
I think is important, however, to point out several misleading statements by Dr. Shapiro,one of the guidelines' authors.
In your article, Dr. Shapiro states that the guidelines provide "plenty of room for clinical judgment" on the part of physicians.
It is difficult to imagine a more disengenious comment by Dr. Shapiro. In fact, as he well knows, they do no such thing. The guidelines very specifically state that clinical judgement should NOT be used.
Why is Dr. Shapiro apparently unwilling to clearly represent one of the primary edicts of his guidelines now that they are in the public eye?
In addition, Dr. Shapiro's statement that lyme patients taking antibiotic therapy for "too long" develop antibiotic resistance is simply untrue. His contention that some patients develop serious infections from IV lines, though, is certainly accurate. My husband developed serious side effects from the chemotherapy he underwent for his leukemia. Does that mean his doctor shouldn't have offered chemotherapy to restore his health, even to save his life? Of course not. Why then such a different standard for Lyme?
Because as I know all too painfully, Lyme can be a a serious, even fatal disease. Undertreated while I was pregnant four years ago (3 weeks of standard dose antiobiotics), I now have brain encephalitis caused by neurological lyme. Even more painful to me, the precious son I was carrying at that time was infected in utero and now has lyme too.
Allowing the ISDA guidelines to stand guarantees many more horror stories of needless suffering, including by infants and children, and yes, death.
Posted by Tincup (Member # 5829) on :
Kennedy and Dilly..
I don't know what to say. I wanted folks to write.. that is true.. but I do have a problem with this project.
Problem is- I actually have to read what has been written.. and it isn't fair.. because it breaks my heart over and over again. Truth is.. I don't think they pay me enough for this... even though they don't pay me at all.. but my point being... there isn't enough money to make this job a good one.
Both of your letters touched me and brought tears for your suffering. I am so sorry this has happened to you all... and so many others.
I thank you for taking time to write. Maybe with all our efforts combined we can prevent this situation from continuing.
Thanks again..
Posted by Tincup (Member # 5829) on :
Dear Editor,
Thank you for your news coverage of the newly released IDSA Lyme disease treatment guidelines. Your article served to strengthen my feeling that those writing the guidelines are more wicked than I could possibly imagine.
After 20 years as a volunteer patient advocate, I have extensive experience dealing with their growing number of mistakes, which happen to come in the form of human lives.
Many of the people involved in the new guidelines created the last edition too, which caused countless numbers of people to become chronically ill and/or disabled. Many of these people have since died, including members of my own family. The new guidelines they have created are even worse.
The authors, who are so bold as to dictate what patients don't need, which in turn saves on insurance dollars, admit they don't even see many chronically ill Lyme patients.
No doubt in my mind! Most of us who are chronically ill after all these years originally came from that camp. Burned once, shame on them. Burned twice, shame on us.
Bottom line, if Camp A was right, there wouldn't be a Camp B.
Sincerely,
Posted by MaryMi (Member # 459) on :
Tincup,
I e-mailed Angela Stewart from the Star Ledger and did receive the response "pasted below"
Dear Mary from Michigan,
I have heard from many our readers today who are as upset as you are. Thank you for taking the time to share your thoughts.
Angela Stewart -----Original Message----- From: Sting [mailto:] Sent: 11/3/2006 12:45 PM To: STEWART, ANGELA Subject: Lyme Disease Treatment
Angela,
There is something very nasty going on here...long term treatment for Lyme Disease is many times needed...or at least re-treatment when symptom present themselves again. I have 13 years of experience with this horrible disease and consider myself an expert. How many of these so called experts have lived with this disease themselves?
Not only do I have chronic Lyme, I also have 2 children that suffer with various symptoms. My son would have been diagnosed with dementia if he would have been an elderly person instead of a 7th grader. Re-treatment saved my son and he is now on the Presidents List in college...we still battle with symptoms on and off including hand tremors.
There is something stinking to high heaven and many, many, people are going to suffer extremely because..many in high places are seemingly being "bought"
Yes, there are many studies out there that show how this Bb bacteria can evade the immune system. The FDA doesn't require Labs to test for Lyme specific bands and so on. What a cruel joke thay are playing on the American people! What a "sick" world we have to live in... But I will remember...what goes around, comes around.
New Lyme disease guidelines prompt patient protests
Friday, November 03, 2006
BY ANGELA STEWART Star-Ledger Staff
New guidelines that discount the existence of a chronic form of Lyme disease and discourage long-term antibiotic treatment are stirring up controversy about how best to manage the tick-borne illness.
The guidelines also recommend against combining antibiotics to treat the disease, in addition to giving a thumbs-down to experimental or alternative therapies -- things like hyperbaric oxygen therapy and vitamins/nutritional supplements.
Members of the Infectious Diseases Society of America, which wrote the new guidelines, contend they are based on the best scientific evidence available. The Alexandria, Va.-based society represents physicians, scientists and other health care professionals. The guidelines were published in the Oct. 2 issue of the Journal of Clinical Infectious Diseases.
"These guidelines are based on more than 25 years of (clinical) experience and scientific studies ... unproven and experimental therapies are not endorsed," said Eugene D. Shapiro, a professor at Yale University School of Medicine who helped draft the guidelines.
But some Lyme patients and advocacy groups, as well as doctors, said those suffering from the disease will be harmed.
"They remind me of the Ten Commandments. They are full of 'Thou Shalt Nots,'" said Jeannine Phillips, 56, of East Brunswick, who heads LymeQuest, a local support and advocacy group.
The Jackson-based Lyme Disease Association Inc., a national patient education and advocacy organization, has started a petition drive on its Web site (www.LymeDiseaseAssociation.org) to protest the guidelines. More than 9,000 signatures have been collected, as have many personal stories.
For instance, there are reports from other states of pharmacists refusing to fill antibiotic prescriptions for patients, Phillips said.
The standard course of antibiotic treatment for Lyme is three to four weeks, but some patients end up being treated well beyond that, in some cases for months or years.
"One person had their insurance company deny treatment because the guidelines do not recognize Lyme can be a chronic disease," said Pat Smith, who heads the association. "These (guidelines) are absolutely devastating."
Lyme disease is transmitted by a tick bite and is sometimes characterized by a round, red lesion with a bull's-eye appearance. People who are bitten may experience joint pain and flu-like symptoms, such as muscle aches, fever and fatigue.
If left untreated, the bacteria can cause heart palpitations, arthritis, severe joint pain and swelling, short-term memory loss and chronic neurological problems.
The number of Lyme disease cases in New Jersey surpassed 3,000 for the first time last year, making the Garden State third in the nation for reported Lyme cases.
Shapiro, a professor of pediatrics, epidemiology and investigative medicine at Yale, said more than 95 percent of those who get Lyme respond to a short course of antibiotic treatment.
"If there was evidence that prolonged antibiotic treatment was beneficial, I would jump right on the bandwagon," he said.
If kept on antibiotic therapy too long, patients developing antibiotic resistance or even infection from intravenous lines, he said.
Shapiro said the new guidelines, which address treatment at different stages of the disease, provide "plenty of room for clinical judgment," are meant to assist doctors, not dictate to them.
Because Lyme symptoms can be very nonspecific and in some cases mimic other diseases, such as multiple sclerosis, diagnosis can be difficult. This is especially true in cases that lack the identifying rash or for which there is no positive blood test.
And when it comes to chronic Lyme, the new guidelines contend "there is no convincing biologic evidence" to support its existence in patients who have been appropriately treated with recommended antibiotic therapy.
Officials at Horizon Blue Cross Blue Shield of New Jersey called it "rare" that antibiotic therapy -- either orally or intravenously -- would be necessary for more than four weeks.
"This is the period of coverage defined in our policy," said Stanley E. Harris, Horizon's senior medical director.
That may be so, but expect patient suffering to increase, as it will be hard to find doctors willing to treat them, others contend.
"If a disease can be so controversial, how can any guidelines be rigid or accepted as the standard of care?" asked Robert C. Bransfield, a Red Bank psychiatrist who sees many late-state patients suffering from depression, fatigue and cognitive impairment. "They are a step backward."
Other doctors, however, say they welcome the additional direction the guidelines provide.
"I personally think they are on the money," said Jerome Levine, chief of the Infectious Disease Division at Hackensack University Medical Center.
Angela Stewart covers health care. She may be reached at [email protected] or (973) 392-4178.
� 2006 The Star Ledger � 2006 NJ.com
Posted by tailz (Member # 10014) on :
GREAT letters;) I sent this one off:
Dear Ms. Angela Stewart,
Thank you first for bringing attention to the newly published CFDC guidelines for Lyme Disease. I was recently diagnosed with Lyme Disease, and quite honestly, I think I was born with it. These new guidelines won't only affect me. I think we are all going to be affected by these guidelines one day as Lyme has become epidemic, though there seems to be some sort of political hush-hush about it.
There is an overall lack of awareness about this disease, and it's almost scary. 'Science' teaches the doctors who diagnose Lyme that the bull's eyes rash is present in most cases, whereas, this isn't the case at all. Few of us ever remember such a classic bull's eye rash. In fact, the very antibiotics used to treat my 'acne' are the very ones used to treat Lyme and coinfections. Perhaps this is coincidental, but I don't know. 'Science' teaches our doctors that the only vector of Lyme is the deer tick, when in fact anyone bitten by a flea, housefly, or even a mosquito is at risk. There are many vectors of Lyme. The tick is just one of them. 'Science' uses a test which has been proven to miss over half of known positives as a diagnostic tool, yet 'science' doesn't realize that a person's life may actually teeter on the accuracy of such a test. Finally, 'science' denies a chronic form of Lyme and assumes any symptoms remaining after only 3-4 weeks of antibiotic therapy is 'damage' from the Lyme and not necessarily a persistent infection, even with so many accounts of improvement with continuation of antibiotics well beyond the 3-4 week protocol.
What concerns me is 'science' is ignoring the only evidence they need. People continue to improve when they are permitted to continue with antibiotic therapy. To deny people this treatment is cruel, especially when treatment is allowed for other disorders such as depression and MS with no 'scientific proof' that they exist. Lyme should be 'clinically diagnosed' just as these are, and those who suffer from the chronic form of this disease are nothing less than terrified as to how this disease is being policed by the CDC and the insurance industry.
It took me 41 years to get a diagnosis. I am horrified to now have a diagnosis, only to find the medical community is still arguing as to whether or not it exists and who is going to pay for it. And this is America? Even my eyes are affected by this disease, and because there is so much misinformation, I've become yet another number to be included on the list of Chronic Lyme sufferers. Please continue to spread the reality of this disease to yet another community at risk, because none of us are safe and lives depend on it. Lyme is a modern day plague.
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