-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Please be careful of what you say on this subject. Use links, and keep more private discussion you might now about the topic off the board. Thanks.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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2roads
Frequent Contributor (1K+ posts)
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posted
Six,
If it's too revealing then close it out.
I just wanted to disseminate helpful info to myself and others.
Thanks for the reminder. Please do as is needed-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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quote:Originally posted by triathletelymie: Which Dr. J?
FACT- the Dr. J in the article TinCup posted in medical in the thread: "Dr. J Facing Criticism for Treatment of Chronic Lyme "
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
2Roads, it's fine, I just didn't want people to start discussing things that might be helpful to those trying to get him out of medical practice. Just thought it'd be easier to say something at the beginning to prevent any problems then wait for something inappropriate to be said.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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t9im
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posted
State accepted monitor at todays hearing. Will peer review Dr. J work monthly and a report is to be prepared / submitted to the board.
Met Dr. J's attorney and the Hartford Courant and New Haven Advocate reporters.
So from the children's perspective Dr. J is still in practice.
Tincup
Honored Contributor (10K+ posts)
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posted
And yes, Goofy is right. We really need to be careful to not do or say anything that could harm Dr. J in the process of informing folks in updates.
Doing so would not only affect him, it would be bad for the kids.
So when we make updates and reports, please note they are covering the main points as best we can given the circumstances.
Aside from the IDSA supporters- you won't believe how many come here to read what we are saying...
Unfortunately, we have some very ugly people in the Lyme community that don't seem to have anything positive to say about anyone, and who don't DO anything productive to help in the efforts ...
They just wait for information to be posted for the sole purpose of whining and &*^^$$^& and trashing Dr. J and the volunteer efforts to help him and his kids.
2roads
Frequent Contributor (1K+ posts)
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posted
THANKS SO MUCH TINCUP FOR YOUR HELP IN ALL OF THIS.
I don't think you have young ones under his care, and you really are pushing hard for those of us that do. Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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blinkie
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posted
well, when this "monitor" sees Dr J prescribing loads of abx to kids, he'll reflect that in the report and I'm sure the putcome of that won't be good either.
Posts: 1104 | From N.California | Registered: Jan 2008
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blinkie
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posted
well, when this "monitor" sees Dr J prescribing loads of abx to kids, he'll reflect that in the report and I'm sure the outcome of that won't be good either.
Posts: 1104 | From N.California | Registered: Jan 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
2roads, you are right.
Fortunately, I've not had my own kids in his care, but I've send thousands to him over the past 20 plus years and all of them got help ... and all of them are better for knowing him. He works miracles.. he really does.
And even though my kids haven't been there ... aren't they all "our kids"? Kids are kids.. gotta love them all. None of them should suffer if we can help it, especially at the hands of the IDSA. Ever.
I am happy to know that mothers and fathers may rest a bit easier knowing their kids got the best help the Lyme community can provide. I am glad YOU are happy. I smile for that.
posted
thanks TC
Posts: 758 | From now TX | Registered: Mar 2001
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2roads
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Member # 4409
posted
Tincup, hugs.
I am HAPPY because of the relief you, and others like you, afford me through your hard and committed efforts. Thank you for caring for me and those like me. My son is a part of me.
In the face of something so sad, you bring a ray of sunshine and hope. Hope for the care our children must have not only to succeed, but to survive.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Tincup
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posted
Quick note before another storm hits. You all are welcome. It is team work that keeps us going. I will pass on your kind words to those working to help others. Like I do, I am sure they will appreciate it.
The state medical board on Tuesday withdrew plans to consider additional sanctions against a New Haven pediatrician known for supporting a controversial Lyme disease treatment.
In March, the Connecticut Medical Examining Board ordered Dr. Charles Ray Jones to find a physician to monitor his practice, part of a disciplinary order that also included placing his license on probation for four years and a $10,000 fine. The order gave Jones 30 days to find a monitor, but as of last month, he had not found one. In response, medical board members raised the possibility of imposing additional penalties and scheduled a hearing on the matter.
But the board withdrew plans for the hearing Tuesday after learning that Jones had found a monitor. Dr. Robert Elisofon, a retired pediatrician, will review 12 of Jones' patient charts each month. Jones found him with the help of a company that identifies monitors.
Jones' attorneys told the board last month of the difficulty of finding a doctor to monitor Jones' practice, which they attributed to the publicity his case has generated and the busy practices pediatricians tend to have.
They said Jones' office manager had faxed a letter to 209 Connecticut pediatricians, none of whom responded.
At the time, an attorney for the state Department of Public Health questioned the quality of the search.
Jones' discipline stems from charges that he violated medical standards in cases involving three children. A board panel ruled that Jones failed to consider other diagnoses when he ordered tests to confirm Lyme disease in two children without examining them and prescribed antibiotics to another child before examining her.
Jones has said he did nothing wrong and has appealed. The license probation has been stayed until after the appeal.
Jones' supporters, who include the families of patients and Lyme disease advocates, say he has been targeted because of how he treats Lyme disease.
Jones and his supporters believe Lyme disease can be a chronic condition that requires extended treatment with antibiotics. The mainstream medical community has largely rejected that view and considers chronic cases rare.
In disciplining Jones in March, members of the medical board said they did not consider the debate over chronic Lyme disease, but found that Jones violated standards that applied to all doctors.
posted
I truly appreciate the amazing strength that is on this board. A year ago this month, I became so sick I could barely get out of bed. Now,I am fighting tooth and nail to find and receive the treatment that will be enough to really kill this infection. While I hate that I am going through the double whammy of both being ill AND having to fight just to get the meds that will work, I don't think about it in those terms that much... I accept what is, and use my outrage and anger to fuel my fight to save my life and in turn, help others on the way. "Never doubt that a small group of citizens can change the world.. indeed, it's the only thing that ever has" ?margret meed?
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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posted
So the latest fact is that Dr. J may continue to practice because he is compliant with the Board's ultimatum ,thanks to an outside company that found a monitor for him.
"But the board withdrew plans for the hearing Tuesday after learning that Jones had found a monitor. Dr. Robert Elisofon, a retired pediatrician, will review 12 of Jones' patient charts each month. Jones found him with the help of a company that identifies monitors."
Posts: 365 | From Sylvania | Registered: Aug 2008
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2roads
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posted
Tincup,
Do we know when the Monitor is scheduled to begin his review. I mean, is it in a few days, weeks, or months? Not a specific day, obviously. Like, does it begin next month or ASAP?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey 2..
I do not believe there has been a date specified yet (at least as of yesterday).
I do know, if this will help...
Dr. J will first have to meet with the monitor and approve him before the monthly reviews start. He is having to pay for the services and in my opinion should have the ability to approve (or not approve) of this person.
Background- The Medical Board rejected the first monitor that was chosen- a highly qualified doctor ... and did it at the last minute with little time left to make other arrangements... and a deadline approaching.
Seemed like a set up to me... to make him not be able to meet the requirements they set down, or make it nearly impossible... but that is my opinion.
Anyhow, when we learned that the monitor was not accepted at the last minute, concerned folks jumped in to try to help so Dr. J's doors would remain open for the kids.
Volunteers, including several members from LymeNet and a number of support group members, and his staff made hundreds of personal contacts (phone calls, faxes, etc) to find monitors that would be suitable to satisfy the Board's idiot requirements.
While that was going on...
The company that was recommended by the Medical Board/Department of Health .. uggggg on that... was hired so he could at least get the name of someone to submit by the deadline. They could hardly reject a name from a company they wanted him to contact.
And that way he could meet his obligation and dead-line and not be further sanctioned by the toads. I almost could feel the toads drooling at that point... thinking they could nail him again.
But, the search that we did for a monitor was successful and we may see some changes to this situation? (I am guessing here.)
I can't believe even some Yale docs were concerned about the situation, as were others, and some even offered to help Dr. J.
From the responses we got, me tinks the IDSA ship just sank another few fathoms in that deep dark ocean.
I guess the Medical Board shouldn't have made such a big deal of the fact that the first time around not "all" doctors were contacted and no follow ups were done.
Without that comment from them we wouldn't have jumped in gear, made the personal contacts and learned how many docs are actually supporting him!
Of course there were a few pigs in the barrel, and from what I've watched over the years, the biggest pigs are the ones who had sick patients that Dr. J made better when they came to him.
The pigs barked at some of us and some were jack@@@@, but then THEY are the ones getting a bad reputation by listening to the IDSA and are now paying for it.
But the ratio of those wanting to help, compared to the jack@@@@@ was WAY in our favor.
Approximately, 10 or more wanting to help for each jack@@@.
I had to laugh too. When speaking with some of the offices I was on my best behavior. Yes, I really was.
It was the offices contacted that started ranting about the medical board and health department and their views on Lyme and the awful things they are doing to Dr. J.
I kept my big mouth shut for a change, but it was nice to hear the support from doctors offices across the state and how we aren't the only ones thinking he is getting a raw deal.
Nice to know that not only are patients jumping in to help, but health care professionals are jumping on our bandwagon in much larger numbers than I could have imagined.
posted
Hahaha....the monitor was my pediatrician. The irony. A great children's doctor and a kind man.
The practice for which he worked does have a one and done Doxycycline approach to Lyme, as far as I can tell. Needless to say they weren't much help in my greatest illness since birth - a real tragedy given the epidemic that's going on here in SW CT. This is where the IDSA is actively screwing Lyme patients - a better protocol and I'd probably be fine right now.
I hope his perspective on Lyme is informed by his proximity to the epidemic and the cases he's seen over the years. He retired before I fell ill, so I really have no idea what his approach will be.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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t9im
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posted
Tincup:
My understanding of the hearing is Dr. J approved.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
It's my understanding that it is not how Dr. J treats Lyme Disease, but that he not treat without seeing the patient first, nor prescribe over the phone. This was the original complaint filed by the first parent.
The fact that Dr. J treats long term is not the issue. In essence- as long as all his t's are crossed and paperwork is in order he will do fine.
quote:Originally posted by stork: Hahaha....the monitor was my pediatrician. The irony. A great children's doctor and a kind man.
The practice for which he worked does have a one and done Doxycycline approach to Lyme, as far as I can tell. Needless to say they weren't much help in my greatest illness since birth - a real tragedy given the epidemic that's going on here in SW CT. This is where the IDSA is actively screwing Lyme patients - a better protocol and I'd probably be fine right now.
I hope his perspective on Lyme is informed by his proximity to the epidemic and the cases he's seen over the years. He retired before I fell ill, so I really have no idea what his approach will be.
This is how the whole ordeal began:
"As most of you are probably aware, Dr. J has been charged with unprofessional conduct by the Connecticut state medical board, and a hearing has been set for January 26th. The charges were initiated by an estranged spouse in a custody dispute."
from a defense fund appeal.Dec. 2005
[ 07-21-2010, 08:34 PM: Message edited by: JR ]
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Tin Cup "Background- The Medical Board rejected the first monitor that was chosen- a highly qualified doctor ... and did it at the last minute with little time left to make other arrangements... and a deadline approaching."
Feels like the news articles need to get their facts straight , too. In the article posted, and now removed(?), it said that it was Dr. J's defense that did not approve of the company monitor. Wonder if this Monitor is the same one?
Posts: 365 | From Sylvania | Registered: Aug 2008
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quote: Nice to know that not only are patients jumping in to help, but health care professionals are jumping on our bandwagon in much larger numbers than I could have imagined.
That's wonderful news...so glad so many people, and doctors came to his defense. It must have been heartwarming to hear those comments made by other professionals - what an unexpected surprise!
Stork wrote:
quote:Hahaha....the monitor was my pediatrician. The irony. A great children's doctor and a kind man.
That's reassuring; I'm sure he'll see the good in Dr. J. At least the cards are now stacked in his favor.
Posts: 964 | From san diego | Registered: Oct 2009
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2roads
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posted
Thanks for the update Tincup.
Good to know some old faces are coming around in the medical community.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Tincup I now realize what you've been doing.
Thank you so much for advocating on behalf of our sick kids. Parents like me are so overwhelmed and busy with trying to get kids back to good health. It is hard to find time and energy to advocate for others, but l do feel compelled to do so. It's the right thing to do. I haven't done anything big-scale, but I do what I can when I can.
Thank you so much. You are a kind soul.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Nice to hear other doctors are in support of Dr J. He's been doing the nation and world a huge service and it's about time he was appreciated for his service, including by his peers.
And Ms TC, thanks for being a driving force!
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
T9 and stork- Great! Good to know!
Nspike and 2roads... I agree!
Oh Suzanna, it was a team effort. I wish we could do more to help parents deal with the garbage that the IDSA tosses our way, but it is good to know it may help parents and allow them more "kid" time and hopefully, less worry! Thanks!
JR - First of all you said.. "It's my understanding that it is not how Dr. J treats Lyme Disease, but that he not treat without seeing the patient first, nor prescribe over the phone.... The fact that Dr. J treats long term is not the issue. In essence- as long as all his t's are crossed and paperwork is in order he will do fine."
Not true actually. ANY problems that are noted, at the whim of any monitor, can be reported... Lyme related or not. Even the reporter got it right. ... "If the monitor disagrees with anything in Jones' file, he or she is to report it to the state."
You also said.. "Feels like the news articles need to get their facts straight , too. In the article posted, and now removed(?), it said that it was Dr. J's defense that did not approve of the company monitor. Wonder if this Monitor is the same one?"
First of all, where did the article say Dr. J's defense did not approve of the monitor?
Unless I am missing something, the article you are speaking about said.. "The company, however, would not tell Jones who the monitor would be and wanted him to sign a contract that Attorney Pollack found troublesome."
Second.... please try get the facts straight. Not doing so is upsetting to parents and others as they have already told you.
One monitor was originally assigned to do the job (Golenback). He found "problems" with Dr. J's charts and reported them.
Another monitor was then chosen to satisfy the Board's latest requirements (12 charts a month for 4 years). THAT monitor was not accepted by the Board just a short while ago. (Not publicized.)
The one chosen for now (since the one Dr. J located was rejected), see link below, was from the company that was recommended by the health department.
posted
It's a fact that Dr. J is not on trial for treating Lyme Disease.
It is also a fact that the monitor is auditing for breaches in standard of care-and yes- if he finds something wrong in the standard of care than he is to report it.
It is also a fact that this is not Dr. J vs IDSA. The IDSA did not bring these charges against Dr. J- A PARENT did !
And that is the most upsetting fact of all.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Dr. J is on trial for treating lyme disease longterm, regardless of what is said by the board. Anyone who doubts this is ignorant.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou, you are right. Your succinct statement says it all. I'm not succinct, so I have more to say about this.
JR, your gig here on lymenet just doesn't ring true to me. You jump right in on any thread that involves this doc. This is a bit unusual, given that you've stated that you have a child who became ill beyond the pediatric years.
And, I'm no psychologist but when I called you out on another thread your reaction was not one that would be expected from a parent of a sick kid. Just saying.
BTW, it's a fact that other docs in CT, including one who impregnated one of his patients (!) have gotten a slap on the wrist. Doc J has been persecuted above and beyond any other doc in CT and if you read the factual information you would surely know this. He most certainly IS being sanctioned because of his knowledge and willingness to treat Lyme Disease long-term. Like Lou said, anyone who doubts this is ignorant.
Yes JR, it was a parent who initiated this. You do realize that this parent was a father involved in a custody case and had a beef to pick with the mother of his children right? The kids ultimately did get better, thanks to Doc J.
Oh, and it's also a fact that Zemel is a card-carrying member of IDSA.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Oh JR, I thought it was a parent who was trying to win a custody dispute, one who wanted to discredit the medical treatment his ex chose for the kids, treatment that improved the kids health in the long-run. That you missed mentioning this is to me the most upsetting fact of all. Give it up, would you! Posts: 758 | From now TX | Registered: Mar 2001
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-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
JR said..
"It's a fact that Dr. J is not on trial for treating Lyme Disease."
quote:Originally posted by lou: Dr. J is on trial for treating lyme disease longterm, regardless of what is said by the board. Anyone who doubts this is ignorant.
amen
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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you are weighing in on a topic with a rather innocent and naive viewpoint. I would have shared your sentiments prior to witnessing my own state medical board's attempts to systematically target doctors willing to recognize and treat Lyme disease in a manner that "deviates from standard care" as defined by the insurance companies with support of the IDSA.
If you are a Lyme patient seeking treatment, I hope your own case will be easy to manage and that your insurance company will not require you see their own approved expert to disprove your diagnosis and deny you treatment. Likewise, I hope your own medical board will not permit big billion dollar insurance companies in your state to file anonymous complaints against your doctor resulting in your medical board initiating an investigation into the care you receive. If and when that happens, your own state medical board will comb through your doctor's records until they find something (anything) they can get him on. Even if it is a simple clerical error that will result in trumped up fines and penalties designed to deter him from remaining in practice.
The sooner your recognize that these trumped up charges are the direct result of an environment where the AMA and state medical boards have come to exist as pawns for large insurance companies to deny claims, as well as being used as pawns by physicians groups such as the IDSA to deny competition in the market place, the better off you'll be. If you doubt medical boards trump up charges in instances where chronic Lyme is being treated, then please do feel free to compare those sanctions and their disciplining of Lyme doctors directly with the medical board's sanctions and disciplinary measures of other medical professionals in the same geographical area who are charged with similar and even more serious counts of medical malpractice. If that doesn't open your eyes to the political climate, then nothing will.
While you're arguing that Dr. J did indeed make a mistake in judgment. You seem unwilling to recognize that his two minor mistakes out of decades of treating countless Lyme patients resulted in nobody being harmed and those patients actually responding to and improving with his course of treatment. Something a medical board would likely recognize in any other situation where they are not clearly' being used as hired guns by an insurance company and the IDSA. You seem very intent on choosing to ignore the fact that he, like so many others, has been targeted because of the political climate where the insurance companies and the medical board would like to deny you your ability to participate in a free market and have any say in your own health care because; although your disease is treatable, the treatment is expensive.
I feel extremely blessed that I received excellent care for my own Chronic Lyme when treatment in my area wasn't nearly as politicized. My own treatment was lengthy, unpleasant and would never have been approved in the current political climate when doctors are being targeted in an effort to discourage the lengthy treatment for Chronic Lyme disease. Thanks to my own doctors' willingness to risk their licenses to think outside the box and go against the mainstream, I'm well today and have been medication free for years with no sign of relapse. I am sure they were willing to go the extra mile because I was no longer able to be insured and had to pay privately for care, permitting me the freedom to get well.
Like most of Dr. J's patients, I improved and have gone on to resume a normal medication-free life. Sadly the result of the Connecticut State Medical Board's actions is that future pediatric patients with Lyme disease will be denied treatment. The outrageous and expensive sanctions placed on a good and decent physician's license compared to those placed on other physicians responsible for real malpractice sends a loud and clear message to all other doctors that they cannot afford to risk their own livelihoods treating a disease that will result in a big red Bull's-Eye target being painted on their backs.
I've probably wasted my breath trying explain something that should be pretty obvious you if you're willing to open your eyes and compare the sanctions Dr. J received to those other doctors receive for far more serious errors resulting in patients actually being harmed.
If anybody has read this far, this recovered patient would like to thank the Dr. J's out there and all of the activists who work tirelessly to insure others will be able to receive treatment for Chronic Lyme! You are most appreciated!
Robin123, thank you for directing JR and everyone to Kris Newby's blog comparing the disciplinary actions of Dr. Jones with those of other physicians.
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