By WILLIAM HATHAWAY | Courant Staff Writer 7:41 PM EST, November 29, 2007
In a decision with national implications for how suspected cases of Lyme Disease are treated, a state physician review panel is recommending that controversial pediatrician Charles Ray Jones be reprimanded and put on two years' probation for his diagnosis and treatment of two Nevada children.
If the panel's recommendation is upheld next month, the New Haven area pediatrician -- who gained support across the nation because of his willingness to ignore consensus treatment guidelines and prescribe long-term antibiotics to children suffering symptoms of Lyme -- would also have to pay a $10,000 fine and pay a doctor to review records of his patients.
The decision, in criticizing Jones, could have broad implications. It calls into question the medical validity of treating patients who show symptoms of Lyme Disease -- such as aching joints and fatigue -- but don't meet the criteria established by mainstream doctors.
Proposed Memorandum Of Decision Lyme Disease Links Lyme Disease Rates For 2006 Multimedia Advocates for patients who say they have chronic Lyme Disease argue those criteria are too narrow and lead to needless suffering.
But the panel from the Connecticut Medical Examining Board upheld most, though not all, of the state health department's allegations about Jones' diagnosis and treatment of two Nevada children in 2004 and 2005, which came into question during a bitter custody dispute.
Jones prescribed antibiotics to the son of Jeffrey and Robin Sparks and told the boy's school principal that he had diagnosed late-stage Lyme Disease without ever having seen the boy, the panel found.
Jones also prescribed antibiotics to the Sparks' daughter before examining her.
When Jones finally did see the Sparks' children, he persisted in his diagnosis of Lyme Disease for children without compelling medical evidence to support his diagnosis, the three-member panel found.
"The respondent diagnosed a disease when the exposure risk was extremely low, medical history was non-specific, the signs and symptoms were non-specific, and the laboratory tests were negative,'' the panel found.
Jones defended his actions, saying he has successfully treated thousands of patients suffering from Lyme Disease.
The panel's finding, which will be reviewed next month by the full board, goes to the heart of bitter feud over Lyme Disease.
The majority of medical experts say there is little evidence to support the idea that Lyme Disease, if treated properly, will nonetheless continue to cause ongoing symptoms, a view that has been bolstered by the treatment guidelines issued by two medical associations for the disease.
There is no good evidence, these doctors say, that extended courses of antibiotics have long-term benefits for patients suffering from Lyme-like symptoms. And symptoms experienced by these patients are more likely attributable to causes other than a lingering infection from the tick-borne pathogen.
But advocates for Lyme patients insist there is abundant evidence that the bacterium which causes Lyme can persist for years, even after initial antibiotic treatment and often eludes detection by existing tests. They believe that thousands suffer needlessly because their doctors do not recognize clinical signs of Lyme and refuse to prescribe long courses of antibiotics. Members of the so-called long-term Lyme camp crowded Jones' hearings, which lasted more than a year, in support of the doctor. They raised money to aid in his defense.
"Dr. Jones is being charged with improperly diagnosing and treating Lyme Disease after having treated and cured two children whose health was of great concern to their mother for years,'' said Jones' attorney, Elliot Pollack. "Instead of being sanctioned, he should be complimented.''
Jones treated three of Maggie Shaw's children for Lyme Disease and all got better, the Newtown mother said.
"My concern is not only for my kids, but how will this effect treatment for all children,'' Shaw said.On the other side of the divide, the decision was well-received by the doctors who argue that treating patients with Lyme-like symptoms with long-term antibiotics is not only misguided, but can lead to a failure to properly diagnose other ailments in those patients.
"This decision sends a message to very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme Disease,'' said Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical Center and professor of medicine at the University of Connecticut School of Medicine.
That view was bolstered by a recent review in the New England Journal of Medicine.
In addition to the fines and probation, the panel is recommending Jones hire a doctor to review his treatment regimens quarterly while he is on probation. Future misconduct could lead to a suspension of his license.
The full board is scheduled to review the findings on Dec. 18. They can confirm, reject or modify the findings of the panel.
[ 30. November 2007, 12:29 AM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Although I don't post as often as before, here is my ``inspiring story''......
6 years a go I was a ``newbie''; I didn't know what this disease truly meant. Today, I'm 100% sx free; even my residual sx went away. God only knows for how long, but for now I'm feeling mostly sx free. This is more than enough compared to my first years not only suffering the horrible and indescribable symptoms but to find friends who talked the same ``language''.
I just want, with a few words, to let you know what kept me battling this disease even though I was getting, at some point, sicker and sicker. You know even after years of abx you might go down the hill if co-infections have not been treated.
The first LLMD I met was Dr. J, New Haven ,CT.
As some of you know, I got bitten at a state park in FL along with my 2 daughters in May 2000. To make the story short, I was misdiagnosed by an ID; I didn't have the rash, FL is not endemic, my bloodwork was negative, my ``subjective sx'' were anxiety: the perfect recipe for disaster, or maybe a wheel chair. Who knows ?
At least I had the privilege of clearly recalling tick bites.
But, since things happen for a reason and I really find this one complicated to believe; since my daughters were infected, too, I ended up meeting with Dr. J in his office. He is our ``Angel''.
While I was treated by a NON LLMD DR, due to the fact that I didn't have enough money at the time, my daughters had the privilege to see the best LLMD in the world for children.
He treated them and both went into remission after abx treatment for 9 months. On the other hand, I was sicker even though I was on abx (wrong dosage, wrong abx, etc). Dr. J said several times that Lyme should be treated until sx disappear.
A couple of years later, in 2002, I was prescribed other abx `s some old sx disappeared other new ones appeared It seemed like the never ending story, but by repeating Dr. J's words in my head, `` Until sx disappear.'', motivated me to move mountains, to question my whole family, to stop visiting some friends and relatives and to build other relationships, to find the money to see an LLMD and definitely educating my self on medical studies, other lymies experiences , and above all listening to my body.
I had the privilege to be one of many patients that Dr. B, East Hamptons, NY treated. He addressed my bart and babs and other issues like H pillory, etc... At this point, not only the improvement was enormous, but Dr. J's words were proving to be true. ``Until symptoms disappear.''.
Later on Dr. B retired and although I was almost symptom free, regarding my health, I knew the job was not complete. One more time the ``enormous'' privilege or the ``miraculous opportunity'' to go to another great LLMD. Dr. H, NY.....after some months under his care he told me `` no more abx.'' and I've been abx free since then;only Cowden's+ supplements.
As you see Dr. J made, not only me, but my loyal husband also to believe and pursue what once I thought was impossible. Not only that I was going to be at a stable health level, but to believe in myself, too.
Now : WITH TEARS STREAMING DOWN MY FACE I'M MOVING MOUNTAINS FOR HIM PLEASE HELP DR JONES MY FAMILY AND MANY OTHERS ARE FUNCTIONAL BECAUSE OF HIM THERE ARE MANY MORE KIDS WHO NEED HIM.
P.S Wanted to add, too, that after more than 4 years abx and sx free my youngest relapsed or got re-infected. Of course, none of her local doctors knew she was relapsing or suffering of lyme disease. I was suspecting she was, but was not sure and having lyme myself I was tagged ``obsessed with lyme'' when she landed twice with cardiac involvement in the ER. One more time the only person who really helped was Dr. J and that's another story.
Posts: 983 | From The sky | Registered: Feb 2005
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Beverly
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How can they completely IGNORE that the children they are talking about got BETTER..it's INSANE!!! Talk about being biased.... I wonder what the AG will say about this..it's so completely biased.
This makes me so angry!!!
Dr. Jones is a living Saint and he deserves a Metal of Honor.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Lymeblue, your story is very compelling. Maybe more of Dr J's patients can write in to the Courant and post comments about their life-saving experiences with Dr J.
This Connecticut Medical Examining Board panel, who are they? I'd love to see their number posted here, so we can call them, like we've done on behalf of other LLMDs who've been harassed.
Posts: 13116 | From San Francisco | Registered: May 2006
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they probably have the doctor who will do the reviews all lined up as well.... one who's higher power is the almighty insurance company's.
so sad.
God bless the children with lyme. I hear pediatric llmd's are hard to find.
dr J gives sick kids the chance to get well and enjoy their childhood. no kid should suffer 1 second longer than neccessary.
they grow up way to fast. they should get the treatment they NEED!!!!!
these people trying to stop dr j should be ashamed. I'm sure they would think differently if their own child was afflicted.
Posts: 36 | From woburn,ma | Registered: Nov 2007
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heiwalove
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posted
well, the words i have in response to this news are not allowed on this board.
i was fortunate enough to be able to attend one of dr. j's hearings in hartford in april; when i met him and thanked him for everything he does for lymed kids, it was almost impossible to keep the tears from streaming down my face. he gave me a hug, looked deep in my eyes and asked about my story, how i was feeling, etc. he is truly a saint and one of my biggest heros.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Every day I wake up with an 18 year old son who may have had a childhood, some normal teenage years, if Dr. Z hadn't dismissed the idea of "chronic lyme" based on the fact that his spinal tap only revealed one band. He had all the clinical symptoms, and had a bullseye rash and positive testing about a year earlier, but never bounced back to good health.
Now four years later we are fighting for treatment for him and plan to get him to Dr. J. As I said in my commment, I believe Dr. Z robbed my son of his childhood.
And one day soon, I am going to schedule a "follow up" appt with him with the SOLE purpose of showing him what he did to my child.
He might be able to ignore a letter, but let's see how he reacts to a reasonable yet irate mother armed with data and facts who confronts him with the irrperable damage he has caused my son. Ryan can NEVER get these years back. And Dr. Zemel ain't gonna know what's hit him!!!!!!!
Why isn't HE being examined by the board? Maybe I need to be the first one to file a complaint against him.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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CaliforniaLyme
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posted
My angle LLMD treated my daughter but every decision he ran through Doc J- and I credit Doc J with saving my daughter from a childhood of unrelenting pain. He is an angel on earth-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AliG
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Member # 9734
posted
I just have to say that these assaults on LLMDs really sicken me.
Here's what I don't really understand. If someone is ill & an educated, licensed physician treats their illness using whatever means they see fit based on ther clinical experience, why are they persecuted for healing people just because they think "outside the box"?
What IS IDSA'a problem? They fear that it is not Lyme, but something else instead? Who the heck cares what you call it, as long as people who are receiving treatment are getting well? I say go with what works.
Why don't doctors come up with a new name for this disease, when it doesn't conform to IDSA's pretty little picture. Then, depending on the CDC test results, you either have Lyme or "Whatyamacallit Disease". If IDSA's treatment fails, you must have been contracted "Watyamacallit" too. That's OK because WLMDs can help you get rid of it!
Since a Dr. versed in "Whatyamacallit" can also treat Lyme, I'd recommend going to them first.
If IDSA is taking the position of "it must be something else, since your treatment works & ours doesn't", they should be trying to figure out what it is and establish a credible identity for it. IMO, it can not be just a "syndrome" and not caused by an infectious agent if antibiotics can put a person into long-term remission, but then again I'm NOT an IDSA doctor so what would I know???
I'd just love to invite these clowns over for a nature hike and see how many show up without tick protection. After all, this IS an easily identified, easy to treat infection, right? I'm sure they wouldn't fall pray to the multi-system hypochriacal syndrome that follows. At least if they did, we'd have more doctors joining ILADS.
They're JERKS!!!! Those leaders of the Infectious Drivel Spewing Association make me positively nauseous with the suffering they cause & perpetuate!!!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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First and foremost I totally agree with everything people have written. This is a sad, sad day that Dr. J wasn't totally acquitted.
I've been following the case closely, have discussed it with my LLMD, and attended one of Dr. J's hearings.
That being said, the pessimistic, scared side of me thought the worst and that Dr. J would totally lose his license.
He made a mistake when he prescribed meds before seeing the children.
The recommendations of the panel are to give him a fine ($10,000) that is paltry compared to the amt CT and Dr. J had paid in legal fees. Seems like a slap in the wrist. Is having an MD oversee charts a slap too? That I know nothing about.
What I'm mostly scared about is the other 4 charges... Don't know anything about those... $%#$!!!
OK Now you can lambaste me for my possible optimism in a time like this.
I really feel like with all the chicanery and B.S. that went on during these hearings that the CT board had to do something (however minor) to reprimand Dr. J.
Humbly, Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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lymednva
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posted
In my opinion it's the PANEL who needs to be reprimanded!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
If this order is confirmed as is a "monitor" will look at 30 patient files every 90 days. As I would not want my child's patient file to be looked at in this way, I will assert my right of consent and not allow to such disclosure. It will have to be done in writing to have effect.
Posts: 12 | From Weston CT | Registered: Jan 2006
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sizzled
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posted
The Department of Health and the Medical Board should be investigated.
Posts: 4258 | From over there | Registered: Jul 2001
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lymeladyinNY
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Member # 10235
posted
"The respondent diagnosed a disease when...the laboratory tests were negative."
Duh!! How many times have we got to tell these jerks that the lab tests aren't ACCURATE!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Greatcod
Unregistered
posted
Its not about Dr. Jones, its's about Lyme politics.
"This decision sends a message to very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme Disease,'' said Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical Center and professor of medicine at the University of Connecticut School of Medicine.
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oxygenbabe
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posted
I'm sorry but, as good as Dr J is, and as dedicated, he should never have prescribed medicine to children he had not seen in person.
That is not safe practice of medicine.
I don't know why he did it. I'm glad he will be able to continue to practice.
Posts: 2276 | From united states | Registered: Jun 2004
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tdtid
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posted
Total insanity. Makes you want to cry. Thanks for posting.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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luvs2ride
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Member # 8090
posted
I agree, agree, agree.
1-The LLMDs need to be very very careful in how they treat.
2-I,too, am planning to confront my duck rheumy one day. I already have all the evidence, tests, results, etc but am still waiting for me to calm down enough to do it without looking like a raging idiot.
3-The drs I work with do not say Lyme. They focus on and talk about the things I am test positive for. This is so much so, I actually asked my LLMD "Do I have Lyme?" She looked at me like I was nuts and said "Of course". She doesn't talk about it in the records though although she does pull a lyme test along with many others about once a month. I think this is very smart tactic to protect her butt and keep her in practice.
All 3 drs I have worked with always use the R.A. label to work under. It is safe to treat.
4-There must be some forum, some body of government where we can present our test positive evidence and our treatment positive results (I'm speaking of those of us who have positive tests and positive treatment results). They would not be able to just continue ignoring clear results.
5-Yes! Why aren't doctors like my Internist pulled before the board? I went to him 48hrs after the recent tickbite. I presented with 101 fever and his bloodtest showed elevated white blood cells. I had the tick. Still, he did not run a lyme test and refused to test the tick. I requested 2 weeks doxy which he complied but he said "I was scary". Hhmph! I think he is scary!
And why aren't doctors like my rheumatologist pulled before the board. When he diagnosed me in Jan 06 as having RA, I researched and learned about the infectious connection. I went to him armed with a medical history of infections including lyme, strep, H. Pylori. I REQUESTED tests for strep, H. Pylori, mycoplasmas, etc and he REFUSED! Why should he be allowed to refuse my request? This is MY BODY!
Now I have positive test results for H. Pylori, Babesia WA-1, EBV, QFever. Only (HA!) 3 bands positive for Lyme so that would not hold up in court.
Treating for the HP alone eliminated the last of my joint pains. Why can't I sue him for letting me suffer 1 1/2 yrs when treating HP would have gotten me symptom free?!!!!
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
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posted
Yeah, I know. I'm the one that has to initiate legal action.
Anyone got any extra funds? Can I start a Lyme Offense fund drive? LOL.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Re the decision Dr. J. made, I'd rather have a doctor who was more interested in following the spirit of the law than the letter of the law. Dr. J. put the needs of his patients first. Woe to us if that becomes impossible for a doctor to do.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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oxygenbabe
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Member # 5831
posted
Whatever you may "rather", to let a doctor diagnose and treat patients without an in office consult would lead to mayhem in the entire medical profession and much abuse.
I heard it is not the first time he did it.
For such a marvelous doctor he made some serious mistakes and its good the lyme community rallied to support him and the result is a relatively small fine.
He is apparently a great doctor but he should've known better.
The medical profession has rules and laws that's why there is malpractice. You are dealing with people's lives. You can't treat people in other states sight unseen. It's unethical, and besides, you could miss important diagnoses you'd make in person. No doctor is above the law.
Posts: 2276 | From united states | Registered: Jun 2004
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oxygenbabe
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posted
There are ways to be an LLMD and treat lyme patients for years, well and consistently, without getting into trouble.
The ones who get into trouble, there are reasons for it.
Those ones may be pioneers, saints and dedicated but they make mistakes and cause problems, too. It's not so black or white.
The stupid infectious disease doc I went to the first summer I had lyme, who said 2-3 weeks of doxy would be fine (and frankly, it HAS been fine, just fine, for a couple friends of mine with no problems even years later) told me how appalled he was at Dr. B (long island) treatment of a woman he saw. He said she was on IV rocephin for SEVEN years and had such a big fungal ball in her sinuses she had to have surgery to have it out.
A regular doc only has to see one case like that to form an opinion.
There were complaints about Dr. J in South Carolina, and what Dr. Jones did also was not kosher.
You don't treat patients out of state before you see them. You don't put people on IV abx for years. You have to be cautious. You need to document not just through western blots and PCRs but spect scans and other tests to give a picture.
You should start with orals unless a patient is severely neurologically ill.
If the OPMC starts going after Dr. L or Dr. F at Columbia then I'll change my tune.
As it is, I think all the above docs (not dr L or Dr F) deviated from good medical care at times and put their patients at risk, even as they saved many many lives.
And if you're going to deviate from standard of care (which is not necessarily good) you have to bend over backwards to document what you're doing, precisely for the reason that you're out there and putting your practice at risk by not following convention.
Posts: 2276 | From united states | Registered: Jun 2004
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bettyg
Unregistered
posted
yes, it is disgusting! look how much $$$ went out for dr. jones defense and still.
speaking of that, dr. jones had someone post how he needs more money for his $1,000 a DAY to pay for all these bills.
suggestions on this/other stuff: *******************************
1. for any of you who doesn't need gifts/money, how about sending some to dr. jones defense fund?
2. someone mentioned lawsuit above, go over to ACTIVISM and read the post there about a class action suit, and what ideas have been made!
3. HAVE YOUR SENATORS/HOUSE REPS IN DC "CO-SPONSORED" OUR LYME DISEASE BILLS IN CONGRESS?
HR 741 and S 1708 ******************
again, go to ACTIVISM AND CHECK IT OUT!
start emailing them, calling, or seeing them in person if they live nearby and HOME FOR THE HOLIDAYS!
LET'S GET BOTH BILLS SIGNED THIS YEAR AND PRES. GW BUSH SIGN OFF ON IT since he is not a lymie like the rest of us!
4. write your feedback stories to dr. jones and other things going on with lyme that we read about daily here! MAKE OUR VOICES KNOWN; WE ARE NOT GOING TO GIVE UP! THEY HAVE TO RECKON WITH US DAILY as we do all their BS!!
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quote:Originally posted by oxygenbabe: There are ways to be an LLMD and treat lyme patients for years, well and consistently, without getting into trouble.
The ones who get into trouble, there are reasons for it....
If the OPMC starts going after Dr. L or Dr. F at Columbia then I'll change my tune.
Sorry, but I think this is very, very wrong.
For starters, there are reports the OPMC did in fact try to go after Dr. L, until they were told to stop harassing Lyme doctors. I can't confirm it but it was discussed on the google group years ago.
Second, read the panel's recommendation. Apart from the issues of prescribing, one charge was based exclusively on diagnosing Lyme outside the CDC definition. (no CDC positive western blot, nonspecific symptoms) This charge was upheld! Medical negligence, for treating a patient who didn't meet CDC criteria!
We can debate whether either of the Dr. J's made mistakes, but there is no question in my mind that these charges were used for a larger purpose -- to set a precedent that there is only one standard of Lyme care.
It is a strategy. Find whatever mistakes you can (even if many doctors do the same things), and pair them with charges of overdiagnosing Lyme, which sets the precedent to end chronic Lyme care.
That's what Zemel's quote is about.
Remember what the CT health board said at first? They promised this case had nothing to do with Lyme! And then they get him on a charge of not following the IDSA standard of care!!
We need to wake up. EVERY LLMD IS AT RISK.
Posts: 621 | From US | Registered: Jun 2006
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Greatcod
Unregistered
posted
Exactly, Idfighter..again from the article
"This decision sends a message to very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme Disease,'' said Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical Center and professor of medicine at the University of Connecticut School of Medicine.
This was the medical lynching of a LLMD, period. Doctor's screw up with great regularity, failing to diagnose, diagnosing wrong--not just about Lyme--and rarely get called up by their medical boards. And I could be wrong, but I believe the mother was a nurse, and the telephone prescriptions were for conditions other than Lyme..Plus the husband apparently once bit the children in a fit of rage--making the absurdity of it all total.
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oxygenbabe
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posted
A doctor friend of mine in the loop told me it's not the first time Dr. Jones prescribed in this way.
I'm sorry but, he left himself open to attack by not following standard of care that way and the punishment is rather mild.
That's good. But the world is not divided into: 'LLMD good, other docs bad."
Posts: 2276 | From united states | Registered: Jun 2004
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posted
oxygenbabe, the prescribing issue you keep raising is a totally distinct charge. Each allegation was evaluated separately.
The following "violations" of "the standard of care" are about one thing: diagnosing Lyme outside IDSA guidelines:
"With regard to the allegation contained in paragraph 5e of the Charges, the Department sustained its burden of proof that [Dr. J] violated the standard of care by diagnosing a disease in a very low risk patient, with a non-specific history, non-specific signs and symptoms, and negative laboratory tests."
"With regard to the allegations contained in paragraph 5j of the Charges, the Department sustained its burden of proof. Respondent failed to reconsider his diagnosis of SS in light of the negative Western Blot tests obtained in April 2005."
Without referring to any other charges, can you tell me exactly why these findings of "violation" are not alarming?
Posts: 621 | From US | Registered: Jun 2006
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posted
Just a note to those who are talking about how he should not have prescribed without seeing the child. I sat in on the hearing whereby the mother testified and was amazed. SHe testified the boy's own school would no longer let him attend anymore because of the awful cough he had.
History had showed Zithromax helped the cough but then it always came back. His physician at the time would no longer give him the med at the medical center he went to. The mother who had been diagnosed with Lyme had sought out Dr. Jone's help in order to evaluate her son's puzzling realm of symptoms. Dr. Jones read the case by fax and then prescribed the Zithromax to my knowledge with the expectation hey were also flyign in for an appointment. So you see there were many areas covered before he just prescribed it. How many times have our regular doctors called something in for us?
The boy had showed improvement on Zithro in the past with other docs therefore Dr. J prescribed that until an appointment was met. After staying for that hearing I was appalled that the medical board would even consider going after Dr. J. I was also appalled at how unprepared their attorney was and how few questions he asked the mother. What a set up if I ever saw it!
In the end it is so sad this case is even being questioned since Dr. J helped heal this wonderful child and his sister for that matter and they are happy healthy kids in school now! Meanwhile there are hundreds of pediatricians missing Lyme diagnoses in young kids and propelling them into chronic disease later on in life!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Ann-OH
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Member # 2020
posted
I agree, Hides. I don't think Dr. J. did something so horrible.
I know of one of the docs who is part of the Steere clique who prescribed for someone on the phone without ever seeing the patient. Nobody went after him. And it was not a medication the person had ever taken before either. She got worse, by the way.
When you are pulled into the middle of a divorce, as in this case,no body plays fair, it seems to me.
I don't think Dr. J. deserves any of this. Hard to say what the full board will do. I just hope they aren't harder on him than the panel was. That can differ from board to board, I am sure.
oxygenbabe
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Member # 5831
posted
I don't mean to offend anybody but that's how I see it. You need to see the patient in person and do an actual consult. That is standard practice and *it* *should* *be*.
Posts: 2276 | From united states | Registered: Jun 2004
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shazdancer
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Member # 1436
posted
I'm not offended, oxygenbabe. Additional info in this case is that the mother for whose children he prescribed is an RN herself, and trained in identifying the ticks that bit them. If he had to prescribe before seeing them, he couldn't have picked a safer person to do it with.
I was expecting a slap on the wrist, but this sounds to me like it goes a bit beyond that.
--Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
shaz, i agree with your statement above,
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hearing the full explanation behind why Dr J prescribed medicine before examining the child does make it a little more understandable.
Still Oxy makes a very important point. Lyme doctors are under special scrutiny and must be very careful. Additionally, parents also need to be very careful. In this day and age, doctors and hospitals can report you to child welfare and if they think you are endangering the child by insisting on too much medication, you may have your child taken away. Even if both parents are in agreement about the need for treatment. In this case, it sounds like the husband was trying to prove the mother unfit so he could gain custody.
Someone asked how many times have doctors prescribed meds for us by phone. In my case, zero. And that is the doctors who already know me. I do not think this is a common practice.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
According to testimony, Eugene Shapiro diagnosed,"No Lyme", in children he NEVER SAW.
May I ask WHY this is acceptable????
By the way, these children were fortunate to go on to see Dr. J and receive tx...for which they got better.
Posts: 4258 | From over there | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Sizzled, I agree. Perhaps we should start reporting some of those ducks that diagnosed us without seeing us.
I had one. I needed to renew my script for doxy from my walk-in doc who had prescribed it. I got his colleague on the phone, who said I no longer had Lyme, I had rheumatoid arthritis. He'd never even met me, and I never so much as described my symptoms to him.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Shaz, that's medical neglect...or worse, malpractice.
People HAVE been reporting ducks to the medical boards.
And what becomes of them?
Posts: 4258 | From over there | Registered: Jul 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I remember a lawsuit that ruled in favor of a boy whose lyme went undiagnosed. This was in Pennsylvania a few years ago? I don't remember all the details.
Posts: 2276 | From united states | Registered: Jun 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
What about all these doctors on the Internet that diagnose and prescribe meds without ever seeing the patient???????
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Having neuro Lyme that is kicking my arse at the moment, a 5 year old with Lyme who is losing progress, a dying father, a husband at a breaking point with stress and what not, i simply can't follow all the ins and outs of this thread.
i seem to be hearing some say that dr jones made a mistake in how he treated those NV kids. Not, not, and NOT.
PLEASE don't comment here or any other place about the facts of the case unless and until you have bothered to read the whole story.
Dr Jones did NOTHING wrong! He is being persecuted BECAUSE he is so esteemed and competent. If he is taken down by whatever means- bankrupting him is the preferred means at present, just how many of our LLMD's do you think would be treating us the year after?
Dr Jones in his own right is deserving of every ounce of total support any and all of us can muster.
Beyond that, anyone who thinks this persecution of Dr. Jones is happening in isolation or is because of anything he has done is sadly missing the big picture.
Since i have understood the politics of this sh@#@#ty disease from the first, I have been fully supportive of DR Jones since the first time i visited a LLMD and read about him in leaflets my LLMD had in his waiting room.
Now that he is my son's treating doc and the only doctor on planet earth fully qualified to help my son, I am fiercely protective of this incredible man who understands COMPLETELY what this fight is about- and he isn't fighting it for his own well being.
I'm not here a lot right now, but i'm going to haunt this thread until i see that the folks posting here have done their homework.
end of lecture- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I agree Dilly!!!! Dr. J is a wonderful doctor. Standard of care??? There isn't a standard of care for lyme disease. Most in the medical profession run away from the increasingly growing epidemic because they are cowards or just plain ignorant.
Dr. J did nothing wrong. He is still trying to help sick children that the rest of the medical profession just give up on.
My daughter has been on IV rocephin for 3 months and it is working!!!!! She did orals for months, bicillin and orals for months and we didn't see much improvement. She can talk again and doesn't have to pause every 3 seconds to try to remember what she was going to say. She can spell words again!!!!
Please do not put down the one person in the medical profession that is trying to save her life. He should be applauded for helping those children from Nevada.
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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posted
I entirely agree w/ the majority of posters here: Dr. J is a hero for Lymies.
To Oxygen: The so-called "standard of care," against which any defendant doc's behavior is analyzed in medical malpractice cases, isn't a black-and-white inquiry. If only the world were that clear cut.
Rather, courts looks to whether or not a doctor's professional behavior was "reasonable" under the circumstances. A lot of factors can help courts determine what counts as "reasonable," e.g., what another/hypothetical "average" doctor would have done given the same set of facts. We do not ask our doctors to be perfect or faultless.
The problem in these cases, then, is how we define "reasonable" or "average" in light of the huge discrepancy b/w ILADS/IDSA professional standards.
Along with others here, I think it's clear that Dr. J acted reaonably under the circumstances, when all factors are taken into account: The boy came in soon after the script was called. He was very ill. His mother was nurse. Dr. J read the facts of the case via fax. When there are children involved, I think there is a stronger sense of urgency in getting immediate care.
I've had doctors (LLLMD's and non-LLMD's) call scripts in for me many times, if I have been too sick to come to the office immediately. If you took out the Lyme element in Dr. J's hearing, the medical board wouldn't have had a case.
What if Dr. J hadn't prescribed the Zithromax b/c the boy was not well enough to fly out at that moment? Many might argue that that omission itself is a crime.
IDSA is disgusting. Truly. This was a calculated and opportunistic attack on a leader in the Lyme community. They manipulated a bitter divorce to their advantage.
The precedential value of this case is extremely scary.
I am thankful we have a pretty good safe harbor for LLMD's here in Cali. I would hate to ever put my LLMD's at risk.
Posts: 390 | From Oakland, CA | Registered: May 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by ldfighter:
The following "violations" of "the standard of care" are about one thing: diagnosing Lyme outside IDSA guidelines:
"With regard to the allegation contained in paragraph 5e of the Charges, the Department sustained its burden of proof that [Dr. J] violated the standard of care by diagnosing a disease in a very low risk patient, with a non-specific history, non-specific signs and symptoms, and negative laboratory tests."
"With regard to the allegations contained in paragraph 5j of the Charges, the Department sustained its burden of proof. Respondent failed to reconsider his diagnosis of SS in light of the negative Western Blot tests obtained in April 2005."
Without referring to any other charges, can you tell me exactly why these findings of "violation" are not alarming?
These are very alarming.
Even the CDC, for crying out loud, stresses that tests are unreliable and lyme is a clinical diagnosis. So essentially Dr. Jones is being prosecuted because his patient was "seronegative."
Steere's own camp has been admitting seronegativity (albeit reluctantly) since the cows came home. Now they're going to prosecute someone for a negative western blot?
Give me a freakin break.
Michelle
________________________________
Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi
RJ Dattwyler, DJ Volkman, BJ Luft, JJ Halperin, J Thomas, and MG Golightly
The diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients.
We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed.
Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls. . . .
We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease.
Posts: 3193 | From Northern California | Registered: Apr 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
All I can say is I hope he is very careful in the future. In addition he should take a younger doctor into his practice, and train him. He will have to retire sooner or later. He's already in his 70's.
Posts: 2276 | From united states | Registered: Jun 2004
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bettyg
Unregistered
posted
how about writing abot the newspapers articles on dr. jones decision to date....here's mine!
I'm a 38 year CHRONIC LYME patient misdiagnosed for 34 years by 40-50 drs/specialists!
WHY did it take 34 years to diagnose me??
WHY couldn't IDSA, infectious disease drs. caught it at the beginning?
It's because I had NO RASH, NO VISIBLE TICK BITE OR EMBEDDED TICK, and NO LYME LITERATE MD IN IOWA!! To date, we have NO FULL-TIME time lyme literate mds in our entire state! We have to travel to other states like the family in question in this story!
I was initially diagnosed with mononucleosis/EPSTEIN BARR VIRUS when I was 21 in Jan. 1970!
How did a tick get to me in the dead of winter in Iowa's SUB-ZERO temps? The tick came OFF my folk's LIVE CHRISTMAS TREE!!
How can ticks get into trees? Deer brush up against them; main carrier are birds who fly up into them, and white-footed mice, squirrels, etc. that crawl up in them. Ticks crawl off animals onto the branches and wait for their next "meal" ... us!
I think it is outragious that it took this board 2 YEARS to conduct 8+ hearings!
When the hearings started, there should have been 2 only: producing evidence, and decision made on evidence!
The State medical board caused a HUGE $$$ to have been raised by us, the CHRONIC LYME PATIENTS/PARENTS of those Dr. Jones treated over the many years he CHOSE to treat lyme children while other drs. BURIED THEIR HEADS IN HE SAND AND WOULD NOT TOUCH THESE LYME CHILDREN!
I personally resent what it's done to Dr. Jones, his staff, and all lyme children/parents:
* the almost $1 million dollars out of his/our pockets;
* the additional stress of losing many things in order to pay for these hearings, and
* the stress that we lyme patients do NOT need as we struggle daily with our lyme treatments!
Recently, Dr. Brian Fallon had a review showing that long-term antibiotics DO make a diference in lyme patience in the New England Journal of Medicine.
Did the Board take this into consideration? NO !! Hog wash!
I also disagree with someone to review EACH of his cases one by one! That EXTRA DR. could be put to use as a LYME LITERATE MD and TREAT more lyme children there!!!
We only have around 12 nationwide LLMDS that will treat children! HOW SAD! Animals are treated better than we humans!
I have NO IDEA who is on the FULL BOARD to decide Dr. Jones fate on Dec. 18, but I'm asking this ... that it be EQUAL in numbers of those who believe in LONG-TERM vs. short-term antibiotics, and most IMPORTANTLY, that HALF of the board members have a direct family member with CHRONIC LYME!
Only if YOU can walk totally in our shoes, can you understand and have an intelligent discussion with us!
Remember FOOTPRINTS IN THE SAND! That has been our LLMDS in many cases carrying us when we cold not carry ourselves!
God bless all the LLMDS in USA and internationally for taking us on when no one else would attempt to get us into REMISSION! I'd like to have a quality of life at age 58; 9 years disabled/not able to work anymore, and struggling daily!
Please to the board; REJECT the proposal stated in the article above.
MODIFY it to suit the situation here! We thank you!
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Oxygen-
Dr Jones is and has always been an extraordinarily "careful" physician in every positive sense of that word.
He CARES deeply about his patients and their families and he practices his medical craft with exceptional care: he listens well, he examines thoroughly, he is extremely observant, he provides hope, he is accessible, and he is tenacious in his pursuit of better health for his patients.
So, really, what kind of "careful" are you suggesting he be? To repeat, Dr Jones did NOT DO ANYTHING WRONG OR OUT OF BOUNDS.
He did NOTHING to invite the persecution he is experiencing. The medical board would be going after him regardless- their reasons for doing so have NOTHING to do with anything he did or did not do.
It seems hard for a lot of people to accept, but in the real world completely innocent people DO get persecuted upon occasion.
The fact that Dr. Jones is being relentlessly attacked does NOT mean that he is careless or guilty or any such thing.
What it does mean is that one of the world's foremost medical experts on a formidable, devastating, and epidemic disease is being methodically and ruthlessly driven out of practice simply to protect the reputations of a handful of amoral academics and the profits of a morally corrupt insurance industry.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Tracey9
That was always my question too.....How can doctors on the internet prescribe drugs without ever seeing a patient??? In those cases it's even more obvious that it is to sell drugs.Some people told me that the laws are different in every state. But the internet would cover every state?
The other thing someone mentioned is what about all the kids Jones has helped...the lives he has saved?? It was definitely brought up at the Hearing that the child JOnes prescribed the antibiotics for was also helped. He was better when on them. Duhhhhh. It is obvious that there is an agenda....a very evil self serving agenda.
Posts: 1176 | Registered: Oct 2002
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Is there a way to send this entire thread to the Hartford Courant?
Posts: 4258 | From over there | Registered: Jul 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
sizzled- yes.
i copied the whole thread and it is below.
you could recopy and edit (i'd take away member names for privacy sake) as a word doc and send to the Courant by email.
i have no idea if it is a good idea to do that- and don't trust my brain right now to tell me straight.
dilly ---------------------
--------------------------------
Topic: Dr. J. Panel: Lyme Disease Doctor Should Be Reprimanded TerryK Frequent Contributor Member # 8552 posted 29 November, 2007 11:20 PM ________________________________________ "That view was bolstered by a recent review in the New England Journal of Medicine." Panel: Lyme Disease Doctor Should Be Reprimanded -- Courant.com
By WILLIAM HATHAWAY | Courant Staff Writer 7:41 PM EST, November 29, 2007
In a decision with national implications for how suspected cases of Lyme Disease are treated, a state physician review panel is recommending that controversial pediatrician Charles Ray Jones be reprimanded and put on two years' probation for his diagnosis and treatment of two Nevada children.
If the panel's recommendation is upheld next month, the New Haven area pediatrician -- who gained support across the nation because of his willingness to ignore consensus treatment guidelines and prescribe long-term antibiotics to children suffering symptoms of Lyme -- would also have to pay a $10,000 fine and pay a doctor to review records of his patients.
The decision, in criticizing Jones, could have broad implications. It calls into question the medical validity of treating patients who show symptoms of Lyme Disease -- such as aching joints and fatigue -- but don't meet the criteria established by mainstream doctors.
Proposed Memorandum Of Decision Lyme Disease Links Lyme Disease Rates For 2006 Multimedia Advocates for patients who say they have chronic Lyme Disease argue those criteria are too narrow and lead to needless suffering.
But the panel from the Connecticut Medical Examining Board upheld most, though not all, of the state health department's allegations about Jones' diagnosis and treatment of two Nevada children in 2004 and 2005, which came into question during a bitter custody dispute.
Jones prescribed antibiotics to the son of Jeffrey and Robin Sparks and told the boy's school principal that he had diagnosed late-stage Lyme Disease without ever having seen the boy, the panel found.
Jones also prescribed antibiotics to the Sparks' daughter before examining her.
When Jones finally did see the Sparks' children, he persisted in his diagnosis of Lyme Disease for children without compelling medical evidence to support his diagnosis, the three-member panel found.
"The respondent diagnosed a disease when the exposure risk was extremely low, medical history was non-specific, the signs and symptoms were non-specific, and the laboratory tests were negative,'' the panel found.
Jones defended his actions, saying he has successfully treated thousands of patients suffering from Lyme Disease.
The panel's finding, which will be reviewed next month by the full board, goes to the heart of bitter feud over Lyme Disease.
The majority of medical experts say there is little evidence to support the idea that Lyme Disease, if treated properly, will nonetheless continue to cause ongoing symptoms, a view that has been bolstered by the treatment guidelines issued by two medical associations for the disease.
There is no good evidence, these doctors say, that extended courses of antibiotics have long-term benefits for patients suffering from Lyme-like symptoms. And symptoms experienced by these patients are more likely attributable to causes other than a lingering infection from the tick-borne pathogen.
But advocates for Lyme patients insist there is abundant evidence that the bacterium which causes Lyme can persist for years, even after initial antibiotic treatment and often eludes detection by existing tests. They believe that thousands suffer needlessly because their doctors do not recognize clinical signs of Lyme and refuse to prescribe long courses of antibiotics. Members of the so-called long-term Lyme camp crowded Jones' hearings, which lasted more than a year, in support of the doctor. They raised money to aid in his defense.
"Dr. Jones is being charged with improperly diagnosing and treating Lyme Disease after having treated and cured two children whose health was of great concern to their mother for years,'' said Jones' attorney, Elliot Pollack. "Instead of being sanctioned, he should be complimented.''
Jones treated three of Maggie Shaw's children for Lyme Disease and all got better, the Newtown mother said.
"My concern is not only for my kids, but how will this effect treatment for all children,'' Shaw said.On the other side of the divide, the decision was well-received by the doctors who argue that treating patients with Lyme-like symptoms with long-term antibiotics is not only misguided, but can lead to a failure to properly diagnose other ailments in those patients.
"This decision sends a message to very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme Disease,'' said Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical Center and professor of medicine at the University of Connecticut School of Medicine.
That view was bolstered by a recent review in the New England Journal of Medicine.
In addition to the fines and probation, the panel is recommending Jones hire a doctor to review his treatment regimens quarterly while he is on probation. Future misconduct could lead to a suspension of his license.
The full board is scheduled to review the findings on Dec. 18. They can confirm, reject or modify the findings of the panel.
Carol in PA Frequent Contributor Member # 5338 posted 29 November, 2007 11:32 PM ________________________________________ I could just cry. And I'm not even on antibiotics.
Carol ________________________________________ Posts: 1943 | From: Lancaster, PA | Registered: Feb 2004 | IP: Logged
Tracy9 Frequent Contributor Member # 7521 posted 29 November, 2007 11:37 PM ________________________________________ Thanks for posting this........AAARRRGGGHHHH.... I added a comment to the forum.
Lymeblue Frequent Contributor Member # 6897 posted 29 November, 2007 11:49 PM ________________________________________ Although I don't post as often as before, here is my ``inspiring story''......
6 years a go I was a ``newbie''; I didn't know what this disease truly meant. Today, I'm 100% sx free; even my residual sx went away. God only knows for how long, but for now I'm feeling mostly sx free. This is more than enough compared to my first years not only suffering the horrible and indescribable symptoms but to find friends who talked the same ``language''.
I just want, with a few words, to let you know what kept me battling this disease even though I was getting, at some point, sicker and sicker. You know even after years of abx you might go down the hill if co-infections have not been treated.
The first LLMD I met was Dr. J, New Haven ,CT.
As some of you know, I got bitten at a state park in FL along with my 2 daughters in May 2000. To make the story short, I was misdiagnosed by an ID; I didn't have the rash, FL is not endemic, my bloodwork was negative, my ``subjective sx'' were anxiety: the perfect recipe for disaster, or maybe a wheel chair. Who knows ?
At least I had the privilege of clearly recalling tick bites.
But, since things happen for a reason and I really find this one complicated to believe; since my daughters were infected, too, I ended up meeting with Dr. J in his office. He is our ``Angel''.
While I was treated by a NON LLMD DR, due to the fact that I didn't have enough money at the time, my daughters had the privilege to see the best LLMD in the world for children.
He treated them and both went into remission after abx treatment for 9 months. On the other hand, I was sicker even though I was on abx (wrong dosage, wrong abx, etc). Dr. J said several times that Lyme should be treated until sx disappear.
A couple of years later, in 2002, I was prescribed other abx `s some old sx disappeared other new ones appeared It seemed like the never ending story, but by repeating Dr. J's words in my head, `` Until sx disappear.'', motivated me to move mountains, to question my whole family, to stop visiting some friends and relatives and to build other relationships, to find the money to see an LLMD and definitely educating my self on medical studies, other lymies experiences , and above all listening to my body.
I had the privilege to be one of many patients that Dr. B, East Hamptons, NY treated. He addressed my bart and babs and other issues like H pillory, etc... At this point, not only the improvement was enormous, but Dr. J's words were proving to be true. ``Until symptoms disappear.''.
Later on Dr. B retired and although I was almost symptom free, regarding my health, I knew the job was not complete. One more time the ``enormous'' privilege or the ``miraculous opportunity'' to go to another great LLMD. Dr. H, NY.....after some months under his care he told me `` no more abx.'' and I've been abx free since then;only Cowden's+ supplements.
As you see Dr. J made, not only me, but my loyal husband also to believe and pursue what once I thought was impossible. Not only that I was going to be at a stable health level, but to believe in myself, too.
Now : WITH TEARS STREAMING DOWN MY FACE I'M MOVING MOUNTAINS FOR HIM PLEASE HELP DR JONES MY FAMILY AND MANY OTHERS ARE FUNCTIONAL BECAUSE OF HIM THERE ARE MANY MORE KIDS WHO NEED HIM.
P.S Wanted to add, too, that after more than 4 years abx and sx free my youngest relapsed or got re-infected. Of course, none of her local doctors knew she was relapsing or suffering of lyme disease. I was suspecting she was, but was not sure and having lyme myself I was tagged ``obsessed with lyme'' when she landed twice with cardiac involvement in the ER. One more time the only person who really helped was Dr. J and that's another story. ________________________________________ Posts: 564 | From: The sky | Registered: Feb 2005 | IP: Logged
Beverly Frequent Contributor Member # 1271 posted 30 November, 2007 12:13 AM ________________________________________ How can they completely IGNORE that the children they are talking about got BETTER..it's INSANE!!! Talk about being biased.... I wonder what the AG will say about this..it's so completely biased.
This makes me so angry!!!
Dr. Jones is a living Saint and he deserves a Metal of Honor. ________________________________________ Posts: 6264 | From: Michigan | Registered: Jun 2001 | IP: Logged
Robin123 Frequent Contributor Member # 9197 posted 30 November, 2007 01:19 AM ________________________________________ Lymeblue, your story is very compelling. Maybe more of Dr J's patients can write in to the Courant and post comments about their life-saving experiences with Dr J.
This Connecticut Medical Examining Board panel, who are they? I'd love to see their number posted here, so we can call them, like we've done on behalf of other LLMDs who've been harassed. ________________________________________ Posts: 1284 | From: San Francisco | Registered: May 2006 | IP: Logged
lymieliveagain2007 Flash Member Member # 13936 posted 30 November, 2007 01:43 AM ________________________________________ how disgusting.
they probably have the doctor who will do the reviews all lined up as well.... one who's higher power is the almighty insurance company's.
so sad.
God bless the children with lyme. I hear pediatric llmd's are hard to find.
dr J gives sick kids the chance to get well and enjoy their childhood. no kid should suffer 1 second longer than neccessary.
they grow up way to fast. they should get the treatment they NEED!!!!!
these people trying to stop dr j should be ashamed. I'm sure they would think differently if their own child was afflicted. ________________________________________ Posts: 17 | From: woburn,ma | Registered: Nov 2007 | IP: Logged
heiwalove Frequent Contributor Member # 6467 posted 30 November, 2007 01:46 AM ________________________________________ well, the words i have in response to this news are not allowed on this board.
i was fortunate enough to be able to attend one of dr. j's hearings in hartford in april; when i met him and thanked him for everything he does for lymed kids, it was almost impossible to keep the tears from streaming down my face. he gave me a hug, looked deep in my eyes and asked about my story, how i was feeling, etc. he is truly a saint and one of my biggest heros.
when is this ridiculousness ever going to end????
-------------------- http://www.myspace.com/violinexplosion ________________________________________ Posts: 1029 | From: brooklyn, ny | Registered: Nov 2004 | IP: Logged
adamm Frequent Contributor Member # 11910 posted 30 November, 2007 02:04 AM ________________________________________ These people are madmen
[ 30. November 2007, 10:56 AM: Message edited by: adamm ] ________________________________________ Posts: 317 | From: WI, usa | Registered: May 2007 | IP: Logged
Tracy9 Frequent Contributor Member # 7521 posted 30 November, 2007 02:38 AM ________________________________________ Every day I wake up with an 18 year old son who may have had a childhood, some normal teenage years, if Dr. Z hadn't dismissed the idea of "chronic lyme" based on the fact that his spinal tap only revealed one band. He had all the clinical symptoms, and had a bullseye rash and positive testing about a year earlier, but never bounced back to good health.
Now four years later we are fighting for treatment for him and plan to get him to Dr. J. As I said in my commment, I believe Dr. Z robbed my son of his childhood.
And one day soon, I am going to schedule a "follow up" appt with him with the SOLE purpose of showing him what he did to my child.
He might be able to ignore a letter, but let's see how he reacts to a reasonable yet irate mother armed with data and facts who confronts him with the irrperable damage he has caused my son. Ryan can NEVER get these years back. And Dr. Zemel ain't gonna know what's hit him!!!!!!!
Why isn't HE being examined by the board? Maybe I need to be the first one to file a complaint against him.
CaliforniaLyme Frequent Contributor Member # 7136 posted 30 November, 2007 11:21 AM ________________________________________ My angle LLMD treated my daughter but every decision he ran through Doc J- and I credit Doc J with saving my daughter from a childhood of unrelenting pain. He is an angel on earth-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer ________________________________________ Posts: 4608 | From: Aptos CA USA | Registered: Apr 2005 | IP: Logged
AliG Frequent Contributor Member # 9734 posted 30 November, 2007 12:35 PM ________________________________________ I just have to say that these assaults on LLMDs really sicken me.
Here's what I don't really understand. If someone is ill & an educated, licensed physician treats their illness using whatever means they see fit based on ther clinical experience, why are they persecuted for healing people just because they think "outside the box"?
What IS IDSA'a problem? They fear that it is not Lyme, but something else instead? Who the heck cares what you call it, as long as people who are receiving treatment are getting well? I say go with what works.
Why don't doctors come up with a new name for this disease, when it doesn't conform to IDSA's pretty little picture. Then, depending on the CDC test results, you either have Lyme or "Whatyamacallit Disease". If IDSA's treatment fails, you must have been contracted "Watyamacallit" too. That's OK because WLMDs can help you get rid of it!
Since a Dr. versed in "Whatyamacallit" can also treat Lyme, I'd recommend going to them first.
If IDSA is taking the position of "it must be something else, since your treatment works & ours doesn't", they should be trying to figure out what it is and establish a credible identity for it. IMO, it can not be just a "syndrome" and not caused by an infectious agent if antibiotics can put a person into long-term remission, but then again I'm NOT an IDSA doctor so what would I know???
I'd just love to invite these clowns over for a nature hike and see how many show up without tick protection. After all, this IS an easily identified, easy to treat infection, right? I'm sure they wouldn't fall pray to the multi-system hypochriacal syndrome that follows. At least if they did, we'd have more doctors joining ILADS.
They're JERKS!!!! Those leaders of the Infectious Drivel Spewing Association make me positively nauseous with the suffering they cause & perpetuate!!!!!
Allie Frequent Contributor Member # 10778 posted 30 November, 2007 01:15 PM ________________________________________ Hey all,
First and foremost I totally agree with everything people have written. This is a sad, sad day that Dr. J wasn't totally acquitted.
I've been following the case closely, have discussed it with my LLMD, and attended one of Dr. J's hearings.
That being said, the pessimistic, scared side of me thought the worst and that Dr. J would totally lose his license.
He made a mistake when he prescribed meds before seeing the children.
The recommendations of the panel are to give him a fine ($10,000) that is paltry compared to the amt CT and Dr. J had paid in legal fees. Seems like a slap in the wrist. Is having an MD oversee charts a slap too? That I know nothing about.
What I'm mostly scared about is the other 4 charges... Don't know anything about those... $%#$!!!
OK Now you can lambaste me for my possible optimism in a time like this.
I really feel like with all the chicanery and B.S. that went on during these hearings that the CT board had to do something (however minor) to reprimand Dr. J.
Humbly, Allie
-------------------- "The great enemy of the truth is very often not the lie -- deliberate, contrived and dishonest -- but the myth -- persistent, persuasive and unrealistic." JFK ________________________________________ Posts: 97 | From: Rhode Island | Registered: Dec 2006 | IP: Logged
lymednva Frequent Contributor Member # 9098 posted 30 November, 2007 01:26 PM ________________________________________ In my opinion it's the PANEL who needs to be reprimanded!
jcb Flash Member Member # 8594 posted 30 November, 2007 03:07 PM ________________________________________ If this order is confirmed as is a "monitor" will look at 30 patient files every 90 days. As I would not want my child's patient file to be looked at in this way, I will assert my right of consent and not allow to such disclosure. It will have to be done in writing to have effect. ________________________________________ Posts: 6 | From: Weston CT | Registered: Jan 2006 | IP: Logged
sizzled Frequent Contributor Member # 1357 posted 30 November, 2007 03:22 PM ________________________________________ The Department of Health and the Medical Board should be investigated. ________________________________________ Posts: 3992 | From: over there | Registered: Jul 2001 | IP: Logged
lymeladyinNY Frequent Contributor Member # 10235 posted 30 November, 2007 03:42 PM ________________________________________ "The respondent diagnosed a disease when...the laboratory tests were negative."
Duh!! How many times have we got to tell these jerks that the lab tests aren't ACCURATE!
-------------------- I want to be free ________________________________________ Posts: 315 | From: Endicott, NY | Registered: Sep 2006 | IP: Logged
MysteryGirl44 Frequent Contributor Member # 10201 posted 30 November, 2007 04:52 PM ________________________________________ Poor Dr. Jones
-------------------- Always believe in yourself, even when others don't.
www.myspace.com/lymediseaseawareness ________________________________________ Posts: 178 | From: Sparta, New Jersey | Registered: Sep 2006 | IP: Logged
FightFireWithWater Frequent Contributor Member # 5781 posted 30 November, 2007 08:14 PM ________________________________________ ...and poor children, parents, and world if this recommendation stands.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! ________________________________________ Posts: 1199 | From: does not list | Registered: Jun 2004 | IP: Logged
Greatcod Frequent Contributor Member # 7002 posted 01 December, 2007 11:41 AM ________________________________________ Its not about Dr. Jones, its's about Lyme politics.
"This decision sends a message to very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme Disease,'' said Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical Center and professor of medicine at the University of Connecticut School of Medicine. ________________________________________ Posts: 896 | Registered: Mar 2005 | IP: Logged
oxygenbabe Frequent Contributor Member # 5831 posted 01 December, 2007 12:05 PM ________________________________________ I'm sorry but, as good as Dr J is, and as dedicated, he should never have prescribed medicine to children he had not seen in person.
That is not safe practice of medicine.
I don't know why he did it. I'm glad he will be able to continue to practice. ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
tdtid Frequent Contributor Member # 10276 posted 01 December, 2007 12:20 PM ________________________________________ Total insanity. Makes you want to cry. Thanks for posting.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha ________________________________________ Posts: 609 | From: New Hampshire | Registered: Oct 2006 | IP: Logged
luvs2ride Frequent Contributor Member # 8090 posted 01 December, 2007 01:11 PM ________________________________________ I agree, agree, agree.
1-The LLMDs need to be very very careful in how they treat.
2-I,too, am planning to confront my duck rheumy one day. I already have all the evidence, tests, results, etc but am still waiting for me to calm down enough to do it without looking like a raging idiot.
3-The drs I work with do not say Lyme. They focus on and talk about the things I am test positive for. This is so much so, I actually asked my LLMD "Do I have Lyme?" She looked at me like I was nuts and said "Of course". She doesn't talk about it in the records though although she does pull a lyme test along with many others about once a month. I think this is very smart tactic to protect her butt and keep her in practice.
All 3 drs I have worked with always use the R.A. label to work under. It is safe to treat.
4-There must be some forum, some body of government where we can present our test positive evidence and our treatment positive results (I'm speaking of those of us who have positive tests and positive treatment results). They would not be able to just continue ignoring clear results.
5-Yes! Why aren't doctors like my Internist pulled before the board? I went to him 48hrs after the recent tickbite. I presented with 101 fever and his bloodtest showed elevated white blood cells. I had the tick. Still, he did not run a lyme test and refused to test the tick. I requested 2 weeks doxy which he complied but he said "I was scary". Hhmph! I think he is scary!
And why aren't doctors like my rheumatologist pulled before the board. When he diagnosed me in Jan 06 as having RA, I researched and learned about the infectious connection. I went to him armed with a medical history of infections including lyme, strep, H. Pylori. I REQUESTED tests for strep, H. Pylori, mycoplasmas, etc and he REFUSED! Why should he be allowed to refuse my request? This is MY BODY!
Now I have positive test results for H. Pylori, Babesia WA-1, EBV, QFever. Only (HA!) 3 bands positive for Lyme so that would not hold up in court.
Treating for the HP alone eliminated the last of my joint pains. Why can't I sue him for letting me suffer 1 1/2 yrs when treating HP would have gotten me symptom free?!!!!
Luvs ________________________________________ Posts: 1618 | From: Buchanan, VA | Registered: Oct 2005 | IP: Logged
luvs2ride Frequent Contributor Member # 8090 posted 01 December, 2007 01:13 PM ________________________________________ Yeah, I know. I'm the one that has to initiate legal action.
Anyone got any extra funds? Can I start a Lyme Offense fund drive? LOL.
Luvs ________________________________________ Posts: 1618 | From: Buchanan, VA | Registered: Oct 2005 | IP: Logged
FightFireWithWater Frequent Contributor Member # 5781 posted 01 December, 2007 01:21 PM ________________________________________ Re the decision Dr. J. made, I'd rather have a doctor who was more interested in following the spirit of the law than the letter of the law. Dr. J. put the needs of his patients first. Woe to us if that becomes impossible for a doctor to do.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! ________________________________________ Posts: 1199 | From: does not list | Registered: Jun 2004 | IP: Logged
oxygenbabe Frequent Contributor Member # 5831 posted 01 December, 2007 01:26 PM ________________________________________ Whatever you may "rather", to let a doctor diagnose and treat patients without an in office consult would lead to mayhem in the entire medical profession and much abuse.
I heard it is not the first time he did it.
For such a marvelous doctor he made some serious mistakes and its good the lyme community rallied to support him and the result is a relatively small fine.
He is apparently a great doctor but he should've known better.
The medical profession has rules and laws that's why there is malpractice. You are dealing with people's lives. You can't treat people in other states sight unseen. It's unethical, and besides, you could miss important diagnoses you'd make in person. No doctor is above the law. ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
Momfromtexas Frequent Contributor Member # 13726 posted 01 December, 2007 01:56 PM ________________________________________ Yes he treated patients without an initial comsult when he was too booked to get them in. He did see these patients soon after starting treatment.
But that is not the full story.
Read further down in the document on his disciplinary action, they also disapproved of his diagnosis based on symptoms alone, his ignoring a negative lyme test, and his long term treatment saying it was not justified.
If he had only treated intially without seeing the patient and then followed up as he did shortly after, then that would not have been enough for him to be put on probation, they based it on the number of issues they had with the overall treatment.
oxygenbabe Frequent Contributor Member # 5831 posted 01 December, 2007 02:36 PM ________________________________________ There are ways to be an LLMD and treat lyme patients for years, well and consistently, without getting into trouble.
The ones who get into trouble, there are reasons for it.
Those ones may be pioneers, saints and dedicated but they make mistakes and cause problems, too. It's not so black or white.
The stupid infectious disease doc I went to the first summer I had lyme, who said 2-3 weeks of doxy would be fine (and frankly, it HAS been fine, just fine, for a couple friends of mine with no problems even years later) told me how appalled he was at Dr. B (long island) treatment of a woman he saw. He said she was on IV rocephin for SEVEN years and had such a big fungal ball in her sinuses she had to have surgery to have it out.
A regular doc only has to see one case like that to form an opinion.
There were complaints about Dr. J in South Carolina, and what Dr. Jones did also was not kosher.
You don't treat patients out of state before you see them. You don't put people on IV abx for years. You have to be cautious. You need to document not just through western blots and PCRs but spect scans and other tests to give a picture.
You should start with orals unless a patient is severely neurologically ill.
If the OPMC starts going after Dr. L or Dr. F at Columbia then I'll change my tune.
As it is, I think all the above docs (not dr L or Dr F) deviated from good medical care at times and put their patients at risk, even as they saved many many lives.
And if you're going to deviate from standard of care (which is not necessarily good) you have to bend over backwards to document what you're doing, precisely for the reason that you're out there and putting your practice at risk by not following convention. ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
Momfromtexas Frequent Contributor Member # 13726 posted 01 December, 2007 02:53 PM ________________________________________ The worrisome part about what the medical board decided about Dr Jones is that they consdiered it wrong that he
1. Diagnosed and treated for lyme based on symptoms despite a negative lyme test.
2. That he treated a patient for lyme disease with long term antibiotics (not IV antibiotics for 7 years).
If he had just started treatment without seeing the patient first they would not have reprimanded him. It was because they felt he had done multiple things wrong. ________________________________________ Posts: 37 | From: Texas | Registered: Oct 2007 | IP: Logged
bettyg Frequent Contributor Member # 6147 posted 01 December, 2007 03:12 PM ________________________________________ yes, it is disgusting! look how much $$$ went out for dr. jones defense and still.
speaking of that, dr. jones had someone post how he needs more money for his $1,000 a DAY to pay for all these bills.
suggestions on this/other stuff: *******************************
1. for any of you who doesn't need gifts/money, how about sending some to dr. jones defense fund?
2. someone mentioned lawsuit above, go over to ACTIVISM and read the post there about a class action suit, and what ideas have been made!
3. HAVE YOUR SENATORS/HOUSE REPS IN DC "CO-SPONSORED" OUR LYME DISEASE BILLS IN CONGRESS?
HR 741 and S 1708 ******************
again, go to ACTIVISM AND CHECK IT OUT!
start emailing them, calling, or seeing them in person if they live nearby and HOME FOR THE HOLIDAYS!
LET'S GET BOTH BILLS SIGNED THIS YEAR AND PRES. GW BUSH SIGN OFF ON IT since he is not a lymie like the rest of us!
4. write your feedback stories to dr. jones and other things going on with lyme that we read about daily here! MAKE OUR VOICES KNOWN; WE ARE NOT GOING TO GIVE UP! THEY HAVE TO RECKON WITH US DAILY as we do all their BS!!
-------------------- info purposes only;NOT CONSIDERED MEDICAL ADVICE!Info providedshould NOT be used replacing YOUR PERSONAL MD ADVICE.SITE LINKS are provided for EASY RESEARCH.Site Info is the opinion of those WHO publish the sites;NOTnecessarily that of Betty G. ________________________________________ Posts: 12187 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged
ldfighter Frequent Contributor Member # 9405 posted 01 December, 2007 03:22 PM ________________________________________ quote: ________________________________________ Originally posted by oxygenbabe: There are ways to be an LLMD and treat lyme patients for years, well and consistently, without getting into trouble.
The ones who get into trouble, there are reasons for it....
If the OPMC starts going after Dr. L or Dr. F at Columbia then I'll change my tune. ________________________________________ Sorry, but I think this is very, very wrong.
For starters, there are reports the OPMC did in fact try to go after Dr. L, until they were told to stop harassing Lyme doctors. I can't confirm it but it was discussed on the google group years ago.
Second, read the panel's recommendation. Apart from the issues of prescribing, one charge was based exclusively on diagnosing Lyme outside the CDC definition. (no CDC positive western blot, nonspecific symptoms) This charge was upheld! Medical negligence, for treating a patient who didn't meet CDC criteria!
We can debate whether either of the Dr. J's made mistakes, but there is no question in my mind that these charges were used for a larger purpose -- to set a precedent that there is only one standard of Lyme care.
It is a strategy. Find whatever mistakes you can (even if many doctors do the same things), and pair them with charges of overdiagnosing Lyme, which sets the precedent to end chronic Lyme care.
That's what Zemel's quote is about.
Remember what the CT health board said at first? They promised this case had nothing to do with Lyme! And then they get him on a charge of not following the IDSA standard of care!!
We need to wake up. EVERY LLMD IS AT RISK. ________________________________________ Posts: 470 | From: US | Registered: Jun 2006 | IP: Logged
Greatcod Frequent Contributor Member # 7002 posted 01 December, 2007 03:44 PM ________________________________________ Exactly, Idfighter..again from the article
"This decision sends a message to very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme Disease,'' said Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical Center and professor of medicine at the University of Connecticut School of Medicine.
This was the medical lynching of a LLMD, period. Doctor's screw up with great regularity, failing to diagnose, diagnosing wrong--not just about Lyme--and rarely get called up by their medical boards. And I could be wrong, but I believe the mother was a nurse, and the telephone prescriptions were for conditions other than Lyme..Plus the husband apparently once bit the children in a fit of rage--making the absurdity of it all total. ________________________________________ Posts: 896 | Registered: Mar 2005 | IP: Logged
oxygenbabe Frequent Contributor Member # 5831 posted 01 December, 2007 05:20 PM ________________________________________ A doctor friend of mine in the loop told me it's not the first time Dr. Jones prescribed in this way.
I'm sorry but, he left himself open to attack by not following standard of care that way and the punishment is rather mild.
That's good. But the world is not divided into: 'LLMD good, other docs bad." ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
ldfighter Frequent Contributor Member # 9405 posted 01 December, 2007 05:58 PM ________________________________________ oxygenbabe, the prescribing issue you keep raising is a totally distinct charge. Each allegation was evaluated separately.
The following "violations" of "the standard of care" are about one thing: diagnosing Lyme outside IDSA guidelines:
"With regard to the allegation contained in paragraph 5e of the Charges, the Department sustained its burden of proof that [Dr. J] violated the standard of care by diagnosing a disease in a very low risk patient, with a non-specific history, non-specific signs and symptoms, and negative laboratory tests."
"With regard to the allegations contained in paragraph 5j of the Charges, the Department sustained its burden of proof. Respondent failed to reconsider his diagnosis of SS in light of the negative Western Blot tests obtained in April 2005."
Without referring to any other charges, can you tell me exactly why these findings of "violation" are not alarming? ________________________________________ Posts: 470 | From: US | Registered: Jun 2006 | IP: Logged
Topic: Dr. J. Panel: Lyme Disease Doctor Should Be Reprimanded Momfromtexas Frequent Contributor Member # 13726 posted 01 December, 2007 06:22 PM ________________________________________ After having been in the position of having to travel quickly with an incredibly sick child, too sick to travel after a week in the hospital, to get care for a disease that no one in my town will even recognize, I say bravo to Dr J for helping that child in Nevada. I see he helped a child who's father clearly did not believe he/she was sick, the mother was trying to get care any way she could in a state where Lyme disease does not exist.
The review board clearly states in the summary as to why they put Dr J on probation is because of ALL the items they found he violated, a preponderance of violation, NOT just the one item oxygenbabe has focused on.
Their expert witness they based their treatment evaluation on was Eugene Shapiro, one of the authors of the IDS guidelines causing those with Lyme disease so much trouble. Dr J didn't have a chance.
Many children are well and walking around now because Dr J treats based on his years of expience taking care of children with Lyme, since the early days of its initial discovery. He did what he thought was best for the health of the child rather than following exact guidelines which as we know with lyme disease is often necessary.
In todays antilyme clmiate, my son was turned away by doctors too afraid to recognize he had Lyme let alone treat it.
Hides1 Frequent Contributor Member # 6348 posted 01 December, 2007 06:25 PM ________________________________________ Just a note to those who are talking about how he should not have prescribed without seeing the child. I sat in on the hearing whereby the mother testified and was amazed. SHe testified the boy's own school would no longer let him attend anymore because of the awful cough he had.
History had showed Zithromax helped the cough but then it always came back. His physician at the time would no longer give him the med at the medical center he went to. The mother who had been diagnosed with Lyme had sought out Dr. Jone's help in order to evaluate her son's puzzling realm of symptoms. Dr. Jones read the case by fax and then prescribed the Zithromax to my knowledge with the expectation hey were also flyign in for an appointment. So you see there were many areas covered before he just prescribed it. How many times have our regular doctors called something in for us?
The boy had showed improvement on Zithro in the past with other docs therefore Dr. J prescribed that until an appointment was met. After staying for that hearing I was appalled that the medical board would even consider going after Dr. J. I was also appalled at how unprepared their attorney was and how few questions he asked the mother. What a set up if I ever saw it!
In the end it is so sad this case is even being questioned since Dr. J helped heal this wonderful child and his sister for that matter and they are happy healthy kids in school now! Meanwhile there are hundreds of pediatricians missing Lyme diagnoses in young kids and propelling them into chronic disease later on in life! ________________________________________ Posts: 128 | From: Bethlehem, PA | Registered: Oct 2004 | IP: Logged
Ann-OH Frequent Contributor Member # 2020 posted 01 December, 2007 06:40 PM ________________________________________ I agree, Hides. I don't think Dr. J. did something so horrible.
I know of one of the docs who is part of the Steere clique who prescribed for someone on the phone without ever seeing the patient. Nobody went after him. And it was not a medication the person had ever taken before either. She got worse, by the way.
When you are pulled into the middle of a divorce, as in this case,no body plays fair, it seems to me.
I don't think Dr. J. deserves any of this. Hard to say what the full board will do. I just hope they aren't harder on him than the panel was. That can differ from board to board, I am sure.
oxygenbabe Frequent Contributor Member # 5831 posted 01 December, 2007 06:44 PM ________________________________________ I don't mean to offend anybody but that's how I see it. You need to see the patient in person and do an actual consult. That is standard practice and *it* *should* *be*. ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
shazdancer Frequent Contributor Member # 1436 posted 01 December, 2007 09:54 PM ________________________________________ I'm not offended, oxygenbabe. Additional info in this case is that the mother for whose children he prescribed is an RN herself, and trained in identifying the ticks that bit them. If he had to prescribe before seeing them, he couldn't have picked a safer person to do it with.
I was expecting a slap on the wrist, but this sounds to me like it goes a bit beyond that.
bettyg Frequent Contributor Member # 6147 posted 02 December, 2007 02:02 AM ________________________________________ shaz, i agree with your statement above, ________________________________________ Posts: 12187 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged
luvs2ride Frequent Contributor Member # 8090 posted 02 December, 2007 04:45 AM ________________________________________ Hearing the full explanation behind why Dr J prescribed medicine before examining the child does make it a little more understandable.
Still Oxy makes a very important point. Lyme doctors are under special scrutiny and must be very careful. Additionally, parents also need to be very careful. In this day and age, doctors and hospitals can report you to child welfare and if they think you are endangering the child by insisting on too much medication, you may have your child taken away. Even if both parents are in agreement about the need for treatment. In this case, it sounds like the husband was trying to prove the mother unfit so he could gain custody.
Someone asked how many times have doctors prescribed meds for us by phone. In my case, zero. And that is the doctors who already know me. I do not think this is a common practice.
Luvs ________________________________________ Posts: 1618 | From: Buchanan, VA | Registered: Oct 2005 | IP: Logged
sizzled Frequent Contributor Member # 1357 posted 02 December, 2007 08:10 AM ________________________________________ According to testimony, Eugene Shapiro diagnosed,"No Lyme", in children he NEVER SAW.
May I ask WHY this is acceptable????
By the way, these children were fortunate to go on to see Dr. J and receive tx...for which they got better. ________________________________________ Posts: 3992 | From: over there | Registered: Jul 2001 | IP: Logged
shazdancer Frequent Contributor Member # 1436 posted 02 December, 2007 08:57 AM ________________________________________ Sizzled, I agree. Perhaps we should start reporting some of those ducks that diagnosed us without seeing us.
I had one. I needed to renew my script for doxy from my walk-in doc who had prescribed it. I got his colleague on the phone, who said I no longer had Lyme, I had rheumatoid arthritis. He'd never even met me, and I never so much as described my symptoms to him. ________________________________________ Posts: 1083 | From: Maine! | Registered: Jul 2001 | IP: Logged
sizzled Frequent Contributor Member # 1357 posted 02 December, 2007 07:05 PM ________________________________________ Shaz, that's medical neglect...or worse, malpractice.
People HAVE been reporting ducks to the medical boards.
And what becomes of them? ________________________________________ Posts: 3992 | From: over there | Registered: Jul 2001 | IP: Logged
oxygenbabe Frequent Contributor Member # 5831 posted 02 December, 2007 07:20 PM ________________________________________ I remember a lawsuit that ruled in favor of a boy whose lyme went undiagnosed. This was in Pennsylvania a few years ago? I don't remember all the details. ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
Tracy9 Frequent Contributor Member # 7521 posted 02 December, 2007 09:26 PM ________________________________________ What about all these doctors on the Internet that diagnose and prescribe meds without ever seeing the patient???????
sometimesdilly Frequent Contributor Member # 9982 posted 03 December, 2007 01:34 AM ________________________________________ Having neuro Lyme that is kicking my arse at the moment, a 5 year old with Lyme who is losing progress, a dying father, a husband at a breaking point with stress and what not, i simply can't follow all the ins and outs of this thread.
i seem to be hearing some say that dr jones made a mistake in how he treated those NV kids. Not, not, and NOT.
PLEASE don't comment here or any other place about the facts of the case unless and until you have bothered to read the whole story.
Dr Jones did NOTHING wrong! He is being persecuted BECAUSE he is so esteemed and competent. If he is taken down by whatever means- bankrupting him is the preferred means at present, just how many of our LLMD's do you think would be treating us the year after?
Dr Jones in his own right is deserving of every ounce of total support any and all of us can muster.
Beyond that, anyone who thinks this persecution of Dr. Jones is happening in isolation or is because of anything he has done is sadly missing the big picture.
Since i have understood the politics of this sh@#@#ty disease from the first, I have been fully supportive of DR Jones since the first time i visited a LLMD and read about him in leaflets my LLMD had in his waiting room.
Now that he is my son's treating doc and the only doctor on planet earth fully qualified to help my son, I am fiercely protective of this incredible man who understands COMPLETELY what this fight is about- and he isn't fighting it for his own well being.
I'm not here a lot right now, but i'm going to haunt this thread until i see that the folks posting here have done their homework.
end of lecture- dilly ________________________________________ Posts: 961 | From: nowhere recognizable | Registered: Aug 2006 | IP: Logged
bsigel Flash Member Member # 11810 posted 03 December, 2007 02:33 AM ________________________________________ I agree Dilly!!!! Dr. J is a wonderful doctor. Standard of care??? There isn't a standard of care for lyme disease. Most in the medical profession run away from the increasingly growing epidemic because they are cowards or just plain ignorant.
Dr. J did nothing wrong. He is still trying to help sick children that the rest of the medical profession just give up on.
My daughter has been on IV rocephin for 3 months and it is working!!!!! She did orals for months, bicillin and orals for months and we didn't see much improvement. She can talk again and doesn't have to pause every 3 seconds to try to remember what she was going to say. She can spell words again!!!!
Please do not put down the one person in the medical profession that is trying to save her life. He should be applauded for helping those children from Nevada. ________________________________________ Posts: 13 | From: Warfordsburg,PA | Registered: May 2007 | IP: Logged
Ellie K Frequent Contributor Member # 12056 posted 03 December, 2007 04:20 AM ________________________________________ I entirely agree w/ the majority of posters here: Dr. J is a hero for Lymies.
To Oxygen: The so-called "standard of care," against which any defendant doc's behavior is analyzed in medical malpractice cases, isn't a black-and-white inquiry. If only the world were that clear cut.
Rather, courts looks to whether or not a doctor's professional behavior was "reasonable" under the circumstances. A lot of factors can help courts determine what counts as "reasonable," e.g., what another/hypothetical "average" doctor would have done given the same set of facts. We do not ask our doctors to be perfect or faultless.
The problem in these cases, then, is how we define "reasonable" or "average" in light of the huge discrepancy b/w ILADS/IDSA professional standards.
Along with others here, I think it's clear that Dr. J acted reaonably under the circumstances, when all factors are taken into account: The boy came in soon after the script was called. He was very ill. His mother was nurse. Dr. J read the facts of the case via fax. When there are children involved, I think there is a stronger sense of urgency in getting immediate care.
I've had doctors (LLLMD's and non-LLMD's) call scripts in for me many times, if I have been too sick to come to the office immediately. If you took out the Lyme element in Dr. J's hearing, the medical board wouldn't have had a case.
What if Dr. J hadn't prescribed the Zithromax b/c the boy was not well enough to fly out at that moment? Many might argue that that omission itself is a crime.
IDSA is disgusting. Truly. This was a calculated and opportunistic attack on a leader in the Lyme community. They manipulated a bitter divorce to their advantage.
The precedential value of this case is extremely scary.
I am thankful we have a pretty good safe harbor for LLMD's here in Cali. I would hate to ever put my LLMD's at risk. ________________________________________ Posts: 322 | From: Oakland, CA | Registered: May 2007 | IP: Logged
Momfromtexas Frequent Contributor Member # 13726 posted 03 December, 2007 07:44 AM ________________________________________ Oxygenable, and a couple of others, have pulled one minor infraction and focused on it, that is why it was at the top of the list in Dr J's report.
That is exactly what the review board wanted you to do.
It was the ONLY solid thing they could find Dr J did wrong and yes they hoped people would pick up on it and then believe his review and reprimand are justified.
Many recovered kids stepped forward to help him.
He is not a quack doctor set up just to make a quick dollar off lyme.
He is a well established and very highly respected pediatrician from that area and could have continued to just treat other diseases and stay out of this controversy if he had wished.
He was one of the team of doctors that fought the first battle for Lyme, having it recognized that the poor children with the debilitating disease that was at first called juvenile rheumatoid arthritis actually were infected with a bacteria that was treatable by antibiotics.
He has been fighting this battle for decades. When people call him a saint, it is not too far from the truth.
We must stand behind, support and protect him and the other LLMDs that care.
Since the IDSA associated doctors are out to remove them from practicing, the only chance they have is support from the public and the political influence that might yield!
The only way this whole anti-lyme movement will be stopped is if we all step forward and write letters to government officials, speak out when necessary, donate to Dr J's fund and that of other doctors if we are able.
I see it that a donation to Dr J's fund, is like a vote for his lyme treatment methodology, just like donating to a politician whose ideas you support.
These LLMD's must have our unwavering support.
We need to do this if there is any hope for research to continue on how to treat those with chronic lyme and that a cure might be found now not 20 or 30 years from now when the current doctors with a stranglehold on the IDSA retire.
There is a lot of research out there that needs to be pulled together. Much of it is being done overseas because of what is happening here in the US so it might not apply to the strain of bacteria we have here.
On Lymenet, we are reading and commenting on tidbits of research we find but what we really need is a solid team of medical doctors researching this disease without fear of reprisal and distortion of their work from the likes of Shapiro, Steere, Wormser and others.
Michelle M Frequent Contributor Member # 7200 posted 03 December, 2007 08:38 AM ________________________________________ quote: ________________________________________ Originally posted by ldfighter:
The following "violations" of "the standard of care" are about one thing: diagnosing Lyme outside IDSA guidelines:
"With regard to the allegation contained in paragraph 5e of the Charges, the Department sustained its burden of proof that [Dr. J] violated the standard of care by diagnosing a disease in a very low risk patient, with a non-specific history, non-specific signs and symptoms, and negative laboratory tests."
"With regard to the allegations contained in paragraph 5j of the Charges, the Department sustained its burden of proof. Respondent failed to reconsider his diagnosis of SS in light of the negative Western Blot tests obtained in April 2005."
Without referring to any other charges, can you tell me exactly why these findings of "violation" are not alarming? ________________________________________ These are very alarming.
Even the CDC, for crying out loud, stresses that tests are unreliable and lyme is a clinical diagnosis. So essentially Dr. Jones is being prosecuted because his patient was "seronegative."
Steere's own camp has been admitting seronegativity (albeit reluctantly) since the cows came home. Now they're going to prosecute someone for a negative western blot?
Give me a freakin break.
Michelle
________________________________
Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi
RJ Dattwyler, DJ Volkman, BJ Luft, JJ Halperin, J Thomas, and MG Golightly
The diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients.
We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed.
Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls. . . .
We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease. ________________________________________ Posts: 2629 | From: Northern California | Registered: Apr 2005 | IP: Logged
oxygenbabe Frequent Contributor Member # 5831 posted 03 December, 2007 09:57 AM ________________________________________ All I can say is I hope he is very careful in the future. In addition he should take a younger doctor into his practice, and train him. He will have to retire sooner or later. He's already in his 70's. ________________________________________ Posts: 1042 | From: united states | Registered: Jun 2004 | IP: Logged
bettyg Frequent Contributor Member # 6147 posted 03 December, 2007 02:14 PM ________________________________________ how about writing abot the newspapers articles on dr. jones decision to date....here's mine!
I'm a 38 year CHRONIC LYME patient misdiagnosed for 34 years by 40-50 drs/specialists!
WHY did it take 34 years to diagnose me??
WHY couldn't IDSA, infectious disease drs. caught it at the beginning?
It's because I had NO RASH, NO VISIBLE TICK BITE OR EMBEDDED TICK, and NO LYME LITERATE MD IN IOWA!! To date, we have NO FULL-TIME time lyme literate mds in our entire state! We have to travel to other states like the family in question in this story!
I was initially diagnosed with mononucleosis/EPSTEIN BARR VIRUS when I was 21 in Jan. 1970!
How did a tick get to me in the dead of winter in Iowa's SUB-ZERO temps? The tick came OFF my folk's LIVE CHRISTMAS TREE!!
How can ticks get into trees? Deer brush up against them; main carrier are birds who fly up into them, and white-footed mice, squirrels, etc. that crawl up in them. Ticks crawl off animals onto the branches and wait for their next "meal" ... us!
I think it is outragious that it took this board 2 YEARS to conduct 8+ hearings!
When the hearings started, there should have been 2 only: producing evidence, and decision made on evidence!
The State medical board caused a HUGE $$$ to have been raised by us, the CHRONIC LYME PATIENTS/PARENTS of those Dr. Jones treated over the many years he CHOSE to treat lyme children while other drs. BURIED THEIR HEADS IN HE SAND AND WOULD NOT TOUCH THESE LYME CHILDREN!
I personally resent what it's done to Dr. Jones, his staff, and all lyme children/parents:
* the almost $1 million dollars out of his/our pockets;
* the additional stress of losing many things in order to pay for these hearings, and
* the stress that we lyme patients do NOT need as we struggle daily with our lyme treatments!
Recently, Dr. Brian Fallon had a review showing that long-term antibiotics DO make a diference in lyme patience in the New England Journal of Medicine.
Did the Board take this into consideration? NO !! Hog wash!
I also disagree with someone to review EACH of his cases one by one! That EXTRA DR. could be put to use as a LYME LITERATE MD and TREAT more lyme children there!!!
We only have around 12 nationwide LLMDS that will treat children! HOW SAD! Animals are treated better than we humans!
I have NO IDEA who is on the FULL BOARD to decide Dr. Jones fate on Dec. 18, but I'm asking this ... that it be EQUAL in numbers of those who believe in LONG-TERM vs. short-term antibiotics, and most IMPORTANTLY, that HALF of the board members have a direct family member with CHRONIC LYME!
Only if YOU can walk totally in our shoes, can you understand and have an intelligent discussion with us!
Remember FOOTPRINTS IN THE SAND! That has been our LLMDS in many cases carrying us when we cold not carry ourselves!
God bless all the LLMDS in USA and internationally for taking us on when no one else would attempt to get us into REMISSION! I'd like to have a quality of life at age 58; 9 years disabled/not able to work anymore, and struggling daily!
Please to the board; REJECT the proposal stated in the article above.
MODIFY it to suit the situation here! We thank you!
-------------------- info purposes only;NOT CONSIDERED MEDICAL ADVICE!Info providedshould NOT be used replacing YOUR PERSONAL MD ADVICE.SITE LINKS are provided for EASY RESEARCH.Site Info is the opinion of those WHO publish the sites;NOTnecessarily that of Betty G. ________________________________________ Posts: 12187 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged
Dr Jones is and has always been an extraordinarily "careful" physician in every positive sense of that word.
He CARES deeply about his patients and their families and he practices his medical craft with exceptional care: he listens well, he examines thoroughly, he is extremely observant, he provides hope, he is accessible, and he is tenacious in his pursuit of better health for his patients.
So, really, what kind of "careful" are you suggesting he be? To repeat, Dr Jones did NOT DO ANYTHING WRONG OR OUT OF BOUNDS.
He did NOTHING to invite the persecution he is experiencing. The medical board would be going after him regardless- their reasons for doing so have NOTHING to do with anything he did or did not do.
It seems hard for a lot of people to accept, but in the real world completely innocent people DO get persecuted upon occasion.
The fact that Dr. Jones is being relentlessly attacked does NOT mean that he is careless or guilty or any such thing.
What it does mean is that one of the world's foremost medical experts on a formidable, devastating, and epidemic disease is being methodically and ruthlessly driven out of practice simply to protect the reputations of a handful of amoral academics and the profits of a morally corrupt insurance industry.
That was always my question too.....How can doctors on the internet prescribe drugs without ever seeing a patient??? In those cases it's even more obvious that it is to sell drugs.Some people told me that the laws are different in every state. But the internet would cover every state?
The other thing someone mentioned is what about all the kids Jones has helped...the lives he has saved?? It was definitely brought up at the Hearing that the child JOnes prescribed the antibiotics for was also helped. He was better when on them. Duhhhhh. It is obvious that there is an agenda....a very evil self serving agenda. ________________________________________ Posts: 679 | Registered: Oct 2002 | IP: Logged
sizzled Frequent Contributor Member # 1357 posted 04 December, 2007 05:53 AM ________________________________________ Is there a way to send this entire thread to the Hartford Courant?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Tracy9- I agree with you- Dr. Zemel should be held accountable for not diagnosing your son properly. Medical boards should not be going after our LLMDs! We as parents have to take a stand up against the docs who are missing the diagnosing and dismissing it - robbing our children of their childhoods and propelling them into chronic disease. If I were you I would hold that Dr. Z truly accountable. Once many docs have law suits on them for not diagnosing Lyme then you will see the tide turn. Bring these docs to the medical boards not the docs that are saving our kids!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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