After 3,000 pages of testimony and nine hearings that stretched out for more than a year, a Connecticut panel finally retired Thursday to determine whether Dr. Charles Ray Jones, the controversial Lyme physician, will be allowed to continue to practice medicine in the state.
The New Haven pediatrician listened quietly to an attorney from the state Public Health Department describe how he diagnosed two Nevada children with Lyme disease, prescribed both antibiotics and recommended that a boy be home-schooled - all before he ever examined the children.
The Connecticut Medical Examining Board is expected to decide by September whether those alleged transgressions - and Jones' later decision to prescribe the two children long-term antibiotics despite little evidence the children ever had Lyme - are enough to keep the pediatrician from practicing medicine in Connecticut.
"This case isn't about Lyme," said David Tilles, attorney for the health department. Rather, he said, it is about decisions Jones made that would be medically unacceptable in the evaluation and treatment of any disease.
But the case has drawn national attention precisely because Jones regularly prescribes antibiotics for a year or longer to treat patients with a collection of symptoms called chronic Lyme disease.
On Thursday, about 10 of the more than 60 supporters of Jones who packed a small meeting room in Hartford were asked to leave to comply with fire codes.
To those supporters, Jones is a saint who has cured hundreds of patients who had been neglected and ignored by establishment doctors.
However, no rigorous study has ever shown long-term antibiotic treatments do much to benefit patients suspected of having lingering symptoms of the tick-borne disease.
Jones' attorney, Elliot Pollack, argued that science surrounding Lyme is still evolving and that no standard of care has been developed to treat people with symptoms of chronic Lyme.
"No one was hurt here," Pollack said in his closing arguments. "The kids got better."
The Department of Public Health launched the disciplinary hearing hearing after being pressured by a father involved in a custody dispute with his wife, who brought the two children to see Jones in May 2004.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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MagicAcorn
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posted
Thanks Nan for sharing this.
We can only pray now until September that the panel makes a fair decision. I'm sure Dr. Jones is relieved that the trial part of this ordeal is over.
Looks like it will be a long hot summer for him.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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CaliforniaLyme
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posted
he is such a good, good man!!!
-------------------- 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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Beverly
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posted
Thank you for posting this Nan. Yes ditto!!! he is such a truly good man. It's heartbreaking what they are putting him through. I will be praying too Magic...
Posts: 6641 | From Michigan | Registered: Jun 2001
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sizzled
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posted
"This case isn't about Lyme," said David Tilles, attorney for the health department. Rather, he said, it is about decisions Jones made that would be medically unacceptable in the evaluation and treatment of any disease."
Oh, but it is 'acceptable' to dx pts. OVER THE PHONE without ever seeing them with the NO LYME DX!!!!!!
I know people who have been denied treatment for Lyme this way!
Had they been properly treated, they may have avoided being disabled now!
DO NO HARM!!!
Posts: 4258 | From over there | Registered: Jul 2001
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Areneli
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posted
Also read comments below the article.
Add your own if you wish.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Marnie
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posted
Treating a child over the phone without seeing him/her first can get any doctor in trouble.
That was a mistake.
I personally have been able to talk a doctor into over the phone abx...it is a matter of trust, having met the patient (me) on many prior occasions over years, knowing that the patient (me) is responsible and won't misuse this privilege.
You all missed this which I posted a few days ago:
"Lactam antibiotics can reduce glutamate toxicity in models of CNS disease by increasing the expression of the glutamate transporter, GLT-1."
Bb DOES indeed upregulate glutamate and downregulate acetylcholine (glutamate way up, acetylcholine down).
AND...many other abx. DO indeed alter TNF alpha levels too (lower, reduce inflammation).
Sooo while abx. treat SYMPTOMS via lowering glutamate and/or lowering TNF alpha and this truly gives RELIEF...they
DO NOT CURE lyme. They do NOT destroy Bb. Which is what the ISDA doctors know.
And yet...they offered you all no alternative Rx relief/suggestions...which is where
THEY MADE A MISTAKE.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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bettyg
Unregistered
posted
thanks nan for the article!
yes, it's going to be a long-drawn out summer for his decision to arrive.
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Greatcod
Unregistered
posted
Marnie wrote "DO NOT CURE lyme. They do NOT destroy Bb. Which is what the ISDA doctors know."
Well, the IDSA guidelines argue differently-they state there is no evidence of continuing infection after ABX, based on WBs and PCRs. There has been no study run to confirm their SPECULATION that the the ABX reduce symptoms because of their anti-inflamatory capacities, nor have they offered any evidence whatsoever of why the immune response, the inflamation, continues after what they call sufficient ABX. In fact, the Klempner-Tufts study found no difference between subjects and controls after IV ABX treatment. If there was a reduction in symptoms because of the ABX's anti-inflamatory properties, they would have shown up, would they not? It is probable that Bb requires extensive ABX to seriously reduce the infectious load. THe necessity of long treatment may be due to Bb's capacity to evade treatment by going deeper into tissue, or assuming alternate forms. It is highly probable that most Bb are destroyed, and the immunse system quiets. Some time later, the few sequesterd Bb repoduce to a level where the immmune sytem kicks in, and symptoms return. Bb is the most complex of the bacterias, and may very well have new and unstudied properties. I think the anti-inflamatory arguement is quite shallow.
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heiwalove
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posted
that article makes me angry.
dr. jones is an incredible and dedicated healer. i'm so glad this part of the ordeal is finally over for him.
((and marnie, though i appreciate all the research you've done into lyme disease without ever being afflicted with it yourself, i think i speak for at least a few other people when i say those of us with no/little knowledge of biological science have no idea what you're talking about. (and my neuro lyme symptoms are in remission, for the most part. i can't imagine how impossible your posts must seem to people battling severe brain fog/cognitive impairment.) ))
posted
I heard, and correct me if I'm wrong, that Dr. Jones did NOT prescribe long term antibiotics to the children without seeing them. He refilled a short term antibiotic for strep throat that another dr. in Nevada originally prescribed.
This is more of a domestic dispute case than anything.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
it's absolutely a case regarding domestic dispute. it is also a case that is based on smoke-and-mirrors, and a case that should never have gone beyond the administrative level. for very fundamental reasons, medical neglect or abuse should have been discounted during the process before hearing. the advancement of a case that should not have been one has created the very basic elements of a kangaroo court. fundamentally, the charges have no merit.
the child(ren) got better, the phone script was for an acute infection (not lyme)..documented, and jones had extended due to previously failed treatment. the child's mother is a well-seasoned ER nurse.
he also advised that the child, with several debilitating symptoms at the time, go on home-tutoring while being evaluated and cared for.
not to have taken these steps would have been neglectful. period.
the origional reporter was a disgruntled spouse who is visibly disturbed and unstable, with motive against the mom.
many of the players who have advanced these proceedings have previous medico-legal-political bias.
my biggest concern is that the lyme community is not organizing effectively in defence of our very basic right to appropriate medical care, by not supporting jones effectively enough.
this support is needed no matter what your understanding, circumstances or chosen treatment of the disease. i seriously doubt this membership group fully "gets" that.
this is pretty much it, folks. let this boat sink, and i think you can say goodbye to most of our advances over the past decade.
we won't be talking cure, we'll be back to arguing Bb's nature and existance.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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sizzled
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posted
Mo, thank-you for clarifying the entire situation.
Posts: 4258 | From over there | Registered: Jul 2001
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TerryK
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posted
Does anyone know what happened in the final hearing?
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
I can sort of follow Marnies posts and I do appreciate that she goes to the trouble of putting her research up for us to see.
I don't agree that abx don't kill lyme and that we only get symptomatic relief or at least I don't think there is any real evidence to suggest it is true - that is my opinion - but I'm glad to hear other opinions so that I can ponder the possibilities.
And back to Dr. Jones - I'm praying for him and all of us that this does not go badly and a favorable decision is made.
Kayda - my understanding is the same as yours from past detailed posts on this board. I haven't seen anything official though and I wonder why reporters keep confusing the issues and officials keep issuing misleading statements? Why are they getting away with misrepresenting the situation? As others have mentioned in previous posts, it seems that we need a better PR machine.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Terry...once again...
Bb enters the cells that line our blood vessels (endothelial cells).
It attaches to our DNA inside the cells.
The cell nucleus sends out an alarm.
That alarm is called NFkB...or NFkBIKKA...different sources use different letters...the same.
NFkBIKKA -> TNF alpha, Il 1B, etc. which are protective, but make Bb really happy.
TNF alpha opens Na epithelial cell channels. In goes sodium, out goes potassium.
Bb needs NaCl for its motility.
I wish it was as simple as inactivating TNF alpha via the
autoimmune drug, Humira.
Then maybe my sis would have been cured after 3 years of nonstop abx. did not work...and yes, she was also treated for babesia...several rounds.
Did Humira work? No, but to a degree she FELT better while her joints continued to disintegrate.
Then they added Fosamax and finally Methotrexate.
Successful? If it was I wouldn't still be here.
This doesn't work.
We must INactivate NFkBIKKA in ways that don't benefit Bb. Tricky, but possible.
[ 04. June 2007, 09:16 AM: Message edited by: Marnie ]
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Many thanks to everyone who attended the hearings or helped someone else to do so.
Mo, Thanks so much for your assessment. What do you see as the leading ways of supporting Dr. Jones and our right to adequate treatment now that the public hearing is apparently completed?
-------------------- "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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posted
I would really like to know....
Posts: 983 | From The sky | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
The article said these heaing are not about lyme but I sooooooo beg to differ. It is all about lyme & trying to run the LLMD's out of practive. It may have started out as a domestic dispute but they took that & went running with it.
It happened to Dr. J in NC & just about everywhere. Pretty soon the patients as well as the LLMD's will have to go under ground or in back alles. These are witch hunts plan & simple. They want us & the doctors who treat us to disapear.
Dr. J deserves better than this for the thousands of kids & people he has helped. And we as patients deserve better than the present persecution that exists.
Am really mad & sad he had to go threw this for a whole year & now has to wait out the summer. It's just criminal.
I'll be praying for him & hope he can keep his strength up.
Dr. J we love you & our prayers & hearts are with you
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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northstar
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posted
The article said these heaing are not about lyme but I sooooooo beg to differ.
I second that. The lawyer was trying to sway the media by changing the topic.
If it was not about lyme, then why did the majority of the inquisition sessions involve Shapiro (or whomever that was), lyme diagnosis, lyme specialists, etc. ?
If it was just about the zith or the discussion of the benefits of homeschooling, then there would be school psychologists, counselors, special ed instructors, teachers, and perhaps respiratory/pulmonary type (sp?)physicians there.
If it was just about the zith, then the discussion was over the day the testimony was in.
If it was just about the schooling, the discussion was over the day the testimony was in.
The actual dx itself has no bearing on the above 2 charges. The act of diagnosing over the phone was what was supposed to be called into question. And that was answered quickly and clearly: no.
If this case loses on those grounds, then no physician can consult with another physician on the phone, ever.
Nor can a physician ever consult with school personnel when there are problems, ever.
Period.
They had better think twice about what they do, because of precedents (sp?).
Honest to pete!
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
My prayers are with him and all his patients that will be affected by this.
On a side note, I was one of those people who were given abx when first diagnosed...however, just a short 30 day period.
4 years later, my symptoms were back and were worse. Now, did those abx not work? I would have to say yes they did work. Would they have worked better if on them longer...I would have to say yes to that also.
Lyme hides and if not given abx long enough that your body needs (3months or 5 years) you just won't get better.
Now here I am, with six kiddos, not able to walk or even do the dishes because it's just too painful and I can't find a doctor to treat me.
I just had to put my two cents in on that subject of abx!
And because I am one of those neuro-lymies...Marnie,those emails just look like blah, blah, blah, blah, blah to me.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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Boomerang
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Member # 7979
posted
This is just ridiculous. I can't count the number of people I know who call doctors and get antibiotics for "sinus infections"......with no problem.
Yet, this doctor is being prosecuted? Absurd.
God Bless Dr. Jones.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Greatcod
Unregistered
posted
Its worse than redicilous, its criminal. An abuse of the state's Medical Boards powers to destroy a Lyme doctor. Here's an excerpt from a NYT story today about doctors behaving badly. Look at the punishment this guy got for killing people, and think about the charges against Dr. Jones. "A decade ago the Minnesota Board of Medical Practice accused Dr. Faruk Abuzzahab of a ``reckless, if not willful, disregard'' for the welfare of 46 patients, 5 of whom died in his care or shortly afterward. The board suspended his license for seven months and restricted it for two years after that."
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Marnie
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posted
Allison:
"And because I am one of those neuro-lymies...Marnie,those emails just look like blah, blah, blah, blah, blah to me."
What emails? I do not remember emails between us.
If you do not want to LEARN about what Bb is doing to your body and trying to UNDERSTAND what is happening in order to best attack this horrendous infection...
That's okay!
Just SOB...scroll on by.
I DO understand that neuro lyme is a HUGE problem and makes it very very difficult for you to think clearly, for you to understand, to learn.
It makes my job a LOT harder.
This is BECAUSE in lyme, the brain glutamate level (one neurotransmitter) is thru the roof and acetylcholine (another neurotransmitter) is way too low.
In your body...acetylcholine is too low and norepinephrine -> epinephrine (adrenaline) is too high.
They are out of balance BECAUSE of the infection.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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I can't speak for her but I think Allison meant your "posts", not emails.
The information you are providing is greatly appreciated. Please, keep providing it. Just be aware that those of us in brain fog will not be able to understand it. The biochemical mechanisms at work that you just described makes this impossible for many of us on a good day, let alone on a bad day. It doesn't mean that we don't WANT to learn, it just means that it goes over our heads. It certainly doesn't mean that we are asking for patronising and facetious replies back from you. (Most of us have already been treated this way by scores of doctors...we do not need it from the sister of a fellow Lymey)
We get it-You are smart.... and those of us with foggy brains are not when our acetylcholine is low and our glutamate is high because of the Lymes.
Did I get it right? Posts: 69 | From Wisconsin | Registered: Apr 2007
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