posted
I got there around 9:30 and Dr. P was in the hotseat. He was being asked by the prosecution if negative blood tests rule out lyme disease diagnosis.
"No"...he said that the testing was only used to support the diagnosis as there is currently no gold standard accurate test.
He said that he has sent the same blood to several labs including stonybrook and igenex and three different results. This could be due to different strains of borrilia being tested.
Someone from the board asked if Igenex was more likely to give a positive test compared to the CDC.
Dr. P said that he didn't want to be difficult but the question isn't relevant since the CDC doesn't have a test. But that the critera used by the CDC is different from Igenex and he really didn't know if one would be more likely to give a positive or not...
Prosecution asked what is the value of taking a patient history and physicial exam...to get a diagnosis.
Dr. P said very important and gave an articulated discussion on why...He was aked if he knew the charges against Dr. Jones and he said no..
Board member said that Dr. J had diagnosed a patient over the phone without a physical examination and kept a patient on antibiotics for an long time without follow up...
They asked Dr. P, "Would you do this in your practise?"
Dr. P said that he personally may not have done this but understands that both he and Dr. Jones are inundated with calls from desperate patients from all over the country and world...
He said he knows telemedicine is going on all around us but doesn't know the laws about that...(neither did the board member).
(We later learned that Dr. J did a presumptive diagnosis for the kids over the phone but did a full physicial when the patients traveled w/their mother to New Haven....they didn't follow up in person for a year after because their oral abx treatment was going well and mom was a competent ER nurse who did the follow-up since no local doc could be found in Nevada)
There was much discussion about the value of testing and getting a seropositie test...Board asked if Igenex comes back negative can a person still have lyme?
"Yes"...He says that you need to look at band but 0 bands wouldn't support a lyme diagnosis...although he has seen patients who have had bulls eye rash, positive PCR, and all the symptoms come up with no bands ...
He said things are evolving quickly with lyme and other markers are being looked at ...he is particularly fond of the CD57 test....it will be depressed in long term lyme disease but not other chronic illnesses.
He doesn't encourage testing of healthy people, there is no data supporting treating asymptomatic lyme...(His goal is to treat till symptom free)
3% of people will test pos for babs on Cape Cod.
When asked about what symptoms are lyme he said headache myalgia fatigue but not the kind we all get...then he said like right now I'm kinda tired and starting to get a headache....(everyone laughed)
He said theis is a chronic multisytem illness.
Given the facts of a neg serology on very ill patients, diagnostic trial of abx to produce herx will confirm the diagnosis of a spiroketal parasitic infection... since teenagers get years of abx for acne, the risks of this far outweight the benefits.
Dr. Jones was somber, intelligent and his testimony was compelling...I'll see if I remember others help me out...
He said that he had been treating lyme for 30 years and helped over 10 thousand children. He believes this trial came about due to a father wanting to inflict pain on his wife during divorce proceedings.
He believes Dr. Shapiro wants to get him and other lyme docs out of practice because he and his collegues need to purpetuate the outdated and harmful guidelines put forward by the IDSA.
He stated that even the CDC recognises lyme as a clinical diagnosis and if 10,000 patients doesn't give him "clical" expertise than what does.
He feels that since Dr. Raxlen was successful in his lyme trial years ago then he should be to since lyme is an evolving disease and treatment and testing were constantly changing.
I was in tears watching this poor doc...I think the board was riveted to their chairs as he spoke eloquently, calmly and dead serious....
I have to go now nurse is here but hope others chime in.
Blessings, Kim
I have to run right now but will
-------------------- We are spiritual beings on a human journey...
posted
The more time that goes by, the more concerned I am becomming about what happened at the hearing yesterday. I must admit that some negative anticipation has set in.
Am I not looking in the right place for information about what took place, or has there just been no report from anyone who attended?
If anyone has any information at all, I am sure that there are others, besides myself, who would like to know how things went for our dear Dr. Jones.
Please post here and let me know where I can look for information.
posted
Thanks for the report. We were all sitting on the edge of our chairs waiting for this.
If this testimony and previous hearing testimony does not convince this panel and the state board that dragging Dr. Jones up on charges is a travesty of justice, then we will know the whole thing is corrupt and the people on the panel and on the board are evil cretins. Sorry, I am just beside myself with anger. I guess we will have to wait and see. However, there is no waiting and seeing on Shapiro. He is a worthless human being.
Posts: 8430 | From Not available | Registered: Oct 2000
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Kim
So many were waiting to hear word.....thank you, Kim.
How exhausting this must have been for Dr. J!!!!
I will keep checking to see if others join you, Kim, with posts about his day.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
It's a lynching.
He needs your SUPPORT.
Go to the Hearings and/or contribute to his legal defense fund.
Posts: 4258 | From over there | Registered: Jul 2001
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posted
Given the facts of a neg serology on very ill patients, diagnostic trial of abx to produce herx will confirm the diagnosis of a spiroketal parasitic infection... since teenagers get years of abx for acne, the risks of this far outweight the benefits.
I messed this up....the benefits of doing an abx trial to produce a herx far outweigh the risks....
Also, there were about 45 people in attendance, two children. I think the case will come down to this...Is it legal to prescribe abx over the phone in the state of CT...(even though he did see the patients a month or so later then again a year later when they had recovered)
The medical outcome was excellent for both kids they were able to go back to school and make friends again...You would think docs would be on trial for killing people not making them better!!
This is a huge waste of everyone's time and money...not to mention the poor kids who aren't being seen by Dr. J since he had to do this dog and pony show...
Just remembered another thing... Dr. Jones was being questioned about the appropriate use of amoxicillin to treat neuro lyme-- he was asked "how many children have you used amoxicillin on to treat neuro lyme???" He answered four thousand....
Love this man and I pray he is allowed to continue his work...
-------------------- We are spiritual beings on a human journey...
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thankyou Kim so much for relaying some news.
I do pray He will be allowed to continue to help children with lyme.
I worry about (((Dr. J.)))) & the stress toll this hearing must be taking on him. They should be giving him a noble prize instead of a lynching.
Now you get some much needed rest and take good care of yourself.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Kim, God bless you for posting on how yesterday went for the rest of us across the USA.
I'm glad Jones delivered a very compelling testimony.
Only 45 there! that's terrible! GLAD 2 KIDS WERE THERE & DID THEY TESTIFY? Bettyg
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thank you so much, Kim! I am in awe of your reporting skills!
May I please copy your report and send it to the people on my Ld-E-list? They are all waiting for information on Dr. J's hearing.
He is so brilliant, calm and eloquent in the face of all this nonsense. My heart really goes out to him.
I hope people will be inspired by your report to contribute to the defense fund.
[quoting Dr. J's recent letter posted here]
"I NEED YOUR MONETARY SUPPORT NOW in order to continue to fight this battle and win. At this time, I need to raise $50,000, which would carry us through two more hearings and hopefully the situation will end at that point.
Please help me fight this battle by donating money to my Legal Defense Fund. I have appointed George Heath III as the guardian of my Fund and ALL checks from this point forward are to be sent directly to him. Checks are to be written as follows:
Charles Ray Jones, MD Legal Defense Fund c/o George Heath III 26 Fairlawn Drive Wallingford, CT 06492
(in the check memo field please place the word "gift")"
posted
Dana, Thanks, I am pretty burned out. I could only stay till 2:30 then to my daughter's game and in bed for today...
Betty, the kids didn't testify...only dr. J and dr. P. It was rough for them though tryin to be well behaved and quiet...
Ann, you can copy this but you may need to edit some of my goofs...
I wish I knew more here from lymenet who may have been there...I went alone cause I had to do several things in the afternoon.
I'm thinking about writing an article for the local papers or calling the TV stations to let people know what is happening with this trial...
What are your thoughts on this? I would like to see his final hearing bursting with supporters. People need to know what misery goes on in our legislative offices.
-------------------- We are spiritual beings on a human journey...
posted
If we could be sure of the reports that would appear in the media, it might be a good idea. However, you never know what they will say, perhaps even things that hurt the cause. Might want to run this by someone more politically astute and connected to the case.
Posts: 8430 | From Not available | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thank you so much,Kim. Any tiny mistakes you made only add to the realism and charm of your report.
I agree with Lou about doing anything with the media. You have to be very careful and be sure it is a good idea especially with Dr. J. and the lawyers handling his case.
If it were my choice, I would say "go for it" because you express yourself so well!
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I agree we need an overflowing crowd for the last hearing date.
I am surprised that the state support groups have not organized bus or rail transportation.
I will contact our local Nat Cap organization to check their plans.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I was able to witness much of the hearing for the Dr. J in NC. In the end, it all came down to the law in NC.
Although the board heard lots of testimony from many people who were helped greatly by Dr. J's treatment, as well as testimony by THE Dr. Fallon and THE Dr. Phillips, they discounted it all.
In NC it is illegal to practice outside the accepted standard of care used by a majority of the physicians in the state. Therefore, since we have several large teaching hospitals (Duke, Wake Forest, UNC) who constantly preach that there is no Lyme in the state and Lyme can be treated with 30 days of antibiotics, that is THE standard of care in NC. The board members had to follow the law, plain and simple.
I urge you all to research the law and try to find a way to use it in your favor. It may be your only hope.
Posts: 2275 | From NC | Registered: Oct 2000
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I've only posted a couple times, but check in periodically. But I just have to say this thread has brought me to tears.
After a long search, I found a local LLMD, and then after a wait, I started seeing this MD. Great guy, now under heat from BC/BS, being threatened to be dropped as a provider. He is now no longer taking any new Lyme/Fibro/CFS patients at all, no exceptions. I may have been one of the last, and I didn't mention Lyme when I switched to him (sorry, sneaky but I was desperate).
He isn't giving up on Lyme, he's just a regular doc with a young family to raise in a "non-endemic" area saying "HEY we have Lyme here!" and getting heat for it. I know he has something in the works about getting some local research done and some education, but that is long term and won't help so many people in our region that need it right now. What a shame that a good doctor has to make these kinds of choices.
Now, when I say won't take any new pt's -no exceptions ... that means not even my kids. While that is so very disappointing and sad, I understand. Who, knowing how hard this sneaky bacteria is to treat, would want to jeapordize their kind doctor, his practice and all the people that depend on him.
That said, it was to Dr. J that I turned this summer. In the midst of all that he is going through, he and his super kind staff are still out there trying to help us desperate parents with few if any choices. We have our first appt w/ the NP in a few weeks. Both boys have some positve WB bands, but neither are CDC positive. My oldest (11yrs) has JRA, before that it was ITP, any many many other things of a more vague nature. My youngest (7yrs) is starting to have ADD type problems and has had numerous "vague" problems since birth, like chronic ear infections, colic, "growing pains" ... you know ... all the kinds of things that singly don't mean much but together can create a picture. It is shocking just how few MDs are willing to see that picture. Dr. J is one of few that sees the picture. He is a hero.
I beg of those of you that know, please keep us posted on Dr. J. I haven't wanted to ask when I talk to his staff, I guess I feel that they have enough stress without constant questions about things that aren't under their control. But, we have these appt's, we're working with Angel Flights to help get us there, taking time off, and just plain worried on so many levels.
Many many prayers to Dr. J.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Actually I have been surprised by the lack of media coverage of the trial. The North Carolina trial was covered by several TV stations and it seemed like just about every newspaper in North Carolina picked up the AP or some other news feed. A google search does not bring up any results at all for the current hearing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Kim, many thanks for your post, and for your energy in attending and taking notes. Yay, Dr. P and Dr. J!
Associated Press in CT is aware of the Dr. J hearings. Why they haven't reported, especially in the wake of the NC hearings, I have no idea. Perhaps they are waiting for the results.
You might want to try the Ridgefield Press and their satellite papers in Wilton and the surrounding towns. Their top people write well, and they have done good articles on Lyme in the past (but go to Ridgefield for the best people, IMHO). They will probably want a local angle -- a family with kids who see Dr. J, for example.
You can contact the Ridgefield Lyme Disease Task Force and speak to them about it. I have their contact info if you need it -- PM me.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Michelle M
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Member # 7200
posted
Hurray, Human. Thanks for tuning us in. What a great job. I was there with you in spirit!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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My best friend offered her services to Dr. J many months ago.
She was a press secretary for two diff congresswomen and worked in media (TV news) as well as media relations. Has written many an op ed piece.
They never returned her calls.
So, possibly publicity is not something they want to pursue?
Just some thoughts,
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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posted
I should have said "offered to volunteer her services" ...
having seen my struggles
(excuse me while I go look for my brain)
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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posted
Was the help offered directly to Dr Jones, to his staff, to his attorney,... maybe the message never got to the right people?
Posts: 758 | From now TX | Registered: Mar 2001
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bettyg
Unregistered
posted
Hayley, thanks for telling us about your friend offering her services.
MJ, good point; one never knows IF messages get to those intended to be. We're all human and things get really busy meeting deadlines & answering phone calls, etc.
Bettyg, former secretary meeting timeline crunches for those waiting until the last minute to get their things to me to be typed!
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posted
If I remember correctly, she was in touch w/ his attny's, but don't hold me to that. At the time she was living in DC.
Linda here in Knox is the one that alerted me that there might be a need.
I will mention it again when I talk to his office. It is possible that Dr J never knew of the offer.
I don't really know much about how he's dealing with all this, if he's leaving much up to his lawyers, etc.
She's in CA now and is an attny (waiting to see if she passed the CA bar), not sure how much she could do from there.
However, she is the QUEEN of connections and networking. And I know she would do what she could ... she is after all, my son's godmother and loves them fiercely.
If you all think I should pursue this, esp those that are more familiar w/ case, let me know.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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bettyg
Unregistered
posted
Hayley, please copy this thread and look for a post by ELLEN LUBA in medical, activism, etc.
Post the copied link to one of her posts, and she can PM you back IF she thinks YOU should pursue this. Thanks so much for your very kind offer to help Dr. Jones. Bettyg
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I agree with Lou that media coverage can backfire. But media coverage as a human interest story about patients treated by Dr. Jones. would be very helpful.
At any rate, it's possible that your friend didn't get a response from Dr. Jones because he is just too overwhelmed by trying to see all his patients and prepare his legal case at the same time.
Could you ask your friend to send me the information about her offer, and I'll see what I can do. An offer to get publicity is important for Dr. J and his legal team to know about. Thanks, Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
Humanbeing, Thanks so much for your excellent summary of the hearing.
Sandy B. sat with her laptop at the hearing and will put out a detailed summary as well. I'll send it out as soon as I get it.
I can't swear that I heard it right , but I'm pretty sure that the medicine Dr. Jones prescribed over the telephone before seeing the patient was ONLY a renewal of five days of zithromax that a local physician had given him. And this wasn't even for Lyme. It was for a paroxysmal cough that didn't go away with the first five day round.
AND the other heinous thing he did was to intervene by calling the school to work out problems that the kid was having therel. How dare he break the medical code that says you should do the least amount of work and leave patients twisting in the wind. How dare he be a decent human being!!
I kept asking people around me whether I heard it right. THIS is the big deal about his treating before he saw the kid? For THIS they bring Dr. Jones up on charges???
Anyway, I know that I should wait for the detailed summary from Sandy before mouthing off like this - just in case I did get confused. But I don't seem to be able to write about the hearing without getting really mad.
I hope that many of us will show up at the next hearing on Sept. 28th at 10 am in the Legislative Office Building in Hartford. It will be about a three hour session, and the mother and kids that Dr. Jones treated will testify. Remember that they are very supportive of Dr. Jones. (The complaint about Dr. Jones was made by the kids' father as part of a custody dispute).
THe opinions in this post are just my own. I haven't spoken to Dr. Jones or attorneys in the case. Just a disclaimer, since Dr. Jones had said I would be a spokesperson. Thanks, Ellen T
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Trumped up charges,ignoring the truth...
However,'they' will have a hard time condemning Dr. J for any medical practices.
I believe they will drag this on...and on...and on...thus, financially and emotionally and physically draining the dear man.
Posts: 4258 | From over there | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Ellen,
I am hearing that the 28th is postponed, trying to find a date where the mother and the panel can get together. Is that correct?
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Contact info has been PM'd to you. With a postponement, chances are increased that Ellia can really help.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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posted
Just wanted to say, have talked w/ Dr J's office and have contact info for his attnys and will be calling them personally w/ offer of media help.
Well wishes, Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Any news about a postponement?
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of connections and networking. And I know she would do what she could ... she is after all, my son's godmother and loves them fiercely.
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