Topic: Dr Jones Hearing- January 25, 2007- Please share info with others
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Please be there for Dr. Jones and the kids! It is important.
Please pass this information along to everyone. Thank you!
Dr. Jones next hearing-
THURSDAY, January 25, 2007
University of CT Health Center 263 Farmington Avenue Farmington, CT In the Keller Auditorium 9:00 AM
From Bradley International Airport Follow Route 20 to I-91 South to I-84 West in Hartford. Follow I-84 West about 7 miles to Exit 39 which is after 39A. Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.
From Farmington Center Stay on Route 4 East/Farmington Avenue. As you drive up the hill toward I-84, stay in the right lane and follow the signs as Route 4 East/Farmington Avenue loops to the right and crosses the I-84 access road. At the fourth traffic light, turn right to enter the Health Center campus.
From West Hartford Center Stay on Farmington Avenue/Route 4 West. The Health Center is about 3.3 miles on the left.
From Route 44 Canton/Avon Proceed on Route 44 eastbound through Avon. Turn right onto Route 10 South/Waterville Road. Turn left onto Talcott Notch Road and continue to Farmington Avenue/Route 4 West. Turn right; the Health Center is a 1/4 mile on the left.
From I-84 Take Exit 39 (if coming from I-84 West, Exit 39 is after 39A). Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.
From Northbound Route 9 Take Exit 32 (left exit) onto I-84 West and stay in the right lane. Take Exit 39 (first exit). Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.
To Return to Route 9 From the Farmington Avenue entrance on the Lower Campus, take a left onto Route 4 West/Farmington Avenue. At the second light, take a left onto South Road. At the first stop sign, turn right and follow the signs to Route 9 South (you will enter I-84 East briefly prior to exiting onto Route 9 South).
To Return to I-84 East or West From the Farmington Avenue entrance on the Lower Campus, take a left onto Route 4 West/Farmington Avenue. At the third light, take a left towards the highway entrance ramps and follow the signs staying right for I-84 West or staying left for I-84 East.
Parking
Observers will have to park in Shuttle Lot 3. Once they turn into the Health Center from Farmington Avenue, take the 1st left and then take 2nd left to Shuttle Lot 3. There will be a shuttle bus providing transportation to the Main Building.
Keller Auditorium
Come in through Main Entrance into the lobby. On the left past the volunteer desk there are escalators. Take these to the ground floor. Turn around and Keller Auditorium will be directly in front of you.
posted
Do you happen to know if there are provisions on the shuttle or in the building for persons in wheelchairs or with walkers? I have started thinking about these things for public gatherings
because I know of so many who have to use these for mobility and find that an awful lot of places still are not upgrading their access for the mobile-challenged.
Just thought I'd ask just to make trouble Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey little girl..
Isn't it past your bed time?
Actually.. good question. Maybe call them? I don't know the answer. If you call.. can you let us all know? I am concerned about the distance.. because walking far some days.. or even NOT far.. is near impossible for me.
They MAY even have a handicap parking area closer? Don't know.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
up
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks Ping... I like that name.
And it rhymes with ding a ling.
SORRY!!!
Here are more directions to add to the list.. in case this is your route..
From Northbound I-91 Take Exit 22 onto Route 9 Take Exit 32 (left exit) onto I-84 West and stay in the right lane. Take Exit 39 (first exit). Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.
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From Northbound I-91 Take Exit 22 onto Route 9 Take Exit 32 (left exit) onto I-84 West and stay in the right lane. Take Exit 39 (first exit). Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I'm planning on it, thanks for the info, TC.
If anyone is coming from my neck 'o the woods, figure on about 3 hours from the Maine/New Hampshire border.
Take I-95 South to Exit 59, I-495 South to Exit 22, I-90 West to Exit 9, I-84 West to Exit 39 (Route 4) toward Farmington, Turn right onto Farmington Avenue/Route 4
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Tincup
Honored Contributor (10K+ posts)
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posted
I mentioned to someone I was going to CT and asked if they would like to go. I didn't say why I was going.
They said maybe.. if they could get a lobster.
I said what?
They said "a lobster".
I said why do you want to get a lobster in CT? (They don't even LIKE lobster)
They said because they are famous for their lobsters.
I said I thought MAINE was famous for their lobsters.. not CT.
They said.. well same thing.. they are both in New England.
So PLEASE tell me.. is CT famous for it's lobsters? Or am I dealing with another southerner who's just never been north of the Mason Dixon line?
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Lived in CT a long time & yes, they do have great lobsters.Specially along the shore. Farther Inland not as much but Mystic/stonnington area fab! Thats where some of the lobsters boats come in with them. In stonnington we used to be able to buy em right off the docks
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
CT Lobsters....you mean the creatures in that state that pinch peoples' health, and pocketbooks, and futures, and are currently trying to pinch their children's LLMD?
-------------------- "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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sizzled
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posted
Ah, FFWW, lobster....steamed and drowned in butter!
"Look! There's a lobster loose! Quick....cover yourselves in butter and bring lemons, just in case!"
Okay....I need more sleep.....! Posts: 4258 | From over there | Registered: Jul 2001
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posted
Man, if we could just crack those hard shells and bring a little humanity to their table.
-------------------- "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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shazdancer
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posted
LOL, I've lived in CT, and am now in Maine. You can get lobster in CT, and it will be fresher than lobster in, say, Arizona. But if you want Lobster (or as the natives up here call it, Lawbstah), Maine is where you want to be.
But as for me, I'd rather roast me some DUCK just about now....
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Tincup
Honored Contributor (10K+ posts)
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posted
HA!
Funny you mentioned Arizona. I am a seafood lover from WAY back.. and believe it or not.. and I worked in several fancy "lobster houses" and KNOW my lobsters.. but the best lobster I ever had.. after coming out of the mountains following 2 weeks of camping.. was in New Mexico!!!
We were trying to find taco's.. but it was late and no where else was open!
posted
Please be in Farmington for the hearing this Thursday the 25th or have someone go in your place!
-------------------- "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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A taxi stand with waiting taxis is also at the Hartford Amtrak/Busline depot.
-------------------- "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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trueblue
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posted
^up^
I was just going to boost the topic but now feel like having lobster. yummmm...
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Hi all, I'm going with my son (taking my son out of school to attend). I bought lime-colored shirts for us to wear to show solidarity with Dr. Jones. Just wondering if this is appropriate? I'm new to this political stuff.
Allie in RI
Posts: 300 | From Northeast | Registered: Dec 2006
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shazdancer
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The people in touch with Dr. J and his lawyer are still saying they want us to behave. But i think a T-shirt or two wouldn't hurt. Heck, they KNOW we're there because we are supporting DR. J.
Thanks, Allie, for coming. My boy will need to be home this time, but I will be there for the morning.
On behalf of my boy and myself, thanks to all who are making the trip.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
I'm wondering whether standing in a choice spot on campus at lunchtime with signs about Dr. Jones and the Guidelines would be ok?
Thanks for getting involved, Allie!
-------------------- "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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bettyg
Unregistered
posted
today's the day; hope you have a great turnout! anyone close to dr. jones;
give him an EXTRA BIG HUG/KISS FROM US ALL UNABLE TO TRAVEL THERE!
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posted
at peak attendance time, there were only 40 people there. not good folks.
today was cross examination of dr. jones and testimony/crosses/redirects ect. of dr. leo shea, lyme literate neuropsychologist with stellar credentials.
i have notes and will write more later. like previous hearings, the testimonies and information as well as legal expertise from jones' team was excellent. on legal merit, as well as medical merit, this case would be won by jones hands down..
the board, however, seems dauntingly single minded, and that is extremely troublesome.
this board is not required to operate under the same standards as other legal arenas, the abscence of due process and burden of proof / as well as the absence of proper consideration and weight of what has been entered seems considerable.
a show from the public, through ATTENDANCE and good media coverage is more critical than ever. shining a light on it is critical, because then it is harder for them to act arbitrarily.
today's turnout was nothing near what is needed.
i REALLY don't know what to think about that, at the moment it is utterly mind-boggling that we have not turned out for jones in greater numbers.
heartfelt thanks to all who did attend this and previous hearings.
the rest of you -- the next date is to be set in march. please consider going (and the consequences of NOT going) very seriously.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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shazdancer
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I am sure Mo and others will weigh in with more. I was there for the morning hours.
I counted 41 people at around 10:15.
One motion concerned the ex-husband, who wanted to testify via phone, as he felt he couldn't afford to travel in to testify live, and the accusatory attorney said there wasn't enough $$$ to fly him in. After conferring privately, the hearing panel decided that he must testify in person.
Yay! If he doesn't attend, it will be hard to rebut the mother's testimony concerning their relationship.
The attorney looked pretty embarrassed, almost ashamed about it. I'm guessing he found out what a conniving schmuck the ex really is...
At one point, the accusatory attorney mentioned that , althoug Dr. J had recommended it, the boy had not received homebound tutoring. He asked Dr. J if that surprised him. He said yes.
[It doesn't surprise ME at all! Any of us who have had to deal with accommodations knows how difficult it can be to get schools to comply. Many of us have to decide which battles to fight, and which to compromise on!]
A lot of the morning questions centered on what meds were prescribed. The attorney was trying to establish that Dr. J didn't give the right ones.
But Dr. J hung onto his assertions that his choices were made based on the children's ages, symptoms, current science, and his own experience with what works. I don't think the attorney gained any ground, although I am sure he will try on that point again.
Sleepily, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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quote:a show from the public, through ATTENDANCE and good media coverage is more critical than ever. shining a light on it is critical, because then it is harder for them to act arbitrarily.
today's turnout was nothing near what is needed.
i REALLY don't know what to think about that, at the moment it is utterly mind-boggling that we have not turned out for jones in greater numbers
The highest count I got this morning was 43 and that included Dr. Jones Staff of 4. In a room that could hold 284 it was a very poor turnout. The worst yet!
I am sure that had an effect on Dr. Jones. We always tell him how wonderful he is, and how loved and appreciated he is. From the beginning of this nightmare we told him the people would rally around him and be with him to support him through this. I really believed that. I just don't understand how this can be.
I know people are sick, the weather is cold, money is short , people have jobs etc.,but there have to be able bodied people out there whose families and friends have been impacted by this disease and helped by doctors like Dr. Jones, if not himself.
It's not only the 10,000 children he has treated but the friends and family members who have been diagnosed and treated because of that sick child.
I know because I, and at least 6 family members, were among that group because Dr. Jones stepped forward to treat my child 6 years ago. He saved her life.
Make no mistake. Without Dr. Jones lives will be lost. LLMD's will become a rare commodity. Dr. Jones is not fighting this battle for himself. He's fighting it for all of us.
If there is anyone who can and is willing to stand in for you, please send them to the next hearing. It won't be until March. Spring in Hartford is a pretty site!
Maybe I can dig up some CT Lobsters!
Posts: 733 | From CT | Registered: Oct 2000
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posted
how many lobsters will it take to get 500 people at the next hearing?
let me know and i'll rent a boat and some cages.
just teasing.... sort of.
please, folks - make good on your appreciation for one of the only doctors in the world treating children with CHRONIC tbd's long term and to efficacy.. if we don't do this, you can be sure there is no one else who will.
believe me when i say that going was VERY difficult for me. i could give you our sad story, but there is no point in that. just know it was NOT BY ANY MEANS easy. but, i would not have wished to be anywhere else today.
this is the obligation of ALL Lyme patients. whether you have chidren treated by jones, or are even if you are a Lyme sufferer yourself is irrelavent.
if you are privy to the atrocities, the discriminatory denial of care of this insideous disease -- anyone who has become aware -- is on the hook.
40 people??????????!!! this is inexplicable to me. not to mention jones and his team insisted on a venue that would accommodate hundreds. the chirping crickets did not help things today.
we all must act, or each who do not act must be willing to take personal responsibility for what we are witnessing;
blatant denial children's civil right to appropriate medical care.
i know there are thousands who 'get it'.
well -- you all need to 'get there' - to the hearings - considering the current circumstances anything less is saying you don't care what happens.
it's as simple as that.
mo
[ 26. January 2007, 01:50 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
thank you all for an update on today's hearing.
40 people; oh no! i'm sorry to read that. do they have a lyme support group in this city or county? at least those folks would not have had major expenses of traveling there as all those OUT of state.
quoting mo .....
well -- you all need to 'get there' - to the hearings - considering the current circumstances anything less is saying you don't care what happens. it's as simple as that... ***********''
mo/others,
i understand your anger at not having larger numbers of folks attending.
I DO CARE about dr. jones/jemsek and any other llmd with health dept. charges being filed against them.
i'm in NO shape to come. can barely hobble around now. left hip needs to be replaced; hope hip surgeon will say YES NEXT TUES. to this.
look at last week's meeting being canceled last minute; we'd have been stuck with out of pocket air fare. i don't fly often; so my statement here may be completely out of wack so forgive me if it is. i was just trying to use that as an example of paying expenses and can't get money back for cancellations.
what's happened to ALL PARENTS OF 10,000 KIDS? to me, that's where the majority of folks attending should be coming from ... personal experience w/jones care/treatment for their kids.
thank you to YOU 40 FOLKS WHO WENT TODAY!
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Would it matter in any way if the rest of us were able to call in somewhere and voice our support for Dr. Jones?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
We cannot afford to loose this doctor,his young patients need to be at the hearings,who else is gonna help these kids is what Jones's attorney should ask.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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if i saw you hobbling up to CT i'd give you such a pinch!! no dear, noone should be putting themselves out to that degree - but we all do need to be putting ourselves out to the greatest extent that we can. -- you and others who cannot go certainly do that from where you are!
that said, i am certain there are more who COULD go who have not. yes, i'm turning the screws.
it's necessary to considering the circumstances and what these children will be facing if jones is allowed to be railroaded by a kangaroo court.. our physical presence and shining light on this case makes it harder for the board to behave in that manner. it also supports jones tremendously to see a packed room, and that ripples out to the other LLMD's across the nation. it shows support for all these docs who put their liscences on the line to treat patients suffering from these diseases. we have to maintain steady support right now considering all.
it's more than necessary that we have large numbers attending each hearing.
and i'm quite certain this community could accomplish that, and we must.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I was there until about 2:30 with my boy (healthy boy, sick mom-me). I'm still meditating over, becoming one with, digesting, blah, blah, blah all that is going on with this hearing and went on yesterday.
One thing is certain, Dr. Jones, his attorney and expert psychologist came across as so genuine, knowledgeable, classy and "in the right".
I don't know how many patients attend hearings when other doctors are being charged (anyone have numbers?), but I bet 40 or more is very uncommon. The panel was facing us and looked us in the eyes all day. I want to think that we made a difference!
Of course if the room had been filled, it would have been better. But maybe 40 dedicated, loving supporters was more than enough.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
i have some notes on the second half of the hearing.
yes, jones, his legal team, and the LL neuropsychologist testifying were stellar. the same is true for the past hearings. the concern is the boards focus and the comments and questions they continue with. attendance must be high in order to support the strong defence case being presented, because it is obvious the board would like to ignore that.
the defence is doing their job and doing it VERY well, and they need us to do ours.
it's wonderful that you came, allie.
i'll post notes on a seperate thread - that may illuminate the issue of needed attendance.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
My sister and I both wish we could go. My nephew is a patient of Dr. J's and my sister travels 600+ miles to see him once a year.
I think alot of people have very sick children and can't attend because of that. But I think the parents of children Dr. J has made well should be there if at all possible.
posted
Would definitely be there every time if I lived nearby.
Since I am unable to attend, I have made donations to his legal defense fund.
My grandson & his parents fly to CT every 3 months to see Dr Jones. With travel expenses, it adds up quickly. The uncertainty of whether the hearings will take place as scheduled also complicates matters.
My daughter wrote an excellent letter of support (with picture of their family of 6) and sent a donation to his legal defense fund.
I hold Dr Jones in such high esteem! I don't think anyone else on earth can measure up to what this man represents and what he has accomplished.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Extra special thanks to those who made it to this week's hearing. Your presence was all the more valuable in that there were not more in attendance.
Do we have a date for the March session, yet?
-------------------- "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
Robin, I'm sorry, but as far as I know, there is no place to call in to support Dr. Jones.
But if people want to support Dr. Jones, there is a way.
Dr. Jones' Legal Defense Fund will be running out of money in the near future. If Dr. J cannot afford a legal defense, then the chances of losing his case increase astronomically.
So one thing people can do is to contribute whatever they can to Dr. Jones' Legal Defense Fund.
If we try to contribute as soon as possible, it will not only get him the legal help he needs, it will also get the message across to Dr. Jones that we support him.
Thtere is a link for contributions on the left hand side. You can either pay by credit card through pay pal or send a check to the address for the fund. Thanks, Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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sizzled
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posted
Does anyone have any idea when the date for the next hearing will be "revealed"? My husband and I would like very much to plan to make the trip from FL, but it makes it very hard to make plans for something like this when there is always the chance that something will be postponed on the last minute, as was the case last week.
No doubt there were many who had already left and were driving when word came that the hearing was postponed. Many others may have already paid for flights and hotel rooms. No doubt this accounts for the lesser numbers in attendance yesterday. Do I dare wonder aloud if this may have been "part of the plan"? I've said enough!
Guess it is thoughts like this that make me all the more determined to be there come h____ or high water!
Posts: 119 | From Southwest Florida | Registered: Sep 2005
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bettyg
Unregistered
posted
also for those strapped for money, another way we can help dr. jones is writing him a letter!
in one of the 1st ones posted either in medical or activism, it shows his address as well as the defense fund address.
just one way of bringing up his spirits with this week's low turnout of 40-43 folks!
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sizzled
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posted
Just read an excellent article about the controversy and Dr. J hearings in The Hartford Advocate, January 25,2007.
Page 12, titled,"Ticked Off"
They say to "Write us at: editor@hartfordadvocate or [email protected]"
Posts: 4258 | From over there | Registered: Jul 2001
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posted
should someone set up a seperate action thread to write the hartford advocate?
i'm thinking that would be a good thing to do.
as far as hearings being postponed at the last minute, i believe that has only happened once. as far as the dates - what was said on thursday at the hearing was the board and attorneys would be looking to coordinate a march date.
once it it set, we will all be notified here.
as far as hearing attendance numbers, my understanding is that jones' legal team preferred numbers at the first couple of hearings to be limited to about 50, give or take, and it was. as the hearings have gone on, the legal team has concurred with jones and activists wishes to increase attendance, hence the larger venues being arranged. when arrangements are made for large rooms, we need to try and fill them close to capacity, for obvious reasons.
there is a need for public concern and pressure now, which requires physical presence.
we still have three areas to focus on in support of this cause.
1. donations to the legal fund are required. 2. media contacts/support of good articles and action alerts need to be acted upon. public awareness can be raised on local level, and especially in CT and the NorthEast. 3. we need to have large groups show up at hearings. noone can be expected to make all the hearings, but if you can - great. others should be arranging to get to any of the hearings they can possibly manage. bring friends and family, or ask someone to go in your place. keep rallying for attendance on all message groups you are on.
this is so important to all of us, children and adults alike.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
quote:Originally posted by sizzled:
Just read an excellent article about the controversy and Dr. J hearings in The Hartford Advocate, January 25,2007.
Page 12, titled,"Ticked Off"
They say to "Write us at: editor@hartfordadvocate or [email protected]"
sizzled, could you/someone post the link so we can read and THEN RESPOND by email to paper? thx!
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posted
I too am thankful for those who did attend this hearing, and for those who are keeping us posted on this site of the developments.
I wanted so much to attend this hearing, had it on my calendar to go, despite poor health and sick children (four of my five children are patients of Dr. Jones).
I am on very aggressive IV therapy for meningitis and other neuro lyme complications, have severe pain from bulging and herniated discs in my lumbar spine and a hip joint that I'm told needs replacing, but I told my husband I wanted to go anyway.
He looked at me like I'd lost my mind, but I told him it's about sacrificial giving--and no one deserved our sacrifice more than Dr. Jones. Hearing that, he was grudgingly willing to support me going, but then two of our kids got too sick for me to leave. I was quite frustrated.
Thanks again to those who did go, and to Mo and the others who are keeping us informed. I will be looking for info on the next hearing date, and NOTHING will keep me from the next one. I hope to bring the kids too.
Posts: 962 | From Charleston | Registered: Jan 2002
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Ann-OH
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A Lyme Disease Community Rallies Around A Connecticut Doctor.
By Adam Bulger
January 25 2007
Joy Walker and Lucy Barnes are really into Lyme disease. Both women sent me e-mails, from accounts embedded with references to Lyme, about the ongoing legal travails of Wallingford's Dr. Charles Ray Jones. They are part of a surprisingly active community of people who have devoted much of their lives to Lyme disease.
Barnes termed the case against Jones a ``witch trial,'' and believes Jones has been unfairly targeted for his successful treatment strategies.
``Most doctors, I'd say, hate Dr. Jones. They are misdiagnosing children, and the children get sicker and sicker, and finally the parents start looking for help on their own. They look at support groups and on the Internet. They come to people like myself and we send them to Dr. Jones,'' Barnes said.
To Walker, Barnes and other Lyme advocates, Jones is an unfairly persecuted hero.
``He's the only one who's taking these children and caring for them in the whole country -- actually the whole world,'' Barnes said. ``He understands that Lyme is a complex illness.''
The accusations brought against Dr. Jones by the Connecticut State Medical Board are fairly straightforward. Jones, a pediatrician who deals almost exclusively with Lyme disease sufferers and is part of group called the International Lyme and Associated Diseases Society, or ILADS, diagnosed a child over the phone, without ever meeting the child in person.
``He was coughing so much he was going to be expelled from school,'' Jones said. ``I thought it was the humane thing to do. I did it with prudence and foresight, as well as with compassion and concern.''
But the child's father complained to the state medical board, which launched into a series of hearings over Jones. His most recent hearing, scheduled for Jan. 18, was cancelled. The case is still pending, with the next hearing scheduled for Jan. 25.
Barnes, Walker and others say the Jones case is illustrative of a nationwide debate surrounding Lyme disease.
``The Jones trial is part of a nasty pattern of professional character assassination aimed at ILADS-sympathetic doctors, a pattern which the Lyme community resists at every turn,'' Walker said in an e-mail.
They and the people behind Web sites like LymeDiseaseAssociation.org and organizations like the National Capital Lyme Disease Association have followed Jones' hearings closely. Hundreds of people have reportedly attended his seven previous hearings.
Jones and others in ILADS argue that Lyme disease is more prevalent and persistent than many medical authorities say.
``We have a different view of Lyme than the infectious disease people do. We think Lyme is complex and difficult to treat, and that there definitely is chronic Lyme disease which can demand more treatment than just the three weeks they advocate,'' Jones said.
But the Infectious Diseases Society of America clashes with ILADS in how they view the standard of care for Lyme disease. The IDSA, by contrast, advises a conservative approach to the diagnosing and treatment of the tick borne illness.
``This contentious debate over the chronic nature and proper treatment of Lyme forms the background to the Jones investigation,'' Walker wrote in an e-mail.
Jones' struggle is at the frontline of the debate. The members of the Lyme community view him as one of the world's few doctors who are treating Lyme disease correctly.
But the national Center for Disease Control accepts the IDSA's view of Lyme.
``For the most part, the evidence shows that most people recover from appropriately recognized and appropriately treated Lyme disease. Only a small subset of patients have longer lasting symptoms,'' CDC Epidemic Intelligence Service officer Kevin Griffith said.
The CDC and IDSA state that Lyme disease is treatable, and say that Jones' longer antibiotic treatments do more harm than good.
``Nearly all people -- more than 95 percent -- who do get sick with Lyme disease and are treated with the recommended course of antibiotics get better and go on with their lives,'' said Gary Wormser, M.D., lead author of IDSA's 2006 guidelines on Lyme disease, in an IDSA document.
According to IDSA guidelines, two weeks to a month and a half of antibiotic treatments effectively kills the disease. The IDSA believes using antibiotics on a long-term basis to treat Lyme is ineffective and potentially harmful to patients. Jones, by contrast, will prescribe antibiotics until the patient is symptom free for two months.
Jones said he is aware of the problems long-term antibiotics use can cause, but says it's the best treatment option available.
``After 10,000 children with Lyme I have yet to see that happen,'' Jones said. ``The people who criticize Lyme physicians for using long-term antibiotic therapy think nothing of having their patients with acne on Tetracycline and Minocycline.''
ILADS proponents argue that Lyme is a far wider reaching disease, one that stays in the body and requires more extensive treatment, than what the IDSA and their allies believe.
``The IDSA guidelines say there's no such thing as chronic Lyme disease. They know damn well there is,'' Forschner said.
Lyme disease was named for the Connecticut town where early cases were spotted in the '70s. According to the CDC Web site, there were 23,305 reported cases of the disease in America in 2005. Several Lyme supporters said that number is low, due to the low percentage of Lyme disease getting reported. The IDSA standard blood test for Lyme detection, they say, is inadequate.
``This small group of conservative academics is saying that if you don't have a positive test, you don't have Lyme,'' Forschner said.
Connecticut Attorney General Richard Blumenthal is investigating IDSA for anti-trust violations with regard to their Lyme disease guidelines. The anti-trust inquiry was brought on by Lyme advocate Lorraine Johnson, one of Jones' attorneys. Blumenthal's office did not respond to a request for comment.
One Lyme disease advocate implied that eventually the IDSA would change their view on the disease.
``If you go back to the '70s, we were told by a lot of the same academics that are still hanging around that it was a south eastern Connecticut shoreline disease. It causes inflammation in your joints and bull's eye rashes. That's all there is to Lyme disease,'' Forschner said.
He added: ``They were wrong. It's country wide and world wide. It's not just joints ... They've been behind the curve very consistently.''
Thank you Adam so much for your excellent 1-25-07 article about Dr. Charles Jones', well-known children's chronic lyme literate MD nationwide, hearing with Conn. Health Dept.
You showed both perspectives of the issue:
, long term antibiotics, ILADS method, vs. . short term antibiotics, IDSA method, resulting in CHRONIC LYME patients NOT being cured according to Wormser and other IDSA mds.
Jones is 1 of a handful of chronic lyme literate MDs, LLMDS, in the USA. Rest of MDs will NOT treat these beloved children wanting to have QUALITY OF LIFE that we adults take for granted until chronic lyme takes that away from you totally!
I've had chronic lyme now for 37 years; 34 years misdiagnosed by 40-50 MDs/specialists until I persevered hearing of lyme disease, and having a western blot igm & igg blood test performed at 1 of 3 top-rated TICK/LYME LABS in USA: Igenex in Calif.
I had enough positive bands shown that met CDC's requirements to be COUNTED as 1 of Iowa's 2004 lyme cases diagnosed.
``For the most part, the evidence shows that most people recover from appropriately recognized and appropriately treated Lyme disease. Only a small subset of patients have longer lasting symptoms,'' CDC Epidemic Intelligence Service officer Kevin Griffith said." HOG WASH!
The CDC needs to get out talking personally to all 50 states since each state has had reported lyme or lyme co-infections diagnosed! See below maps!
2005, top 20 states in CDC STATS; fyi, IOWA no. 15%
posted
Thank you Adam, TC, Joy, and Betty, and all those working hard to get the word out!
-------------------- "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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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Up. Mo did you post your notes, yet? I can't seem to find them. I am so grateful that you were there.
Wish I could get there, but it is impossible. I continue to donate to the defense fund - as should we all.
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