posted
Note: Posting this for Kay. Her email is at the bottom if you think you can help> nan +++++++++++++++++++++++++++++++++++++++ Dr.??? is trying to get Dr. Charles Ray Jones's medical license taken away.
This is the time for all of us to show him what he really means to us. What he has meant to our kids lives.
I am organizing a rally for the hearing. It will be in late January in CT.
PLEASE try to leave open your calendar in late January. We will have buses from all over to help get you to the rally.
I will share the date as soon as I get it.
His lawyer says we need to show the court that what he is doing for our kids IS WORKING and that a show of people outside the courtroom will definitely HELP.
Also if your child has been denied care for TBD and Dr. Jones has helped, please contact me. The lawyer wants to hear from all that have been denied care but ESPECIALLY anyone that was denied care from Dr. Eugene Shapiro, Yale and Children's.
posted
There is no end to what these %$#@*!@# &%$#*# will do!!
Of course this is spear headed by Shapiro -- who else would do this?
I will be there... IMO every one of us should be, with or without children.
This hits the community right in the heart..
many have said they speculate that the reason 'they' do not 'go after' him because of the public outcry expected.
let's show them their trepidation was warranted.
This outpouring should be MASSIVE. We could turn this on it's ear, and even perhaps bring awareness to the suffering of thises kids and the lack of healthcare throughout the country.
Mo
PS: is there any way we can make this thread 'stick' at the top?
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
if we can't be there, is there anything else we can do???
Sherry
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
I have no doubt that this was brought about because Doc J. has been critical of "establishment" medicine recently, in newspaper articles.
They want a fight eh ? Shapiro has no idea the can of worms he's opened by attacking this man. The CT. groups will literally go ballistic when this hits the fan.
If we take the 7,000 patients he's treated, times all the parents, grandparents, siblings, etc. you could literally shut down traffic at the hearing. Every parent that owe's their child's life to Doc J. should be in attendence and send written testimony.
Especially, the children that were misdiagnosed by Yale and Shapiro's staff, who then went on to be successfully treated by Doc J.
I hate to say this folks, but these people will stop at nothing to make sure that lymies are not treated.
From now on, every "duck" visit where you're harassed, laughed at, kicked to the curb as psychotic, a complaint to the state med board needs to be filed. We have got to take the offensive in this battle.
Currently, we sit and wait for one of our doc's to get targeted and then we come out in full force. This needs to change. After receiving adequate treatment from an LLMD, we need to file a complaint against the "ducks" that misdiagnosed us in the first place.
Truth is on our side.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Where? When?
GRRRRRRRRRRRRRRR! I'll be there!
Posts: 4258 | From over there | Registered: Jul 2001
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posted
I'll be there......
Posts: 56 | From RI | Registered: Aug 2003
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
If this goes down, I will be there.
Many parents testified at the Boston hearings, lauding the great work Dr. Jones has been doing with their children (and mine). I am sure you will be able to rally plenty in his defense.
Keep us informed.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Dont make me write another-dissapointed in all you-post,only kiddin.I will be there.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
Nan good for you in organizing the rally! We will fly out from Seattle. Dr. Jones has saved our son. I have seen nothing (yet) about a defense fund for Dr. Jones. But there must be someone close to the situation who can help us. Also do you know who is defending Dr. Jones?
I woulld be willing to collect funds for Dr. Jones defense, if someone is not doing it yet. Pls call me when you can my phone is 253-631-3258. Thanks, Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
This appeared on another Lyme list and I sent Kay a copy of the recent Lancet article that was posted here.
That Lancet article was a nugget of pure gold. Every medical board anywhere who is prosecuting our doctors should be sent a copy.
If they are targeting Dr. J, they haven't seen anything yet.
It does seem like one step forward, one step back. They (anti- LLMDs) must be taking such aggressive steps because the weight of the truth about Lyme is really threatening them and their careers and their reputations.
We will not go away.
Posts: 1067 | From East Coast | Registered: Dec 2000
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I have had an overwhelming response to my posts and know it is just the very slightest beginning of the support that is to come.
There are FIVE things to do now:
1. Spread the word. SHARE this message ANYWHERE and EVERYWHERE. Call people, write letters, speak up.
2. Please send me your written testimonies.
PLEASE keep them BRIEF and to the point. Us Lymies have a tendency to ramble and include repetitions of detail and also way too much detail. Try to keep your written testimony to around 700 words, about 1 1/2 pages, at the very most.
Please send them in EMAIL FORMAT as I will NOT open ANY ATTACHMENTS! Send them to [email protected]
3. Dr. Jones' lawyer wants to hear from anyone whose child was denied care by a doc or hospital, especially if they were denied tx by Shapiro, Yale or Boston Children's Hospital and then they were helped by Dr. Jones. If this is your situation, please email me to get Dr Jones' attorney contact info. [email protected]
4. We will RALLY for Dr. Jones sometime near the end of JANUARY. I will send out the date ASAP. We will need people from all areas to organize buses to get people to the RALLY. If you are willing and able to organize a bus from your area please contact me. [email protected] If you can donate monies for buses please contact me: [email protected]
5. Do NOT send negative messages to the "other side". Do not attack with negativity, attack with the positive action of support for Dr. Jones and the other doctors that ARE willing (and smart enough)to treat us, our kids and loved ones. We need to show solidarity and calm, strong determination. We can NOT allow Dr. Jones to loose his license. Where would your child or grandchild be today if it were not for Dr. Charles Ray Jones?
Hope, Kay "Enough fireflies, united, can light a stadium." Dr. Michael Anderson & Dr. Brooks
"Never doubt that a small group of committed people can change the world." --Margaret Mead
"Nobody makes a greater mistake than he who did nothing because he could only do a little." --Edmund Burke
posted
ARRGGGGG! I cannot express the anger I feel right now! Not only has he helped my children but now recently he has helped ME!!!! After 2 years of ducks screwing up. I will be there come heck or high water!!!
My children were not denied medical care anywhere just mis-diagnosed (or not diagnosed at all)
Do you still want that kind of testimony? pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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posted
I think they probably scheduled this for the month with the worst weather, in order to cut down on attendance of lymies! Just another dirty trick, in my opinion.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I see this as a diversionary tactic. This sort of thing is exactly what "they" want and need to keep lyme patients busy. We don't have that much energy anyway, and now we're going to focus on "saving dr. jones".
It's a way to keep people under control by channeling their anger and frustration into a relatively harmless set of activities.
wag the dog type stuff.
It's opera bouffe. Meanwhile, behind the scenes, thousands of scientists are desperately trying to figure out what exactly is going on.
Bb s.s. is the most bizarre micro-organism on the planet.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I'm wondering why this is not coming through any of the official channels? I'm on a list with a lot of the doctors, and they often post these kinds of issues. There hasn't been a word.
Its terrible that they would go after this wonderful man. He needs to be allowed to retire with praise, not attacked and censored!
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Following is contact info for the Connecticut Health Dept. Maybe, we can send them an e-mail or call and let them know how Doc J. saved numerous children's lives, that Yale and Shapiro could or would not do.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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It seems to me that it might not be a bad idea to write this Shapiro character directly and in a polite but deadly fashion-no profanity, cut the potty mouth, Thomas!!!-tell him exactly not only what we think of him but what he is doing to the thousands of people that Dr. Jones has helped and is going to help in the future. Could someone please send to me directly the exact nature of the charges that are being leveled against Dr. Jones. Cheers. Thomas
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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quote:Originally posted by Thomas Parkman: Dear Members of the List,
It seems to me that it might not be a bad idea to write this Shapiro character directly and in a polite but deadly fashion-no profanity, cut the potty mouth, Thomas!!!-tell him exactly not only what we think of him but what he is doing to the thousands of people that Dr. Jones has helped and is going to help in the future. Could someone please send to me directly the exact nature of the charges that are being leveled against Dr. Jones. Cheers. Thomas
shapiro knows what he is doing, and he's used to being verbally abused w/profanity. no need to be polite with him. in fact, the only way that you're likely to make any sort of impression on this **@%#$!#!@%$* at all is if you employ especially creative/artistic strings of expletives within your letter.
what might be more helpful than sending letters to shapiro (who is very used to being hated) is to send nice, polite letters to some of his COLLEAGUES at yale, including administrators, explaining how this BLOATED PORCINE MONSTER is using his position in academia to ABUSE AND REPRESS untold thousands of AMERICAN CITIZENS. tell your own story, in grizzly detail.
shapiro stopped listening to anyone but big pharma, insurance companies, and his IDSA slavemasters many years ago.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
This is just so sad. I'll be seeing Dr. J in Dec with my two little girls (20 mos and 4yrs). He has been treating my oldest for a little over a year and the baby for just a few months.
I'll be there in January to show my support for him.
We really need to rally for him. He is a kind human being and really cares for his "kids". We need to show him how much we appreciate him! We also need to do this for future kids that will need him.
Posts: 441 | From USA | Registered: Jul 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Thank you for letting us know Nan. This is VERY upsetting, Dr. Jones is a living saint..how can they do this????
God willing I will be there too.
Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
I caution anyone wanting to write anyone else in anger. That could seriously backfire.
As Kay said.. and I see it as the most powerful thing as well.. if every one of us writes and sends her a concicse testimony of the positive tretament and health benefits seen in the kids inder his care, that will be allot more powerful than attacking Shapiro if we are in large scale numbers..
Also...if we can get allot of folks who were turned away fron Yale with their stories, all the better..
But I would think any medical story under his care will help. What's important is to move and do. I'm sure we've all imagined what it would be like if he were no longer able to practice. Plus...all hope in training new Docs, further conferences, talks..papers.. is lost.
The more I think about this, the more I believe this will be an avenue to one of the most trmendous rally's in LD history.
A huge movement.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I would think it will be important to include in the letters, aside from clinical improvement..
any testing results, pcr's, brain scans, MRI's ect..by mention or inclusion -- either showing proof of condition and/or improvement..
(scans and such improved) along the way, for those who have them.. tho clinical improvement and treatment when other's abondoned these kids is very important as well..
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
I can tell you that notification of this action has been given on another listand that reaction there is similar to ours.
As soon as the call goes out for donating for bus fares for people to attend the rally, please do post it here.
Also if there is a lawyer fund to donate to.
Also if there is a fund for folks from out of town to be given help with any hotel/motel fees in the area of the rally, so that people are able to attend from far away.
My resources are limited but I would donate to such a fund and I'm sure others would, too.
Just a thought, but perhaps w/in the Lyme community, the usual funds for some of our HOLIDAY GIFTS at this time of year could be sent to folks on our gift list in the form of "I have made a donation in your name to a fund to protect the doctor in America who treats children with Lyme Disease."
You know how people give gifts of charities in people's names. I know that money is short for many of us, but I know some people familiar with my disease who would be honored to have their name attached to this present cause.
Thank you to all who are getting us organized on this.
We will not go away.
Posts: 1067 | From East Coast | Registered: Dec 2000
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
here is a link to the CT Attorney Generals website for transcript of the Lyme Hearing on January 29,. 2004.
Page 229-231 is what the CT Commissioner of Health, Dr. Galvin states regarding physician's complaint of another physcian's treatment protacol of lyme disease.
Link is to home page, have to scroll down to Health Issues and open Lyme hearing of Jan. 29, 2004.
quote:Originally posted by 5dana8: I am shocked ducks still can take the "low" road.How can they ignore all the new resaerch.? Can they not read?
Money, it's all about money.... and a little PRIDE thrown in.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
I'd definitely make sure that Doc J's attorney gets a copy of that CT. Lyme hearing, very little "grey" area in what Dr. Galvin stated. Read on............
229 1 if I could interrupt you for just one second? 2 I'm getting the impression that 3 there's a degree of unrest among you folks 4 pertaining to the Department of Health having exact
5 ideas about what is or what isn't appropriate 6 treatment for Lyme Disease. 7 One of the things I pride myself 8 on is being a fair man. And I insist that our 9 regulatory branch be run in a fair and above-board
10 manner. Ms. Furness, who runs that, is exactly the 11 type of individual to do this. 12 I would like to spend less than a 13 minute to quote from a letter that was sent out in 14 response to a complaint about a physician by some
15 other physicians who did not agree with the first 16 physician's methodology of treating of Lyme Disease. 17 "Currently, medical experts differ 18 in their recommended treatment modalities relating 19 to the diagnosis and management of Lyme Disease.
As 20 these groups demonstrate", the groups who have 21 different types of treatment, "credible medical 230 1 evidence to support their differing perspectives, 2 the Department of Public Health is not currently
3 initiating investigations based solely on the 4 diagnosis and treatment of Lyme Disease. If you 5 have information indicating that standards of care 6 were not met in such areas as patient assessment and
7 monitoring, please provide this Department with the 8 name of the patient and a summary of the 9 circumstances surrounding your allegations." 10 And this is what we will do. We 11 are not in the business of advising physicians how
12 they should treat patients. And we have no special 13 criteria that we are going to use to evaluate people 14 who are treating Lyme Disease in a variety of ways. 15
16 And one of the reasons I wanted to 17 have a panel of differing practitioners here is so 18 we could all understand there are different ways of 19 trying to do the same thing. We will treat 20 everybody fairly. If, however, for some reason the
21 physician in question does other things that breach 231 1 the standard of care, then we have to act 2 accordingly. 3 ATTORNEY GENERAL BLUMENTHAL: Let 4 me just say, while we're doing announcements, I will
5 have to leave early because I have learned that the 6 Bureau of Indian Affairs will be announcing this 7 afternoon, is scheduled to announce this afternoon 8 the decision on the recognition of the Skattico 9 petition for acknowledgement from the Federal
10 Government. And that will be some time around 3:00. 11 So I'm going to going to be leaving a little before 12 3:00. And Dr. Galvin and Tom Ryan of my office will 13 be conducting the remainder of the hearing.
14 I want to thank Dr. Galvin for his 15 immense contribution to this hearing. He has helped 16 spearhead it, selecting the invitees and providing 17 the extraordinarily meaningful advice to my staff
18 and to me in organizing this very significant 19 hearing. 20 And I just want to say in a 21 sentence more pointedly what he has said; which is
232 1 that nothing that I've said, nothing that we've done 2 here should be interpreted as the Attorney General 3 or anyone from State Government really telling any
4 doctor how to diagnose or treat a disease. We have 5 enough to do without getting into that kind of 6 activity. And one of our panelists said this 7 morning -- and it is certainly a credo of the 8 medical profession, "First do no harm." And 9 certainly, a great deal of harm would result from
10 State Government telling doctors how to practice. 11 In fact, I have said repeatedly and I said at this 12 hearing five years ago that we never would try to do 13 so. And, in fact, our effort has been to allow the
14 doctors and their patients to be the ones making 15 these decisions without the interference of health 16 insurers or HMO's or anyone else, including our 17 State Government.
18 So, really, today is not intended 19 to formulate a one fit -- one size fits all 20 diagnosis or treatment, but simply to educate, make 21 more aware and try to seek solutions where we can be 233 1 helpful.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Thank you NP40 for posting the text. I couln't copy & paste it so thought the link would give it creditability.
I did sent the link to our Greater Hartford Lyme support group facilitator. Hopefully it helps Dr. J's lawyer.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Not sure he would be involved here. More likely the Medical Board? If Shapiro brought the complaint and he appoints himself as the expert in treating pediatric lyme at Yale, then I'll just bet he found a patient who had some complaint about Dr. Jones. I find it hard to believe that anyone would complain about that man....but there are plenty of whackos out there.
The CT Lyme Hearings are online and worth looking up if you want a good read. Some excellent testimony came outr of those hearings! Blumenthal was part of those hearings.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Blumenthal is still AG of Ct. Im in Ct but an an elder vaccine victim with no association with Dr. J. or the Ct. Lyme assn.
The meetings are too far for me to drive. I do hope to be well enough to at least go an be a body standing for support on the day of the hearing.
Posts: 561 | From connecticut | Registered: May 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I just got something in email describing the case. I hope he is okay. He is a wonderful, wonderful man and Eugene Shapiro is not.
-------------------- 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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quote:Originally posted by CaliforniaLyme: He is a wonderful, wonderful man and Eugene Shapiro is not.
This is the understatement of the century.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
If Dr J is no longer allowed to treat children with Lyme, the major outcome will be that many, many, many children will suffer!
They want to endanger the littlest sufferers who do not have a voice.
We are talking about tiny innocent babies, toddlers, tweens and teens who will suffer a very long life of injustice, severe pain, horrible mental problems, behavior problems, problems in school, and god forbid, perhaps one of these children may die w/out their continued treatment.
They want to endanger these children's lives, our children's lives. I consider all Dr J's children 'our's'. My son does not go to Dr J because he shows no symptoms of Lyme or coinfections (thank God) BUT I cannot even imagine not having Dr J be there in case my son does need to see him.
So, WE need to protect our children. Noone else will. They don't care about the kids - but these children mean the world to us.
We need to make them understand, loud and clear, that noone is going to endanger our children's lives, health or futures.
Posts: 1485 | From USA | Registered: Apr 2004
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posted
OK . We all have to be at the rally. Don't excuse yourself because you think others will be there . If everyone will think that way- then no one will show. The more people the better. every person that will show up will make a difference. Even if you don't have kids- think of it this way - you touch the best lyme doc, others will fall too. We are all directly affected by the outcome of this. This is a moment in History. let's stirr the media's attention. I am from Toronto and very sick. But I feel so strongly about this that I will go. Are there any buses being organized from Toronto? I think it's a 15 hour bus ride. Or near Tornot, New York? Once you guys know, let me know. thanx
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