sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
"Is there any way to assist Dr. Jones without going?"
YES.
Dr. Jones recently requested financial donations so that he can continue his legal defense. The medical board's pursuit of Dr. Jones will last well beyond the December 18th hearing.
I have asked all my friends and family to not buy me anything for Christmas this year, but to instead donate whatever they can directly to Dr. Jones' legal defense fund.
Despite the significant penalties for doing so, my husband and I also decided to withdraw all the funds I had in the 403k savings plan from my last job, and we are donating half of that money to Dr. Jones.
We are falling deeper and deeper into debt and could use every penny to help us begin to dig out. For us, though, this decision couldn't have been any simpler.
Nothing else matters more right now than having our son get better, and we firmly believe he doesn't have a chance at that without Dr. Jones.
We are also positive that if the players not very far behind the scenes are successful in driving Dr. Jones out of practice, a host of our LLMD's will quickly come under a major, sustained assault.
The quickest, surest, least expensive and most effective way to "cure' the problem of late/chronic Lyme is to get rid of the few doctors who will diagnose and treat it.
If Dr. Jones falls, even with his national recognition and reputation and the down right devotion he has inspired in so many, do you really believe YOUR LLMD could survive a similiar assault?
Helping Dr. Jones right now is ESSENTIAL for all of us, my fellow Lymenetters. Please do what you can to help him.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
What about the possibility for those of us who can't be there to call in that day to some phone number(s) for the panel and express our support?
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
What about an ad in the local paper that would run the day before? We could all chip in.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Lymeout I like your Idea.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey- if anyone has frequent flyer miles they have never used and don't want donate them to Derek or to LymeToo so they can be there!! Just an idea!!! (If I win the lottery I would pay for us all)(and a newspaper ad too!!!)
Wish I could be there too- please anyone who can, pleeease go!!!!!!!!!!!!!!!!!!!!!!!!!!!
Sincerely, Sarah
-------------------- 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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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
the newspaper ad is a great idea- i am waiting for a call back from the Courant to find out how expensive a full or half page ad would be if run on Sat dec 16 or on sun dec 17th.
calling the board's offices that day also seems a fabulous idea, because there is NO reason why every single one of us can't do that much for Dr. Jones.
I'll be happy to find and post that number- i'm going to call dr. J's office first to make sure that making those calls aren't counterproductive somehow.
Also, we have an appt with dr jones on december 10th, and i will ask him then what else might be helpful for us to do in the immediate and short term.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I'm thinking that the time is here to stand up for Dr. Jones and that any consequences for my personal life are secondary.
-------------------- "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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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
called dr. jones' office, and then his atty's. am waiting to hear back from the latter.
they'd appreciate that these ideas are vetted to ensure that we don't accidentally and with the best of intentions do anything that will harm dr. j.
i'll relay whatever i hear as soon as i hear it.
fighter- well said- and so succintly!!
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I may be able to drive up there that day, it would be about a 2.5 hour drive for me.
I do have many frequent flier miles that I would be happy to donate. I used to travel a lot for work, haven't so much over the past year because of not feeling well.
It would be good to have one of our well-versed Lymies there.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
I can go but I can't get up there until about 2:00. Think I would have a problem getting in if I'm late?
Posts: 184 | From CT | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
was told that letters to the Board would be OK, calls not.
please see separate thread with the correct address- am trying to centralize info related to writing letters in one thread-
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
The following post is from Eva at the Empire State LDA. Please distribute.
URGENT!! PLEASE DISTRIBUTE!! !
December 18, 2007 at 1:30 p.m., at the Legislative Office Building, Capitol Avenue, Hartford, CT, in Conference Room 2C.
Fellow Lyme patients and advocates!
Dr. Jones' "Decision" Hearing: We all need to be in Connecticut on December 18!
Support of Dr. Jones translates to support of OURSELVES!
At his age, Dr. Jones could have retired with his medical license intact, but his vision was to defend and prove the protocol that helps so many. Dr. Jones went through these hearings to validate our side!!!!
He's an original, developing knowledge of tick-borne diseases most importantly in these areas:
a.. that standard Lyme tests are often negative, but when a patient exhibits clinical signs, these can be assessed to diagnose Lyme and other co-infections b.. his successful case-histories have proven that long-term treatment, when necessary, is a viable standard of care What is most urgent about this situation is captured in the following statement from Dr. Jones:
"the proposed decision states that I have been charged with failing to reconsider my diagnosis of Lyme disease in light of the negative Western Blot tests in April, 2005."
You see if they go forward with this - they are essentially saying that there is no such thing as a "clinical diagnosis" of Lyme. If this panel of the Connecticut State Medical Board is allowed to perpetuate these statements in Dr. Jones' decision, we all are in trouble. -
On December 18, the panel judging Dr. Jones will make its recommendations to the entire board and Dr. Jones' rebuttal will be made. Then the entire board will decide to accept or deny the panel's recommendation. Our attendance will help to show them that, thanks to Dr. Jones, tens of thousands have been saved. We hope that the board will take notice, consider the value of Dr. Jones' medicine and find for him, against the panel's recommendations. At the very least, it is important for us to be there as a statement of our own rebuttal of the panel's poor judgment. And the media will want to hear from us, even if the panel does not!
Eva
See below: letter from Dr. Jones *** See underlined - patients, doctors - all will be affected!!!
CHARLES RAY JONES, M.D.
Madison Towers
111 Park Street, 1st Floor
New Haven, Connecticut 06511
Tel (203) 772-1123 Fax (203) 772-0682
December 5, 2007
Dear Friends,
I have appreciated the many expressions of support being conveyed to me by so many of you, and want to keep you apprised of the latest developments regarding the charges brought against me by the Connecticut Department of Public Health.
Almost as soon as I had issued my previous update to you, the hearing panel assigned to my case released its "Proposed Memorandum of Decision." This decision, which is preliminary, recommends that many of the charges against me be upheld and outlines the following sanctions: a reprimand from the Connecticut Medical Examining Board, a total civil penalty in the amount of $10,000, and a two-year supervised probationary period, to be conducted by a physician who will review my patient records at my expense. My license, however, was neither suspended nor revoked, nor was it recommended that it should be.
I want you to understand the potential impact of these recommendations, if they are allowed to stand. For example, the proposed decision states that I have been charged with failing to reconsider my diagnosis of Lyme disease in light of the negative Western Blot tests in April, 2005. It also states that I have been charged with diagnosing a disease in very low risk patients, with non-specific medical histories, non-specific signs and symptoms, and negative laboratory tests. Bear in mind that the record indicates that these patients had traveled to other states, had camped in Oklahoma, and had a history of tick attachments. A panel of the Connecticut Medical Examining Board has determined that the Connecticut Department of Public Health has sustained its burden of proof with regard to these charges, meaning that I am guilty as charged.
As you can see, these recommendations fail to take into account the unreliability of laboratory testing for Lyme disease. If they are not overturned, they will seriously impede my freedom to diagnose and treat Lyme and other tick-borne diseases based on my clinical judgment and expertise, despite the fact that I will be allowed to retain my medical license. Furthermore, these findings will set a dangerous precedent for other physicians treating Lyme disease. That is why we must prevail and, if we are unable to reverse these recommended findings, continue to oppose them in court. ***
The full board will consider the hearing panel's recommendations and proposed penalties at a formal hearing scheduled for December 18, 2007 at 1:30 p.m., at the Legislative Office Building, Capitol Avenue, Hartford, CT, in Conference Room 2C. Written responses, or legal briefs, must be submitted before December 13. At the hearing, both sides will present oral arguments. My legal team will challenge the preliminary findings and the proposed sanctions. It is possible to see movement from a panel's "Proposed Memorandum of Decision" to an approved final decision, after the full board hears the oral arguments and reads the briefs.
I extend a warm and hearty welcome and encourage your attendance at this hearing. It is important to convey to the full board that this is a matter of considerable importance to the surrounding community. They have reserved a big conference room for this purpose, indicating that they are anticipating a very large turnout. We wouldn't want to disappoint them! Please bear in mind, however, that this will be our first public encounter with the full medical board. It is critical that we do not distract them, or disrupt the proceedings in any way. The press also is likely to show strong interest in these proceedings, and it will be important for them, as well as the members of the board, to see the Lyme community for what it is: responsible, dignified and appropriately involved.
Once again, I want to emphasize that your caring and concern during this process has been invaluable to me. As you know, your financial support has been essential as well, and your generosity has touched me deeply. I hope that you will continue to make donations, to the extent that you are able, to the Charles Ray Jones, M.D. Legal Defense Fund (http://www.lymesite .com/drjones. htm).
I send very best wishes for a healthy and happy holiday season.
Sincerely,
Dr. Jones
Charles Ray Jones, M.D.
See below about tests:
Johns Hopkins October 2005:
Johns Hopkins released the results of a two year study indicating blood tests missed 75 percent of the people with Lyme. Hopkin's latest results confirmed what the International Lyme and Associated Disease Society (ILADS) has been stating for years- "up to 90 percent" of people with Lyme were being missed using the standard testing methods.
The recently released study admits the sensitivity required for Lyme testing is still "not obtainable", causing a potential nightmare for those who were told they didn't have Lyme due to a negative test and therefore, were denied treatment for a serious and potentially chronic infectious disease.
The study determined skin biopsies of the rash and cultures can be inconclusive. In addition, waiting for results, which may take a month or more, may delay necessary treatment. Without prompt and adequate treatment, the Lyme infection can become more entrenched and more difficult and costly to treat. Testing spinal fluid, an invasive procedure with risks to the patient, has also been determined to be of little diagnostic value.
According to Hopkin's, months after becoming infected, untreated patients can develop chronic major manifestations and can experience serious neurologic, cardiovascular, or musculoskeletal disorders.
Blood and tissue specimens for the Hopkin's study were collected from 86 Maryland and Pennsylvania residents who were evaluated at the Johns Hopkins Medical Institutions in 2001 and 2002. The results were not published until October, 2005.
For more information, for this article in full, and for the actual John Hopkins study, please email!
Eva Haughie, Pres. Empire State Lyme Disease Association, Inc http://www.empirest atelymediseaseas sociation. org/
__._,_.___
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I would so love to be able to attend another hearing, especially this crucial one, but I do not have enough airmiles for a London-NY-London ticket, nor do I have the money to pay for the plane tickets.
So, as it's unethical and against board rules to ask for money -- I'm asking if there is anyone with a LOT of airmiles who can spare about 60,000 air miles (which I think most airlines require now for a transatlantic ticket), then I would be there 'on behalf of England'.
My daughter and I went to one of the previous hearings together and although she's not being treated for Lyme she was really pleased to meet Dr Jones and thought he was a 'big teddy bear'.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
My understanding is that December 13 is the cut-off date for letters to arrive in support of Dr. J. Can someone confirm that, please?
-------------------- "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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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
fire-
i did not hear that cut-off date when i spoke directly to dr. j's atty's office and that of dr. j.
common sense says that since the 18th is monday, mail received that late or by sat the 16th might well be too late, because it will take awhile for letters to make their way through the internal mail delivery system.
so, with an exact cut-off date or not, it certainly makes sense to have them sent as soon as possible!!
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I do have transportation once in NY, CT....just need the plane fair....or a body that would replace me at the hearing....
Posts: 983 | From The sky | Registered: Feb 2005
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posted
Sorry for the confusion, I was actually directing my message at both you DLL and Lymeblue. I've pm'd both of you so hopefully we can speak sometime this weekend.
Jennifer
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
That's fascinating that DDL could fly in from England! People everywhere are interested in this case. What about visuals? Holding banners and signs from states and countries in support?
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
jennifer, god bless you; you are a SPECIAL ANGEL FROM HEAVEN for offering to donate all those frequent flyer miles to both England's don'tlikeliver and trueblue!!
what a refreshing, positive post!!
robin, i do like your idea of signs showing different states and ENGLAND shown of those attending!
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
up
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Tracy, I forgot, If I make it there, definitely we need to stop at the supermarket.....!!!
Posts: 983 | From The sky | Registered: Feb 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I was thinking maybe people should hold 8x10 Photos of Kids that Dr J has helped.
To actually see the faces of all the sick angels he has saved........
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
More informatin on how to help,please distribute:
1.Addresses for letters to the Connecticut Medical Examining Board:
It has been suggested that emails, rather than snail mail letters, may get through more quickly, given security measures in place. Letters to the Board should be positive in tone, not inflammatory or accusatory. Express your support for Dr. Jones. State what he has done to help you or someone that you know? How has he contributed to the well-being of patients? What will be the consequences to the community if he is not available to practice and train others?
Here is the snail mail address:
Dr. Dennis G. O'Neill, Chairman, CT Medical Examining Board 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
2. To send letters to CT Governor Rell:
Again, letters should be positive in tone, speaking of Dr. Jones' considerable value and contributions to the community, lives he has helped and saved, rather than inflammatory or accusatory. In the case of letters to the governor, it might be ok to note concern over the process, to the extent that it has seemed unfair and unreasonable, asking her to investigate the behavior and motivation of the DPH, if you feel that this should be done.
Governor Jodi Rell Office of the Governor State Capitol 210 Capitol Avenue Hartford, Connecticut 06106
3. Please copy Dr. Jones' attorneys on letters to the CT Medical Board and to Governor Rell:
Elliott Pollack, Esquire
Christine Collyer, Esquire
PULLMAN & COMLEY, LLC ATTORNEYS AT LAW 90 State House Square Hartford, CT 06103-3702
NOTE: The CT Medical Board is expected to hand down its decision at this hearing.
Letters to the Hartford Courant can be emailed to letters@courant. com or by using the Courant's online form via http://tinyurl. com/2kasmf. They have a word limit of 200 words. Letters to Gov. Rell can be emailed to governor.rell@ ct.gov Faxed to 860-524-7396 or mailed to
Office of the Governor State Capitol 210 Capitol Avenue Hartford, CT 06106
You can also go to the CT govt website via http://tinyurl. com/2fx84o to express your opinion about various subjects, including healthcare, by filling out a form.
Posts: 983 | From The sky | Registered: Feb 2005
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Dr. Jones said:
quote: Bear in mind that the record indicates that these patients had traveled to other states, had camped in Oklahoma, and had a history of tick attachments.
Gee, I used to camp in OK and had a history of tick attachments when I grew up in that state! I've also traced my symptoms back to sometime in my childhood.
Tracy9 that's a good point.
I'm trying to decide if I can afford to take the train to NYC and stay with my son and DIL.
Of course I would still need to get to Hartford. Not certain how long that takes.
I can't walk long distances yet, but manage to walk several blocks at a time whenever I'm in NYC.
Mulling things over in my mind.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Hi, I missed that about their handing out the decision that day. I didn't think they ever did that. But if you saw it someplace , could you let me know.
You guys are fantastic in helping each other out to get there. Jenifer giving those airmiles is wonderful.
I think that visuals are out, unfortunately.
Check out the part in Dr. Jones' letter that said we need to be quiet observers. I think I will choke trying to be that, but I do know it will be the most effective strategy.
If anybody thinks this isn't important, remember that in 2001, Dr. H and Dr. B in NYS were both charged with medical misconduct. Two of the legislators who believed in us pushed the head of the Assembly Health Committee to hold hearings on Lyme disease.
He was not happy about this.
But, you could see the expression on his face change when almost 500 quiet, serious looking patients filed into the auditorium where he had expected a handful of whackos.
The visual that turned him around was the visual of many, many, serious, earnest citizens showing up to be counted.
Mind you, I'm all for signs and noise etc, but not in this venue
Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
Anything anyone can do he hearing would be appreciated.
There will be hundreds of seats that we need to fill to show how important Dr Jones is.
I just got upsetting news that one activist around here just called her list of people and so far no one is going. So please think of whatever you can do to spread the word. Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I saw Dr. Jones yesterday.
He needs many of us to come on the 18th.
I know it would be a very long day, but what i'd like to do is drive up the morning of the 18th and come straight back after the hearing.
Four people can fit in my car, and I'd be happy to pay for all gas and tolls.
Any volunteers for an all expense paid day to CT and back to help Dr. Jones? I'll be leaving from Baltimore and can folks up form the train station there or from park and rides anywhere going up north.
I will need help driving- i cannot drive there and back safely on my own, but can do a great deal of the driving if another or others can co-pilot.
please let me know ASAP.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
up
Posts: 3905 | From USA | Registered: May 2007
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posted
Good news and bad news: I will be there and I've made arrangements to get Lymeblue there, but sadly I wasn't able to use my miles to get Dontlikeliver here.
I guess because it's so close to Christmas the airlines are charging twice as many miles as usual.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
When I said Jennyflyer called my daughter told me that it sounded like a miniture lady flopping wings was on the other side....flying while talking over the phone,,,funny!
Posts: 983 | From The sky | Registered: Feb 2005
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posted
What about some kind of online petition of support for Dr. Jones like Ann has done for Congress?
Posts: 422 | From CT | Registered: Oct 2007
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