Here is an update on the status of Dr. Jones' legal battle. Currently, his defense costs are far in excess of the money sent to his legal fund. Why be bothered?
*State Boards fused to Academic anti-clinicians have assisted in the damage and deaths of many youth throughout the US. While good work has been done, we cannot lose and have physicians prohibited from life saving Lyme care. We cannot lose the world expert in pediatric Lyme care and mentoring.
*Every Lyme physician in the US is one call away from a 50-250,000 dollar state board war and a possible lost license. Each knows that and this is one reason many shrink from more aggressive work and treatments. If Jones loses, it sets up a model that anyone can be brought down.
*We must have the liberty to have any doctor we choose to treat us freely, and with Tick diseases, the freedom to keep our children ALIVE and FROM FUNCTIONAL DECAY. Since the state boards are legislating a standard of care, paternalism has seized your freedom of medical treatment, and only aggressive battling will restore it to you.
*If we lose him, there will be a domino effect. When we lost Dr Dorothy Petrucha a few years ago, two other pediatric docs decided to walk away, and these were just the ones that we know about. Many physicians are quietly watching to see if they will be alone, if they have to face the board. Show them that treating Lyme does not mean losing everything.
*During my modest training time with him, he worked 7 days a week for the children he treats, with little concern for his own damaged joints.
*If Shapiro wins, we ALL lose! Can you imagine all those simple anti-clinicians gloating about Dr. Jones "being disciplined." The ugliness of this relentless servant being abused is sickening.
*Thank God, Dr. Jones is willing to stand and fight. At his age, he could have easily retired and walked away. But like his early friend, the Rev. Martin Luther King, he knows about fighting. But no one fights alone and wins.
Few of us have much extra disposable income. But sometimes the need to stop darkness and injustice, requires a sacrifice done simply from love and a hunger to see justice.
"The Dr Charles Ray Jones Legal Defense Fund" c/o George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492 (203) 782-4343
"Gift" in the memo field.
Legal defense funds are not tax deductible. It is up to those of us who know what a horror that this illness can be to help Dr. Jones have the most seasoned, aggressive and competent legal experts and defense tools possible.
100% of your donation will go directly to the legal defense of Dr Jones.
~~ this is from Doc J.S.
************************************************
editing to add another doctor's plea for full support of Doctor Jones, speaking volumes to the need:
Dear friends and colleagues,
How many of you enjoy asking for help? Yeah, I know, me neither.
Nevertheless, it is what I am doing this morning on behalf of a man I have met only once and whom I know almost entirely by his reputation and the stories I have heard from grateful parents.
Dr. Charles Ray Jones is a pediatrician who has worked hard for many years on behalf of young people with acute and chronic illnesses caused by tick borne agents. It is imperative that we stand with him now in spirit and in practical financial ways to defend his right to practice medicine.
If those waging this attack actually gave some thought to what they are really doing...that is:
undermining the independence of all practitioners to treat patients according to best evidence coupled with best clinical judgment...they might reconsider the prudence of these attacks.
Please join me in sending what you can, maybe just a little more than you can comfortably, to the Legal Defense Fund for Charles Ray Jones.
We cannot allow this strong children's advocate to be silenced.
I am not asking you to decide if you agree with Dr. Jones' approach in minute detail. I am not asking you to support his every decision. We all know that if we review charts carefully we will always find something we might have done differently or better. I am asking you to take a stand with me and others who see this as an act of persecution for approach and beliefs, not prosecution for wrong action and negligence.
You know, I am convinced that none of us gets out of this life without learning the humility of truly needing others and asking for their help. The world is far better for each of us who takes that lesson to heart. Thank you for considering this important matter. In gratitude and with humility,
PS : I `m a simple thinker. If one were to set aside $1.00/day that would be $30.00 in a month, $300.00 in 10months. Isn't it worth $1.00/ day to support this children's advocate? If 100 people pledged $1.00 / day it would be $3,000.00 in a month, $30,000.00 in 10 months. If 1,000 people chose to devote $1.00 /day that would be $30,000.00 in a month, $300,000.00 in 10 months. And what if one could devote $2.00/ day to this? Well, just double it all up! And what if ... Most of us are not wealthy but we can all contribute. Please, do what you can.
"The Dr Charles Ray Jones Legal Defense Fund" c/o George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492 (203) 782-4343
Please also write the word "gift" in the memo field. Legal defense funds are not tax deductible. 100% of your donation will go directly to the legal defense of Dr Jones.
~ from Doc B.S.
[ 08. January 2006, 12:35 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
This is true, but let's not forget the other side. This should be a warning to all LLMD's to be careful to see their patients and do proper testing. Even if their patients come from far away, they should see them in person several times a year. They should make sure that patients on longterm antibiotics are getting regular CBC's to check liver function and white blood counts. Any physician of any kind anywhere could and should be vulnerable to censure or perhaps losing a license if he treats patients over the phone without a consult first. And LLMD's, in going against the current standard of care, need to err on the side of impeccable. This is why LLMD's test, even when they clinically recognize chronic lyme.
This is not to say Dr. Jones is not a hero as indeed he is but the hard fact is, if what I've read is correct, he did make a serious mistake in prescribing drugs to patients he had not yet seen in person. I know this is hard for the lyme community to face but its the truth--it's not legal or the proper standard of care.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Do you, in fact, know this is illegal? Have you been reading the recent threads about this subject?
It is my understanding that he did this because it would be six months or more before he could see these children in person. Maybe you have this attitude because your child did not have to wait that long for treatment. This happened because there is hardly anyone in the whole country who will treat kids with a serious bacterial infection, one that can cause blindness, deafness, stroke, heart damage, meningitis, etc.
I am not surprised his legal fund is running short. In the time I have spent in lyme activism, it has become plain that most people do not step forward to help. Those that do are in the minority. If I were a Lyme doc, I would not be so interested in treating those who are only concerned with their own welfare....who will drag themselves around the country to an ever diminishing number of LLMDs, complain because ins won't cover the expenses, but are unwilling to do anything to change the situation.
This is a life or death mess we are in. It takes everyone's efforts to make changes. Surely it is more useful to do that than find fault with the measures employed by beseiged and persecuted docs.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I have given once and will will continue to contribute to Dr. Jones Defense fund. This is just too important to our community to lose.
With regard to oxygenbabe's comment of Dr. Jones committing "a serious mistake in prescribing drugs to patients he had not yet seen in person".
When it comes to saving a child's life or preventing significant functional decay verses the slight medical risk in prescribing antibiotics prior to an office visit due to 5 month waiting list. The decision is clear. There has to be room for a doctor's professional judgement. Not to offer some help to a patient would seem contradictory to the Hippocratic Oath and a physicans duty to protect life.
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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With all due respect, there are critically important issues here to this community.
Medical Boards and private henchman of insurance provider interests should not be dictating Lyme literate care practices. Critical decisions must be made by our LLMD's every day on behalf of patients.
We do not know the details of the medical case in question. There is no proof he committed a 'serious mistake'. I highly doubt that.
We do know that if there were more than one pediatric Lyme specialist practicing in the US, telemedicine may not have been necesary.
We do know telemedicine is practiced by many doctors when necessary.
We do know that there are many physicians infractions that truly are a threat to patients that have gone un-addressed by State Boards.
We do know that Doc J performs more surveillance tests and careful monotoring of these children than most doctors existing on the planet. I have two children under his care... their files are literally three feet high or more.. I don't think you can speak to his care unless you have real experience under it. No doubt there was evidence and careful decision making in this doctors prescribing in this case.
We do know that there are thousands of children as we speak suffering terrible fates without care.
We do know his work has saved thousands, and could potentially save thousands more, and that the loss of this case will cause many Lyme open Docs to walk away from this highly medical-political illness.
This is a critical fight, of you do not view it as such, then by all means...don't join it.
These are the critical points to consider right now, for those interested in the furure of Lyme Literate care for children:
*State Boards fused to Academic anti-clinicians have assisted in the damage and deaths of many youth throughout the US. While good work has been done, we cannot lose and have physicians prohibited from life saving Lyme care. We cannot lose the world expert in pediatric Lyme care and mentoring.
*Every Lyme physician in the US is one call away from a 50-250,000 dollar state board war and a possible lost license. Each knows that and this is one reason many shrink from more aggressive work and treatments. If Jones loses, it sets up a model that anyone can be brought down.
*We must have the liberty to have any doctor we choose to treat us freely, and with Tick diseases, the freedom to keep our children ALIVE and FROM FUNCTIONAL DECAY. Since the state boards are legislating a standard of care, paternalism has seized your freedom of medical treatment, and only aggressive battling will restore it to you.
*If we lose him, there will be a domino effect. When we lost Dr Dorothy Petrucha a few years ago, two other pediatric docs decided to walk away, and these were just the ones that we know about. Many physicians are quietly watching to see if they will be alone, if they have to face the board. Show them that treating Lyme does not mean losing everything.
*During my modest training time with him, he worked 7 days a week for the children he treats, with little concern for his own damaged joints.
*If Shapiro wins, we ALL lose! Can you imagine all those simple anti-clinicians gloating about Dr. Jones "being disciplined." The ugliness of this relentless servant being abused is sickening.
*Thank God, Dr. Jones is willing to stand and fight. At his age, he could have easily retired and walked away. But like his early friend, the Rev. Martin Luther King, he knows about fighting. But no one fights alone and wins.
****Please bring this thread back to the focus at hand! We can't afford anything less.
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I will apologize right off the bat cause here i go again.When(hopefully)dr jones is cleared of this then another LLMD will be looked into and we will try to raise money for them and on and on.We will never win the money war with them,we have none and they have plenty. Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I didn't expect this opinion to be popular. As I recall, in his own letter he explained that he prescribed to children he had not yet seen.
I'm sorry but you can't say telemedicine is common, or that this is life and death, or because I don't have a young child I wouldn't understand.
I'm saying that this is not proper standard of care and that if doctors everywhere would do this, with the excuse that a patient in another state couldn't visit them soon, then we'd have havoc, where doctors could conceivably prescribe whatever medicine they want over the phone. Since LLMD's are practicing what is still not regular standard of care, they need to be impeccable. If the lyme community doesn't admit he made a mistake that will not be good for them or him. It is better to say, he made a mistake, he erred out of caring, and he is generally a great doctor who has saved many kids lives. If he doesn't admit the mistake, and the lyme community doesn't either, it will be harder for them, and for him, I am convinced.
Many many people have gotten their lives back with longterm antibiotics, btw, but there are hazards. A duck I saw when I first got lyme, who believed the 2-3 weeks of doxy is a cure, also had a tale to tell: a patient who had been put on IV Rocephin by one of this board's favorite LLMD's, one of the pioneers, for YEARS and had to have surgery because of a massive fungal ball in her sinus.
When a doctor who already doesn't believe in longterm antibiotics (and doctors take a long time to change their standard of care, as we saw with h. pylori), sees a patient who has to undergo sinus surgery for a massive fungal ball created by excessive antibiotics, you're going to forever have a harder time convincing that doctor to come round.
These are realities. I know this opinion will enrage people but it is not all black and white.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Your opinions don't enrage people. Everyone has a right to an opinion on LL care..
This thread is simply beside the point of those opionions and is focused on other critical points in Lyme advocacy for children.
To add to Doc Shaller's call..another Doc is vouching for Jones below, and asking for help in this fight, which also speaks volumes:
Dear friends and colleagues,
How many of you enjoy asking for help? Yeah, I know, me neither.
Nevertheless, it is what I am doing this morning on behalf of a man I have met only once and whom I know almost entirely by his reputation and the stories I have heard from grateful parents.
Dr. Charles Ray Jones is a pediatrician who has worked hard for many years on behalf of young people with acute and chronic illnesses caused by tick borne agents. It is imperative that we stand with him now in spirit and in practical financial ways to defend his right to practice medicine.
If those waging this attack actually gave some thought to what they are really doing...that is:
undermining the independence of all practitioners to treat patients according to best evidence coupled with best clinical judgment...they might reconsider the prudence of these attacks.
Please join me in sending what you can, maybe just a little more than you can comfortably, to the Legal Defense Fund for Charles Ray Jones.
We cannot allow this strong children's advocate to be silenced.
I am not asking you to decide if you agree with Dr. Jones' approach in minute detail. I am not asking you to support his every decision. We all know that if we review charts carefully we will always find something we might have done differently or better. I am asking you to take a stand with me and others who see this as an act of persecution for approach and beliefs, not prosecution for wrong action and negligence.
You know, I am convinced that none of us gets out of this life without learning the humility of truly needing others and asking for their help. The world is far better for each of us who takes that lesson to heart. Thank you for considering this important matter. In gratitude and with humility,
PS : I `m a simple thinker. If one were to set aside $1.00/day that would be $30.00 in a month, $300.00 in 10months. Isn't it worth $1.00/ day to support this children's advocate? If 100 people pledged $1.00 / day it would be $3,000.00 in a month, $30,000.00 in 10 months. If 1,000 people chose to devote $1.00 /day that would be $30,000.00 in a month, $300,000.00 in 10 months. And what if one could devote $2.00/ day to this? Well, just double it all up! And what if ... Most of us are not wealthy but we can all contribute. Please, do what you can.
"The Dr Charles Ray Jones Legal Defense Fund" c/o George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492 (203) 782-4343
Please also write the word "gift" in the memo field. Legal defense funds are not tax deductible. 100% of your donation will go directly to the legal defense of Dr Jones.
from Doc B.S.
[ 08. January 2006, 12:36 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Dear oxygenbabe,
I agree with you in part. Our Lyme docs should be extremely careful. In my own child's care, I thought Dr. J was quite conservative in his approach, actually. And his approach is working.
I don't know much about the charges and circumstances, but the little I've gleaned from the posts that are out there make me tend to believe that Dr. J did nothing illegal or unethical. Prescriptions without seeing the patient happen a LOT, and not just by teledocs. And we don't know how much of the medical background he was privy to before prescribing.
I am willing to support Dr. J (and I am not prone to knee-jerk support of ANYone, believe it), based on how selflessly he has supported us (including me and my child personally), and on how these charges are at the least trivial; at the most, a witch hunt.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
UP!
Posts: 8337 | From the other shore | Registered: Jul 2002
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
We are encouraging LLMDs to have patients sign an informed consent form which is available through CALDA unless they have their own.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Informed consent is a good idea. Look, I support Dr. J, I've heard nothing but good. What I am trying to say is this is a very contentious area and LLMD's should err on the side of caution, so it was a mistake to prescribe abx to kids he had not yet seen, and I hope it was not a "fatal" mistake but it was a real mistake. Longterm abx is not yet standard of care, though it is happening more often, and more famous people are going out there with their stories (Amy Tan, Wyatt Sexton etc), still I think all other LLMD's will hopefully take this as a warning. I don't think one after another will necessarily be attacked, if they are careful and monitor the patient carefully.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Certainly, and Jones is an impeccable and astute clinician and monitors his patients very carefully. (He needs no defence from me.)
We have no idea the details of this case.
And actually, there are TWO standards of care in medical treatment of Lyme disease at present, the IDSA and the ILADS Guidelines. The ILADS Guidelines reccomend long term abx in certain cases.
Check their site for the current info on standards of care.
What is standard here are the witch hunts turned on most LLMD's. The same thing has happened to several of them, including Doc B.. Doctor Jones is the very best and most experienced of them all.
This case is an attempt to squash one of the standards of care. If they take out the LLMD's who practice it, it will no longer be viable. This is not about this doctor's compitance.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
There are not enough LLMDs now to go around for all the people that have Lyme. Do we need to lose one of these doctors?
Perhaps this is the time for us all to stand together to try to help save this guy, as he has stood and tried over the years to save many Lyme patients. Maybe it isn't the time to focus on second-guessing a single instance of his decision to treat a child in the way he did.
Just my opinion...
quote:Originally posted by oxygenbabe: Informed consent is a good idea. Look, I support Dr. J, I've heard nothing but good. What I am trying to say is this is a very contentious area and LLMD's should err on the side of caution, so it was a mistake to prescribe abx to kids he had not yet seen, and I hope it was not a "fatal" mistake but it was a real mistake. Longterm abx is not yet standard of care, though it is happening more often, and more famous people are going out there with their stories (Amy Tan, Wyatt Sexton etc), still I think all other LLMD's will hopefully take this as a warning. I don't think one after another will necessarily be attacked, if they are careful and monitor the patient carefully.
posted
I personally wish Dr. J. had been more careful. Perhaps he could have worked with the family's doctor or some other practitioner in their local area, so that that person did the actual prescribing. "First do no harm" argues for NOT prescribing. Lyme adovcates at hearings use this motto all the time-wrongly. It more likely means not prescribing unless absolutely certain.
I speak as one who was also attacked by the medical establishment. My child was at Children's Hospital in Boston, and they almost killed her with the wrong insulin dose (she has diabetes). When we left AMA, they went after me through DSS for the multitude of health issues my child has (they said it was psychological, and I was overmedicalizing, doctor shopping, overmanaging etc.) and for Lyme treatment itself (longterm antibiotics).
At the point at which she was in Children's, most of her problems were, in fact, from the meds, not the disease, meaning yeast and GI issues from antibiotics and other side-effects from headache meds and SSRI's. Thank God she never went on flagyl or mepron or I would really have been nailed. The point is, these MD's had never even heard of chronic Lyme, saw effects from meds, and, perhaps logically, attacked me. If I explained, in any detail at all, then I probably was overfocussed (or, worse, ahd Munchausen's by Proxy, which was mentioned but not in the charges)
My legal defence cost us $4000, and our bank accounts were already depleted by illness. I couldn't find a lawyer who was Lyme literate. I had to get all medical records from all MD's (8, I think) and organize testimony from them and from school officials and community people. It was 8 hours of work/day all by myself, for 4 months.
The charge against me was technically "neglect." I have three children who are all thriving despite all our illnesses- something which takes more parenting skill than these MD's can begin to imagine. They are all high honor roll students, the two high schoolers win every "character" award, they do community service, and are talented in the arts. Yet, I endured three months of being afraid I would lose them because of these MD's.
The social worker was a huge advocate. She researched Lyme and generally was very supportive. She not only closed the case, but took the unusual step of erasing it from the record as a mistake, with a letter to document this fact. It could easily have been otherwise with another social worker.
We were lucky to have this social worker. Parents, we are all vulnerable to this grave danger to our families, with this war that is going on. And to Dr. Jones, I understand what you are going through. I do.
However, I did not get through this intact because of my kids' character or achievements, or my personal qualities. I got through this because in all the years we have been dealing with Lyme, I have been extremely careful about every detail of my kids' care.
I make sure everything is documented, I get records myself, and I make sure an acceptable doctor sends us to our LLMD's. I was able to defend every visit to a specialist, every test, every LLMD visit, every prescription.We use a fairly conservative LLMD in Boston, who has great credentials.
I also was friendly and welcoming to those who were investigating my family- and so should everyone trying to help Jones. Anger and passion will increase the problem.
Dr. Jones has not been similarly careful w/his care, in this case, and it is regrettable. Like oxygenbabe said, these LLMD's need tgo be impeccable.
Parents, it is getting close to the time where we will lose custody of our children if we treat them for Lyme. Do folks understand this? Be careful using Lyme doctors who insist on their freedom to do what they want. YOU will be attacked for this, if the doctor is not.
Noone helped me at all during my crisis. I spoke with Dr. H in NY, and he just looked scared and walked away. Dr. D. vouched for me, but it he got too involved, it threatened his practice, right?
Nooone did any fundraising for me, and I am still traumatized, along with being sick. But, I am trying to be rational and understand the other side.
We need to stay calm, firm and "professional" in these battles. I counsel my daughter, who was also traumatized, to FORGIVE. If we don't understand that some of these people have good intentions, even as they attack MD's we love, then we just polarize things. Even Steere has some good things to say, about autoimmunity, for instance.
I am trying to find in my heart the ability to say that the "other side" is not evil. They truly believe that long-term antibiotics are harmful, not just to patients but to society. And, it is true, many of these meds are harmful- just as cancer drugs and even insulin can be.
The Lyme community polarizes the issues, just as much as the other side does. When two sides remain rigid in their misunderstanding of one another, more polarization and fighting is inevitable.
The result is, that people like oxygenbabe and myself are afraid to express our feelings. There is an orthodox, party line in the Lyme community and it is uncomfortable for those who depart from it.
The best thing would be for Jones to admit his mistake, and agree to practice restrictions on prescribing antibiotics without cause, esp. from a distance. He could still practice and we can all continue to advocate for change in the accepted standard- esp. for research that PROVES the need.
In the meantime, even the testimony form some of Jones' fellow doctors sounds unprofessional, adversarial and emotional.
The long term answer here is to find middle ground, use political skills, forge connections with influential people, and fund RESEARCH.
The Juvenile Diabetes Research Foundation is a great role model...read up on it. They are polite but noisy, have celebrity spokespeople, have well-organized grassroots political campaigns (we meet with our legislator in a small group, as do groups all over the country. The legislator gets his picture taken with us, we write a thank you, etc.), they have a "remember me" campaign in Washington with a huge mural of kids' faces, they have walks, galas, gift-wrapping events, volunteers who visit newly-diagnosed people, networking coffees etc.etc. They educate the public, and medical professionals too.
The current form of Lyme advocacy, including this style of effort on behalf of Dr. Jones, is only hurting us more. And parents, watch out...the school, an MD you think is friendly, a relative or a neighbor- anyone can call DSS on you for your problem with Lyme. If a moderate like me can run into this trouble, anyone can.
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
IMPO, I think it is criminal the way the majority of physicians treat us Lyme sufferers.
It took me over 12 doctors and over two years before I found out about Lyme myself, found a LLMD myself and was finally diagnosed and started treatment.
When I look back to the past, I can pinpoint when my school phobia, many of my symptoms, my memory problems, school problems, anxiety, etc, started - back around middle school! This would explain why I went from memorizing and reciting entire Bible chapters to not remembering the rooms my classes were in, the teacher's names, where my locker was or what my locker combination was.
If you go back that far, over a decade, I went to at least 30 some doctors between then and now.
I have been ridiculed, ignored, laughed at and yelled at by doctors. A few of these doctors tried to help me but couldn't even diagnose me. The majority of the doctors just ignored me or thought I was crazy.
I think the way I have been treated, or the lack of treatment, is a heck more criminal than what Dr. J did.
Posts: 1485 | From USA | Registered: Apr 2004
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Lydie
Unregistered
posted
Mine is a complex point of view, and not black and white, and may be open to misunderstanding. Did you misunderstand me?
The point is, if you were a kid and went to all those doctors now, your parents would be vulnerable to attack just like I was. All of us, parents and doctors alike, have to be more than perfect to be able to defend against attack. Dr. J. wasn't perfect.
The other point is, that the anger in your post, while, of course, justifiable and often shared, in the most uncomfortable way, by me and my family- is counterproductive when defending ourselves or our physicians against attack. It just increases the image of Lyme patients as hysterical and unreasonable, and LLMD's as extreme and irresponsible.
Try telling a DSS worker or judge that you have been 'abused" by doctors. Do you think they will listen, or that this attitude will help you? It will certainly not help Dr. J. It doesn't matter if you are right.
If you feel that the treatment you received was "criminal,"PLEASE hire a lawer and sue, or at the very least report them to the Medical Board of Registration in your state, for their conduct toward you, for failure to diagnose, whatever. If the Lyme community does in fact decide this is a war, and that there is no middle ground, then we will all have to get more aggressive and do this type of thing.
Issues such as money , professional prestige and advancement, and licensing determine the course of the debate a lot more than patient need. That is just the way it is.
Personally, I still feel that finding middle ground with the "enemy" will eventually be the way to go. In the meantime, everyone needs to be careful. Dr. J. was not careful.
It doesn't matter if lots of other MD's prescribe over the phone. We're not talking about justice here. Dr. J. was under scrutiny and "they" were hoping for something like this to pin on him. He is not part of the "club," simple as that.
At least Dr. J has a hearing. If parents have to defend themselves for Lyme treatment of their kids, there is no due process, the attackers can make stuff up, and you are guilty until proven beyond any doubt that you are innocent. The justice system is turned upside down.
And I still counsel forgiveness!
Oversimplification and polarization in the Lyme community are clearly not working. I and my entire family have suffered with this disease, and we have also been abused by MD's. I have written pleas as part of my Lyme articles in the Boston papers and locally, for MD's to treat us with respect. This is the best I can do to help myself heal.
I also try to write about patients being caught in-between the camps, in the Lyme wars. I emphasize that there are a lot of things that aren't known, that there are a lot of mysteries. We need to be careful and not attribute everything to Lyme, or at least, show openness to the possiblity of other factors. We need to be humble.
Finally, we are victims of all this animosity and should try to avoid contributing to it, if we can. It's hard, but possible. Again, JDRF is a great model.
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posted
Letter from Doc B below..
Posts: 8337 | From the other shore | Registered: Jul 2002
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
quote:Originally posted by Lydie: Mine is a complex point of view, and not black and white, and may be open to misunderstanding. Did you misunderstand me?
The point is, if you were a kid and went to all those doctors now, your parents would be vulnerable to attack just like I was. All of us, parents and doctors alike, have to be more than perfect to be able to defend against attack. Dr. J. wasn't perfect.
The other point is, that the anger in your post, while, of course, justifiable and often shared, in the most uncomfortable way, by me and my family- is counterproductive when defending ourselves or our physicians against attack. It just increases the image of Lyme patients as hysterical and unreasonable, and LLMD's as extreme and irresponsible.
Try telling a DSS worker or judge that you have been 'abused" by doctors. Do you think they will listen, or that this attitude will help you? It will certainly not help Dr. J. It doesn't matter if you are right.
If you feel that the treatment you received was "criminal,"PLEASE hire a lawer and sue, or at the very least report them to the Medical Board of Registration in your state, for their conduct toward you, for failure to diagnose, whatever. If the Lyme community does in fact decide this is a war, and that there is no middle ground, then we will all have to get more aggressive and do this type of thing.
Issues such as money , professional prestige and advancement, and licensing determine the course of the debate a lot more than patient need. That is just the way it is.
Personally, I still feel that finding middle ground with the "enemy" will eventually be the way to go. In the meantime, everyone needs to be careful. Dr. J. was not careful.
It doesn't matter if lots of other MD's prescribe over the phone. We're not talking about justice here. Dr. J. was under scrutiny and "they" were hoping for something like this to pin on him. He is not part of the "club," simple as that.
At least Dr. J has a hearing. If parents have to defend themselves for Lyme treatment of their kids, there is no due process, the attackers can make stuff up, and you are guilty until proven beyond any doubt that you are innocent. The justice system is turned upside down.
And I still counsel forgiveness!
Oversimplification and polarization in the Lyme community are clearly not working. I and my entire family have suffered with this disease, and we have also been abused by MD's. I have written pleas as part of my Lyme articles in the Boston papers and locally, for MD's to treat us with respect. This is the best I can do to help myself heal.
I also try to write about patients being caught in-between the camps, in the Lyme wars. I emphasize that there are a lot of things that aren't known, that there are a lot of mysteries. We need to be careful and not attribute everything to Lyme, or at least, show openness to the possiblity of other factors. We need to be humble.
Finally, we are victims of all this animosity and should try to avoid contributing to it, if we can. It's hard, but possible. Again, JDRF is a great model.
I refuse to get into a flame war over this. My post was far from angry - it was truthful and to the point. I am entitled to my own opinion just as you are. (FYI: I take one of my cases to the medical board but nothing happened).
As for me and my opinion, I will continue to fight for Dr. J.
I would appreciate it if you do not direct any further posts towards me. Thank you.
As for Dr J, he needs all the help he can get!
Posts: 1485 | From USA | Registered: Apr 2004
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Please respect the fight the community and it's organizarional leaders are waging to protect Lyme literate care. Individual and personal bones of contention repeatedly interjected into these threads at this juncture harms this pointed and timely cause.
There is a time and a place to discuss personal opinion on specifics of care, and this is not one of them. It's really beside the point. Doctor Jones' and hundreds of children need the community's help NOW! You seem not to be thinking of these kids, and find your own thoughts more important. I'm surprised at this!
Oxygenbabe, you do not see Doc J and have no children with Lyme, and historically disagree with LLMD care..
Lyddie, you saw him twice and were not happy with him. I respect that. Your daughter has diabetes and Lyme and I am sure the complications are vast and I am glad you have doctors helping her.
I respect your views, but please do put them into perspective and respect the points of this thread and the needs of hundreds of children whose cases you know nothing about. Many of these children are in dire circumstances and have nowhere else to turn.
**In addition, what qualifications and inside information do you have to criticize Doc J's care in the specific medical cases brought up??
Noone is asking you to support this if you do not wish to. I personally hope you come round to see clearly the real issue and do join us, but that's up to you.
However - your points here are extraneuos to the topic of this thread, and there are hundreds of leaders, doctors, and patients standing to this fight.
Thank you.
Letter from Doctor B ----
Hello from Dr. B.
As most of you know by now, Dr. Charles Ray Jones is fighting a battle with his state health department, similar to the one I fought several years ago.
At stake is the ability of literally thousands of Lyme and other patients to receive the kind of care we all know is needed. He risks losing his license and potential monetary damages!
His opponents are the usual ivory tower types, who all would wish that we would just go away, and accept their prescriptions for Prozac and Xanax and try to ``get a life''.
Dr. Jones is THE most important person in Lyme right now, as he is considered to be the number one Lyme literate pediatrician in the world! Obviously, if our opponents can quiet him, then we all will once again be in danger of not being able to get diagnosed or treated by ANY physician, pediatric and adult, out of fear that the witch hunt will spread.
All of our forces have mobilized to support Dr. Jones and what he represents. I appeal to you now to support Dr. Jones in his defense fund.
When I was under attack, contributions to my defense fund and the heartfelt letters of support that accompanied them provided an indescribable moral boost to me. You see, in this type of a battle, the one under attack must keep spirits high and optimism strong and steady, or you lose faith in the battle and in yourself. Because of the huge amount of work and time involved in preparing for and in defending the case, having tremendous amounts of stamina is vital.
I look back now, and I honestly can't imagine how I was able to endure it all. My only answer is that I survived (physically as well as politically) thanks to the outpouring of love, support and prayers I got from everyone. A huge part of that included also the financial support, because going totally broke and potentially losing your house and your life savings can add enormous amounts of additional stress to the whole situation, making you more likely to just give up.
I ask all of you now to support Dr. Jones with at least as much warmth and generosity as you provided to me when I was under attack. He is a good man, a superlative scientist and clinician, and has been the savior of literally thousands of children (and their parents too).
I ask that you also be creative to maximize the results- fund raisers, yard sales, cigarette money, etc. in addition to any extra money you can find.
This is the contact information: ``The Dr. Charles Ray Jones Legal Defense Fund" C/O George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492 (203) 782-4342
Believe me, your efforts are not only very necessary and much appreciated, but know that you will feel a nice spiritual lift as a result of your compassionate generosity. Many thanks. Please spread the word!
Best wishes to all, from Dr. B........................!Posts: 8337 | From the other shore | Registered: Jul 2002
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Lydie
Unregistered
posted
Nowhere here am I trying to criticize Dr Jones, I just said that he had to be more perfect than other MD's, because of the controversy, and he wasn't.
I am trying to help the effort here. Why isn't that understood?
The Lyme community is never going to get anywhere because it is so extreme and angry. The fact that you all are misreading my posts and intentions only proves my point.
If pleading for moderation is considered counter-productive, I am disgusted.
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(btw, I have always admired your advocacy for your kids and what you have been through wih the hospital Docs is horrible, and you are very commendable in overcoming so many obstacles)
I am just trying to stay focused on the clear and immediate need of the community and these children. (Please see Doc B's letter for clarification...) also, you stated the problem is the LLMD's (including Jones) are 'not careful enough'.. and I don't see that you know enough about the case at hand (and many other cases that require certain actions) to state that.. then you went on to say that this community is innefective and going about things with too much emotion.. balance is important to keep in mind
however I have to say..the majority of the Lyme community activists and organizational leaders are not 'extreme and angry' ..and certainly we are getting somewhere!
Look what was accomplished for Doc B when the community pulled together ---
There have been many accomplishments over the years, and this is a most important one!
This community will take the necessary stand for the children, NO DOUBT. I believe that is the issue here.
Mo
[ 09. January 2006, 04:32 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
The charges were brought against Dr J by a spouse as part of a domestic dispute (parents separated or divorced). It's not an amicable situation and the parents don't agree with the lyme treatment. So the one spouse decided to go after Dr J. No children were harmed by the treatment prescribed. Dr J has a 9 month waiting list to see new patients; he gets 5 calls a day from new patients from all over the world.
When my son's health deteriorated last year and we determined he has congenital lyme, Dr J was reluctant to prescribe antibiotics over the phone before our appointment several months later. But we begged him to because our son was doing so poorly and literally was deteriorating daily. He took a very thorough history in writing and then during our phone appointment. I was impressed at how much he knew about our situation before we even started talking. It was obvious he was very familiar with Spencer's file.
Dr J is an amazing human being and it sickens me that his name is being dragged through the mud. He's so unpretentious and unassuming, showing up for his appointments in a nylon sweatsuit.
We live 6 hours away and it's not possible to jump in the car and drive to New Haven when one of the kids isn't responding to the medicine. Dr J answers our calls on holidays, weekends, late evenings whenever we have a question or concern. His office staff works 6 days a week and he's in the office 7 days a week. At 77, that's amazing!
If we had more pediatricians willing to fight the quagmire of controversy surrounding lyme, then Dr J wouldn't have to begin treatment over the phone. It's a sad situation and I worry daily about what we're going to do if he loses his case.
Posts: 52 | From silver spring, MD | Registered: Jan 2005
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Lydie
Unregistered
posted
When an MD puts himself on the line like this, it is admirable but ultimately his practice is constantly in jeopardy. A relative, another MD, a school, or a neighbor could call the Board and start this process at any time.
Nika, I am very sorry to hear mention of Dr. J. prescribing over the phone without examining or meeting the child, more than that one time in the divorce case.
It doesn't matter how much we admire him for doing so, it is against medical practice standards to do this, isn't it?
I wish he had asked the parents to find a friendly local physician, whom he could have advised. That would have protected him.
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