posted
The Charles Ray Jones Legal Defense Fund c/o George Heath III 26 Fairlawn Dr. Wallingford, CT 06492
Also Dr. J has a new lead counsel, so if anyone wants to send letters of support, they can send them to this attorney instead. If you have sent a letter to Carl Porto, no problem - they will be forwarded.
New lead counsel:
Elliott Pollack Pullman and Comley, LLC 90 State House Square Hartford, CT 06103 ph: 860 424-4340 fax: 860 424-4370
It is going to be very expensive. Disgusting that this money has to be spent on defense instead of treatment or research.
[ 14. December 2005, 08:22 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
No offense intended, but why does he need legal defense money? Doesn't he have malpractice insurance?
I have heard many good things about this doctor, but I personally feel any doc who prescribes without seeing a patient first is not practicing good medicine, no matter how good a doc he/she is.
I am sure many of you will disagree with me and I am not trying to stir up trouble. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10189 | From Illinois | Registered: Aug 2004
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posted
This situation is not covered by malpractice insurance.
He prescribed for people who were in desperate situations, could not get care elsewhere, and could not get in to see him for many months. I see this like a battlefield situation where normal rules do not apply, not if your primary mission is to save lives.
If you want to look for the reason why this undesirable situation happened, look elsewhere, for instance at Dr. Shapiro who will serve on the panel to judge Dr. Jones. He has said that he has never seen a case of chronic lyme. What that means is that kids do not get care for late stage lyme from him or any other pediatric doc associated with Yale. Shapiro has helped to create this need for treatment elsewhere, his mistakes go to someone like Dr. Jones. Actually, there is only one Dr. Jones, and if the worst happens, where will those kids go? Maybe you should start thinking about an answer for this, because some people are definitely going to be offended by your post.
Are you getting more than a couple weeks of treatment for lyme? Are you getting extended treatment for any other tickborne disease, or any treatment for bartonella? If so, you are breaking the rules, not sticking to the prevailing standard of care for these diseases.
If you want more details, read the previous posts on Dr. Jones. You are right that most people here will disagree with you, including all the parents of his 8000 lyme patients over the years.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Im with you Lou.We definately need to do anything to support this man.Now having said that,I AM SO SICK OF THIS CRAP,we need to rise up and protest.I strongly feel we need to keep making ourselves VISUAL in protest and that we wont go away.I feel until we take to the streets like aids patients we arent going to get far.Its to easy to brush us away right now but if we make ourselves seen things will change.One strong year of protest in the right places and I believe we could see a big turn around.We need to be on the offense,not defense.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
Dr. Jones put himself on the line for our children. He literally saved my daughter's life. Can't say that about many other physicians. I will most definitely contribute. He has given so much to the lyme community - it is time to give something back to him!
posted
I agree Joe. Seems like we are letting them choose where this gets played out. We are always responding to them, on their own turf. Changing that would be a step in the right direction. They are the home team and they make the rules. Sorry to use a sports analogy for something that is definitely not a game. Just can't think of another. Maybe something from warfare. Offense instead of defense, our choice of battlefield instead of theirs.
Don't know the answer on how to make this change, but somebody smart needs to work on it.
Posts: 8430 | From Not available | Registered: Oct 2000
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I think all lyme association organizations will be busing people in to rally....we must be there.
Dr. Jones showed a film of six or seven of his children at Hope to Heal in May. Amazing stories!!!
We must be there.
And if he needs our financial help......we must give.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
A year ago I was on the verge of losing my business because Lyme made me too sick to work & I couldn't think clearly enough to run a business. A big famous hospital refused to treat me and then an LLMD had the courage to put me on higher dose, longer term antibiotics than my PCP or the specialist ducks would. A year later I'm recovering, still have my business, still take antibiotics and thanks to my LLMD made enough money this year to more than get by.
I am going to write a big check to Dr. Jones right now.
He has had the courage to do what others have not had the decency to do and has saved countless lives & families. He has done for the Lyme children what my LLMD has done for me. We can't afford to lose the few great Doctors we have.
This is the season of giving and Dr. Jones needs and deserves our help. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
People were calling Dr. Jones from out here in CA, the situation is so desperate. We don't have Lyme literate pediatricians. Dr. Jones has been carrying the weight of the children from all over this country.
And he is fighting his battle for us, and the children. He could have retired a long time ago, if he was in it for himself. He needs our support in every possible way we are able. His intention is to protect us and our right to be treated. Let's protect him!
posted
I have not been on in a while. I find this disgusting.
Raise money for a doctor!!
I am sorry but some of you are brainwashed. My husband has been sick for a long time so please do not say I don't understand Lyme BUT...
I find it very strange that a Doctor would need help with money. Wake up people you are being screwed. I am all for his patients supporting him with there voice but not your pocket. It is crazy.
With all my knowledge I think I will become a doctor HECK let me just say I am and get rich off of some of you that put your bank accounts in some of these LLMDS.
Been there done that and now we are BROKE.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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posted
We will support Dr. Jones in any way we can. As financially strapped as we are we will contribute.
He is giving my daughter her life back and we finally have hope. He saved my son from months of hell. He is our angel. We are blessed to have him taking care ofour daughter.
Hicker53 Dr. J. is the only pediatric llmd. He is so dedicated. My daughter and son were so ill. He spent more time on the phone with us, going over results, symptoms, history than anyone would of with a office visit. My daughters first appointment amazed me. He knew things from our phone consult that I forgot about. We walked in there and he knew my daughter and what was going on. He is a hero and has saved my childrens life.
Proudpup... How can you talk like that? I am at loss for words with the comment you made. I am sorry your husband is ill but you don't understand what this wonderful man has done and is doing for so many children. I am sorry you feel this way. How sad.
All of us who support Dr. J. We will not go away. Dr. Jones ia a saint. We will do anyhting to help him.
[ 14. December 2005, 06:12 PM: Message edited by: fatigued15 ]
Posts: 488 | From NY | Registered: Oct 2004
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Lydie
Unregistered
posted
I have also been off for a long time. People on Lymenet, and in support groups, need to respectfully listen to different points of view. The hostility to "dissenters" makes Lymenet and Lyme groups appear to be cult-like, and it is exactly this lack of openness that robs Lyme patients of their credibility. The insistence on uniformity of opinion is scary, and only contributes to the polarization of the debate. Please let people speak, and be courteous!
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
As a former cult member (a looong time ago), I can fully appreciate that, Lydie!
As for Dr. J's money, I don't know where all of it goes. But I know that his office in New Haven is modest. I know that he has at least 2 assistants in the office. I know that he spends a lot of time with each patient (1 1/2 hours is a typical follow-up for my son, and at least 2 hours for a complete work-up for a new patient). I know that his rates are less than many that have been reported on Lymenet, less than my own LLMD, and his office has been willing to work with those who cannot afford that.
IF the guy takes home six figures a year, I would be surprised. But for all the weekends and long hours this guy works, now in his 70's, and all the advocacy he has done for Lyme patients, and for giving me back my son, he is worth every penny.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
If people choose to donate to this fund, fine. If they don't understand the situation, let them think how they would feel if there was only one doctor who would treat them and he was in danger of losing his license.
If you can't afford to do this, no one is asking you to donate. This was posted for info.
I don't think anyone realizes just how expensive this legal action will be.
It is painful to hear people talk about cults. Seems to me this is not a difference of opinion, but ignorance and poorly placed hostility. If you think this is a cult, why would you come here?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou, Does the lawyer want letters of support from folks that haven't been treated by Dr. J? Letters concisely stating the crisis of being ill and seeking treatment for Lyme?
Posts: 460 | From Illinois | Registered: Aug 2005
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posted
I'm sorry, I don't know. I was just passing on the info on this thread, copied from another forum. Not close to the action myself.
My impression is that people who have had kids treated by Dr. J are definitely wanted. Also, people with kids who were refused treatment elsewhere, especially at Yale, are wanted. Beyond that, I don't know. Maybe someone who knows will come along and enlighten us.
Posts: 8430 | From Not available | Registered: Oct 2000
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Have you read the article on Dr J in Lymetimes???
The man's entire world revolves around his children that he treats.
Do you think a doctor, at 75!, who only cares about money would still be working full-time (and in his spare time) instead of being retired?
This is a man, who because he needs to keep his expenses down, lives above his own practice. And from what I've heard about it, it isn't the Ritz Carlton.
This man was given the choice to retire w/out any problems or fight. And is he taking the easy way out? Do you think most 75 yr olds would want the headache that Dr. J is going through? No, he's taking the hard way and he's fighting for his kids!
Posts: 1485 | From USA | Registered: Apr 2004
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posted
If you have ever been involved in a legal case, one might appreciate the frightening specter of a prolonged legal confrontation (not covered by liability insurance). It could potentially wipe out the savings, or even assets of even the wealthiest person. I saw my parents go through a simple civil case over liquidation of a partnership, and they lost almost everything to legal expenses. I don't have the impression that the doctor is out hat in hand looking for contributions, but if those who he has helped wish to help him in turn, I think that is their right and I applaud them for it.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
ANYONE questioning the need or honorability of this legal defence fund OR the astute clinical expertise and care provided by this doctor needs to read up on the situation regarding CHILDREN with Lyme and this doctor, otherwise, you cannot possibly speak knowledgeably to this situation.
This is not about disallowing 'opinions'.. there is a dire need to pull together and support this man, his practice ..and the CHILDREN under his care, and those yet to be treated.
Please do your homework before you cast doubts on THIS issue..
There are hundreds of children's lives at stake in this moment right now.
docjen is right, these proceedings can destroy ANY doctor's savings and career, just the proceedings themselves.
I know this man for years, and there is NO way he would ALLOW a fund to be organized if it weren't absolutely necessary (he treats children in need for free!!)...and knowing him, he sees it more as necessary for the CHILDREN than for himself.
He could have retired long ago if THEY were not his main priority.. he lives and breathes for their care...and yes, the office and his lifestyle is modest as can be and he spends twelve hours a day there, 7 days a week, never takes a vacation..
Just seeing this post headline is devastating to read.. that we are facing this situation right now with Doc J is a lethal blow to the heart of the Lyme community.
There should always be room for opinions on most subjects, however in this situation we have absolutely no room for ill informed doubts to be cast.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Whoa! Nobody said this was a cult!
Someone said they had been in a cult once.
Nobody called anyone names.
People have been expressing their views and reasons. That is a good thing.
I am pretty sure Dr. J. has not been charged with malpractice.
Lots of people over the years have contributed to the cause of doctors who have been fighting persecution by state medical boards. For a Michigan doc, and twice for NY docs as I recall.
Their insurance does not pay for defending themselves before a medical board. In the end,if the board decides to punish them,they usually have to pay a large fine as well as all the legal bills, maybe even for the whole thing.
Not to mention all the office hours they have lost, and the fact that the medical board can forbid them to treat the disease under question and monitor their practice, sometimes for years.
If you don't want to, or can't contribute, don't. Everyone has a choice.
posted
Please read my post more carefully. Your responses only prove my point.
I said that hostility to differering opinions creates a "cult-like appearance" to "outsiders," who then think Lyme patients are all extremist wackos ...and then, none of us get any help, and there is no money for research, and doctors dismiss us etc.etc.
I have been on abx for 5 years and my kids, esp. one of my kids, has suffered terribly. I can't believe that I was asked why I'm here. I've been posting here for 5 years (my e-mail recently changed, so # posts are down). This is exactly the type of rudeness I am talking about. I never said this was a cult. Have some subtlety in your reading, please!
Dr. Jones was foolish to treat over the phone. He should have called another physician closer to the patients in Nevada, who could have seen them and consulted. This violation of standards of care has now threatened the very practice which was the center of his life. This does not mean: don't donate. But it does mean that he may not win.
If I or anyone else says this, it does not mean we should stay off Lymenet for heaven's sake. Please understand, that in my opinion and others, Dr. Jones' conduct has hurt our (and his) cause. Nor does it mean that I don't care, My daughter saw Dr. Jones, so we know him personally.
What do I want? I want money for research and I want support and respect for Lyme patients. We need to earn a lot more credibility through our conduct for this to happen. Being nice to each other is a good start.
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Anyone who doesn't realize this needs to know:
If Dr J loses this case ALL OF OUR LYME DOCTORS ARE IN JEOPARDY!!! Your Lyme doctor, my Lyme doctor, your mother's Lyme doctor, your baby's Lyme doctor, you sister's Lyme doctor - EVERY SINGLE LYME DOCTOR WILL BE VULNERABLE.
And do not think for one second that they will stop with Dr J. If they win this case, they will go after other LLMD's. OUR LYME DOCTORS WILL BE PERSECUTED.
What does this mean? This means that you, myself, friends, relatives, etc, will have a harder and longer time being diagnosed, a longer and harder time being treated and a longer and harder time before eventually getting better.
It could mean that there will be no doctors for us to see at all who can diagnose and treat us correctly.
Some of us will become extremely sick. Some of us might die. Some will be children. Some will be Dr J's children.
That is this case in a nutshell.
If you don't understand that, then there is nothing else that can be said. I only hope you are happy seeing ducks cause that's what will happen to all of us.
Posts: 1485 | From USA | Registered: Apr 2004
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Doctor Jones' conduct has been impeccable. The reason for this attack is probably that he has begun speaking and writing more again.
These guys involved have despised his work for decades. All you have to do is read their writings and public statements, and things become quite clear.
We do not have the details of this case before us.. but I would bet my last dime he was not being foolish in his actions.
Without getting into details, I see no reason based on his treatment of thousands of children with Lyme -- to think he conducted himself in any way other than that which was best for the patient based on the circumstances and in his medical opinion, and experiece unsurpassed in the treatment of Lyme and other TBD's..
I also know there are many Docs who prescribe without seeing a patient.
Please, be careful about the statements you are making -- the last thing we all needs right now is division. Noone's asking anyone to get off LymeNet.. just to respect this doctor who HAS helped thousands, and the children under his care and learn think about this more before making derrogatory statements regarding this situation.
There is allot more at stake here than some seem to realize, and allot more credit due as well.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I am going to stop reading this thread, please note there has been a correction to the address! Going to keep the newer thread near the top because it is more comprehensive than mine.
Posts: 8430 | From Not available | Registered: Oct 2000
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Lydie
Unregistered
posted
Mo, I tried initially to keep my comments focused on the way dissent is handled on Lymenet.
I'm sorry, but I will now say that our experience with Dr. Jones does not match the constant accolades I hear. His procedures, both financial and clinical, were irregular in a lot of ways. But most importantly, we went to him in desperation because the tetracycline prescribed by another doctor made my daughter horribly psychotic. She was in a huge amount of emotional and physical pain. Dr. J. did not suggest anything for her, probably out of "professional courtesy." This was just appalling.He did not provide advice on medications, he did not provide referrals, he did not do anything for her other than order thousands of dollars worth of labs w/out asking if we could pay for them.
Again, out of desperation, we went one other time to his office, and had one phone consult, for second opinions, and he continued to say "continue with what you are doing." What happened to co-infections, and what happened to med combos? He didn't suggest backing off meds, or changing meds, or anything at all.
We had a right to a second opinion regardless of the relationship between Dr. J. and other doctors. He took our money but didn't give us anything in return. If he was uncomfortable second-guessing another LLMD, he could at least have told us to save our money. The fact that his deference to another MD was more important than my daughter's well-being is something I do not forgive him for.
Also, he spent a lot of the time talking about other patients and taking phone calls from other patients, and he left before the end of the time we had paid for, to help a baby with labs. He made my daughter feel like she was not important at all, and she has always refused to go back to see him.
If you act like you are on a pilgimage to God, maybe you get good care there, but we just wanted an ordinary second opinion. Instead, we left with thousands of dollars worth of medical costs. Luckily, I was able to cancel some of the labs, and have them done in my home state, and also our other doctors went to bat with insurance to help us get reimbursed.
We think there is something fishy about Dr. J. Therefore, we don't agree that his legal troubles will threaten other LLMD's necessarily, as long as they have been prudent.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Dear Lydie,
Sorry to hear that your experience with Dr. J did not go as you had hoped. I don't think the guy is perfect. I don't think his practice is perfect. I have disagreed with him and questioned him at times. (So far, he has been proven right!)
I am extremely grateful for what he has done for my son. But that does not make me want to follow after him no matter what he does. That WOULD be "cult-like" behavior.
But in this case, even not knowing all the facts, I doubt there is a breach of ethical medical conduct. At first, when I heard the charges, I went, "Uh oh."
But when I stopped to think about how my own non-LLMD PCP has prescribed or referred me without an office visit, or how hundreds (thousands?) of people get Viagra over the Internet with only a phone consult (heck, the doc doesn't even know for sure if they're men!), then I don't see the problem here.
And I agree with theskyking, there is a potential for a harmful legal precedent to be set here, and I will do my part to prevent that from happening.
Like Mo, I think a lot of it has to do with Dr. J's outspokenness of late. He was described in print as the head of the "Lyme mafia." (I remember thinking when I read that, watch out, Dr. J!)
And he spoke at the Boston hearing, where most of the testimonies revolved around Lyme kids under his care, and the parents' gratitude. I think that if he and Dr. Shapiro's views have appeared side by side in the press, that should be enough to preclude Shapiro from sitting on the review panel, due to conflict of interest.
However, to disagree with Mo, I think that it is healthy to have dissenting views presented here, as you have done, in a non-spamming, non-trolling manner. I think it helps to solidify and hone our viewpoint, if that viewpoint can weather a little discussion. I think we become more succinct in just what we believe, and what we want to do about it.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Lydie
Unregistered
posted
Shaz, this is an excellent, understanding, balanced post that has helped me a lot and should end the difficulties in this discussion, at least for me. I really appreciate what you wrote. Openness to different views is important,as you said, as long as they are expressed responsibly.
I was at the Boston hearing, actually. I did not get a chance to testify, but did a lot of work contacting our local legislators and media. I absolutely agree that this is political.
I have written in numerous articles to the Globe and locally that one of the most important things we Lyme patients need is courtesy, respect and compassion from physicians. The same is true here. I guess, after 5 years, I just get tired of all the emotion and all the discord. It doesn't seem to be getting us anywhere, and the trouble that has arisen for Dr. J. only shows how powerless we all truly are, still.
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
quote:Originally posted by Lydie: We think there is something fishy about Dr. J. Therefore, we don't agree that his legal troubles will threaten other LLMD's necessarily, as long as they have been prudent.
Yes it will.
I'm sorry that you don't think this way but I've been around and around and around just trying to get diagnosed, then treated and now trying to get something back from my health insurance - not to count how many ducks I went to or how many years it took me just to get diagnosed and I am well aware that this will affect LLMD's in every state.
I wish I could still think the CDC means well. I wish I could still think that Shapiro is misunderstood. I wish I could laugh at what I've been through and at the lack of knowledge and caring the majority of the medical community (doctors, insurance, John Hopkins, NIH, etc) have when it comes to tickborn diseases. I wish I could laugh when my primary physician tells me there is no way my husband contacted Lyme from me. I wish I could smile when she says I shouldn't be worried that my son has it cause there is no way he caught it from me during pregnancy and breast feeding.....the lack of knowledge should be criminal.
Now, I am no longer stuck in fantasy land. I am no longer ignorant and naive. I now know more about Lyme than the majority of the medical community and that is scary.
They will try to hide the truth as long as they can and will probably do everything they possibly can to keep the truth from getting out.
Lyme is the new aides.
LLMD's will watch this and if Dr J loses, it will scare them. And they should be scared if he loses. Some may stop practicing, some may just stop taking patients or be much more careful (and less proactive) with diagnoses and treatment. This WILL affect our LLMD's and our care!
And Shapiro and others WILL go after more LLMD's if they think they can win. Do you really think this will stop with Dr J? You think there is a personal vendetta only against one LLMD? Have you read ANYTHING Shapira has written or said??????????????? He is hostile to any person or doctor who thinks the way we do.
Posts: 1485 | From USA | Registered: Apr 2004
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I did not say we should not share differing opinions.. I asked that on this issue folks be sure and do their homework, and or consider the thousands of other patients and doctors who have been helped by this man, his writings, testimony, ect.
I find it disturbing to see someone choose this time, and this situation and thread to pick bones.
Incidentally, I don't believe I or many are on a pilgrimidge to God when our children are under his care, in fact...it takes allot of independant understanding of the infections and support of the child to get through this.. he is no miracle worker because of the nature of the beasts we are fighting in these diseases. Parental partnership is paramount, and there are often many complications..
But, right now, he is the ONLY one treating chronic Lyme to efficacy in children, and by and large he is astute, comprehensive and extremely caring in doing so. What other Doc will take these children and spend the evening prior pouring over every page of medical records, and test to the extent of uncovering so much applicable data, and then two hours with the child...and continue treating and providing care in this manner ..often to efficacy. What other doctor has shunned the financially motivated opression of these diseases and their impact on children and treated them for decades? In that sence, he is a national treasure for children with TBD's..who otherwise lepers in today's medical society.
I am very sorry you felt you had a less than satisfactory appointment..truly..
All I asked was that you please consider the entire situation here, which effects this entire community profoundly.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Dear Mo,
I don't know why proudpup and Lydie brought it up now, but one thing I know from posting on a few different issue-related boards over the years, is that if one person said it, there are a bunch of "lurkers" thinking it.
So unless posters go way over the top into nastiness in their posts, I don't mind engaging them in reasoned dialogue.
Having come back to posting here after a hiatus, it also seems to me that people are less tolerant than they were a few years ago. Perhaps we are all getting sicker on each relapse (I was), or we have all been stung a few more times by ignorance (me too).
For many people, the only homework on this disease and its issues that they have the energy for is to ask right here. I hope Lymenet will continue to be the center for compassion and information that it has been for so long.
Mo, I've read enough of your posts to know that you agree with that. Here's something of yours that I absolutely agree with...
quote:But, right now, he (Dr. Jones) is the ONLY one treating chronic Lyme to efficacy in children, and by and large he is astute, comprehensive and extremely caring in doing so.
I am looking forward to making a BIG STINK in CT, my old stomping ground. I guess I'd better wear a "shazdancer" name tag, because I'd love to meet many of you there. I cannot thank you enough for helping get the information out on the truth about Lyme.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Lydie
Unregistered
posted
There are other doctors who treat and heal children. Three of my children have been treated by another doctor, who is covered by insurance, in fact. Tow are totally better, the third is almost there.
Every time people get up and talk emotionally about how Dr. Jones is the only one etc.etc. - as they did at the Boston hearing- it hurts our cause. Don't people understand that our advocacy loses legitimacy if we keep emphasizing the fact that only one doctor in the entire world treats kids properly?
Dr. Jones hurt my daughter, by not doing anything for her when she was desparate. He neglected to do anything out of a political desire not to offend another MD. In that, he is no different than the rest of them.
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quote:Originally posted by Lydie: There are other doctors who treat and heal children. Three of my children have been treated by another doctor, who is covered by insurance, in fact. Tow are totally better, the third is almost there.
Every time people get up and talk emotionally about how Dr. Jones is the only one etc.etc. - as they did at the Boston hearing- it hurts our cause. Don't people understand that our advocacy loses legitimacy if we keep emphasizing the fact that only one doctor in the entire world treats kids properly?
Dr. Jones hurt my daughter, by not doing anything for her when she was desparate. He neglected to do anything out of a political desire not to offend another MD. In that, he is no different than the rest of them.
Lydie,
Do you let Dr. Jones know he hurt your daughter? Did you let him know how you were feeling before you left his office or at a later point?
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I agree that this case will just be the beginning of the cases that will be brought against other LLMD's..... When I think of all the tests my hubby was put through, finding an LLMD was a Godsend for us. To finally get treatment was wonderful.
To those who want to financially want to support the doctor, I say go for it. What you choose to do with your own money is your business!
I also find it insulting to be called "brainwashed" because there are some on this board who wish to support the doctor.
Bitterness is not a good quality. Frustration I can understand, but bitterness? Not good, imho.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Doctor Jones HAS BEEN the only doctor for thousands of children with TBD's.
I'm very glad you have had other physicians who provide better focused care for your daughter's circumstances, for then you are fortunate in that regard.
(your daughter has diabetes and Lyme, correct? I know that is complicated and I am glad you have doctors who are helping)
I know your struggles have been long and hard, as have many of ours.
Also, your daughter is in her teens, right? A COUPLE OF LLMD's will treat kids in their teens..... but virtually none (with just a couple of exceptions, Doc C in MO being one of them) will treat/diagnose young children.. and fewer yet, if ANY..will treat babies, toddlers, and pregnant mothers to efficacy .. some will with Doc J as consult.
Clearly, you feel strongly enough regarding your two appiontments with him to strongly express your dissatisfaction at that juncture..even here on his legal defence thread.. I can see where you and your daughter may have been put off that the Doctor took other calls during your visit...that does happen. Heck, one of them could have been mine when my son was near death and we were in the ER.
He gets calls like that from time to time.. various emergencies or contact with other Docs who have a limited contact time, or confused and distraught parents. I personally have never minded because we always have at least an hour and never are told to leave if there is more to cover beyond that hour, and also considering the nature of his practice.
However, again, what I asked is that you consider the circumstances of thousands of others, the limitations in these children and their families, especially the most severely afflicted.. finding comprehensive care for TBD's.. and some respect for his success rate in thier long term care. For many, initiation of care and well documanted diagnosis is critical to them .. in school, medical isues..even if they move on to local Docs...and many stay with him.. traveling far and wide.
We need to pull together as a community, his value is indescribable, enourmous, stupendous..there is no disputing that -- it is what it is over decades... regardless of your personal opinion based on limited experience. Respectfully..in your posts, you greatly underestimate the impact on this community should we loose this Doctor.
Please respect the situation for that children he has, and is... helping to RECOVER...and the ones who will need him in the future.
Mo
[ 16. December 2005, 01:45 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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Lydie
Unregistered
posted
First of all, I originally just made a plea for more tolerance on this board. Then, because of the response, I felt I should explain. I did not mean for this to snowball, and I keep trying to end this.
The issue of phone calls was extremely minor. We've dealt with all kinds of stuff w/MD's and this barely registered on my radar. It did affect my daughter, who was then 11, but I have much bigger problems with Dr. J.
My daughter was in extreme emotional pain from a biploar illness that cycled ten times/day. She had lost the use of her right wrist, had extreme eye and head pain, couldn't stand up for long, and had just had two surgeries due to Lyme. She couldn't function cognitively. Her ANA was 1:1280 and her antiDNA was positive, which is supposed to be definitive for lupus.
The psychosis was getting extremely hard to manage, and Dr. D. was away. Our primary care physician agreed to send my child to Dr. J., because things were at an emergency point, and we got an appt. through a cancellation.
The night before her first appt. with Dr. J. we stayed in a hotel. It was a very lonely and painful night. I held her and wrapped her in blankets when the depression cycles hit, and we watched ice-skating on tv, as a distraction. We were desperately hoping Dr. J. could help.
On that and two other occasions (we kept trying) he did not help at all. No change in meds, no advice to try backing off a little, no talk of co-infections, no understanding of diabetes.I asked for advice on psych, or neuro referrals, and got none. He left us in the room to do labs on a baby, and never came back.
On my other two tries w/him, his only comment was "keep doing what you are doing." My daughter was having a lot of problems and clearly needed more help.She was on one antibiotic at that time.
I have been told that this behavior can be accounted for by the fact that we were using Dr. D., and Dr. J. would not go against him. But second opinions are a standard part of medicine. Is Dr. J. that political? And, I had told him in our first appt. that we would change doctors and see him, if he had different ideas about her treatment.
I ended up taking my child to her regular physician and saying that I wanted to try taking her off tetracycline, and substitute amox. Her psychosis ened within two days. Not a single doctor suggested this, amazing.
I am not bitter, and I did not set out to say any of this. People in Lyme groups, at least the ones I have experienced, are monolithic in their thinking. We need to be tolerant- we have all had different experiences.
AIDS tactics will not work for us. AIDS patients were DYING by the thousands. We need different tactics. I think that the way Lyme doctors and patients are treated as "outlaws" needs to change: and part of that change needs to come from us. Noone has been more abused by the system than I have (Mo knows this) but we need to keep working within it so that knowledge of Lyme infiltrates.
Dr. J. may get restrictions on his practice that say he can't prescribe over the phone. My daughter's diabetes MD was accused twice of sexual inappropriateness with minors, and he went before the Board and has been told to provide a chaperone. That's it. So this may not be a disaster for the Lyme community.
If people write letters that are not too emotional and that don't contain endless personal details, it will help Dr. J. Perhaps a reasonable request that Shapiro step down for this case would be heard.
The Lyme hearings and support groups depress me more and more. The "outside" world just thinks we are all nuts, and sometimes we give them stuff they can use to buttress that opinion.
Everyone, right now, will (appropriately) focus on supporting Dr. J. But let's also think about changing a situation in which he is the ONLY ONE. And also changing a situation in which many people w/Lyme can't afford good care.
In the meantime, we feel like we saw the emperor with no clothes on. Apparently he is well-dressed for everyone else. I'm honestly glad of that. And my daughter is doing quite a bit better now anyway.
I suggest that we stop this thread, because adding to it just makes it go "up." I've been off Lymenet for a few months and am going back off.
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
My grandfather was a judge, my Dad was a lawyer--I don't have any legal education other than that--but if they can "get" Dr. jones--ALL the LLMD's will go down--all of them, the good, the bad and the ugly.
whatever your personal feelings about Dr. J--a legal precident is a hard thing to turn around and it will be against ALL docs--not just one or two...that is why we work so hard to get new Lyme laws in different states--water moves down hill.
Why do you think people get so upset when one pro-gay law passes in one state? Because if it is legal in one state--why isn't legal in another? (I'm just using this as an example).
Ya'll need to get over your petty personality problems or ill will over bad treatment--doctors are people, not gods--they screw up every day and we all roll the dice and hope they don't screw up on us! Anyone here not get through a day without making a mistake? Anyone making there life mission helping people?
I'm not saying Dr. J is perfect--I'm saying if he can't practice in Connecticut--you think doctors are going to be allowed to treat Lyme in Knoxville (where?)?
Get it?!
What is the quote about they came to get my neighbor and I didn't try to stop them--and there was no one to stop them when they came to get me
My grandma--who died last spring--wouldn't allow us to tell anyone we were indian--'cause her Mama remembered when they came and took the Cherokees--living like Europeans, worshipping a Christian God, farming, and Andrew Jackson sent TROOPS to get those people in a LAND GRAB (the Supreme Court told Jackson he couldn't have the land and Jackson said for the supreme court to send their troops to stop him! And no one stopped them! My grandmother's fear was if they could get the full indian's land, the half indian's land would be taken next.
Bad things happen and if we don't stop them then we get the government we deserve...oh and after the Trail of Tears the federal government came back and got our land by way of TVA, DOE and the national forest...
Sorry for the tangent. You have to draw a line in the sand sometimes...
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
quote:Originally posted by Linda LD: My grandfather was a judge, my Dad was a lawyer--I don't have any legal education other than that--but if they can "get" Dr. jones--ALL the LLMD's will go down--all of them, the good, the bad and the ugly.
whatever your personal feelings about Dr. J--a legal precident is a hard thing to turn around and it will be against ALL docs--not just one or two...that is why we work so hard to get new Lyme laws in different states--water moves down hill.
Why do you think people get so upset when one pro-gay law passes in one state? Because if it is legal in one state--why isn't legal in another? (I'm just using this as an example).
Ya'll need to get over your petty personality problems or ill will over bad treatment--doctors are people, not gods--they screw up every day and we all roll the dice and hope they don't screw up on us! Anyone here not get through a day without making a mistake? Anyone making there life mission helping people?
I'm not saying Dr. J is perfect--I'm saying if he can't practice in Connecticut--you think doctors are going to be allowed to treat Lyme in Knoxville (where?)?
Get it?!
What is the quote about they came to get my neighbor and I didn't try to stop them--and there was no one to stop them when they came to get me
My grandma--who died last spring--wouldn't allow us to tell anyone we were indian--'cause her Mama remembered when they came and took the Cherokees--living like Europeans, worshipping a Christian God, farming, and Andrew Jackson sent TROOPS to get those people in a LAND GRAB (the Supreme Court told Jackson he couldn't have the land and Jackson said for the supreme court to send their troops to stop him! And no one stopped them! My grandmother's fear was if they could get the full indian's land, the half indian's land would be taken next.
Bad things happen and if we don't stop them then we get the government we deserve...oh and after the Trail of Tears the federal government came back and got our land by way of TVA, DOE and the national forest...
Sorry for the tangent. You have to draw a line in the sand sometimes...
Oh, and Dr. jones looked at my children's blood work and confirred with my doc (who has never treated children with LD) and he never asked for a dime.
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Lydie
Unregistered
posted
This post came up by mistake...couldn't access page 2. There is a storm here that is affecting service. As long as I am on again and can't delete this...one last time:
Please read my posts completely. I am not focused on bashing Dr. J. (despite his abandonment of my child), I am focused on trying to change the culture of our advocacy community because it is not effective. I am getting a lot of private messages of support. These people should feel comfortable posting here.
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Dr. J will just be the beginning
"First they came for the socialists, and I did not speak out because I was not a socialist.
Then they came for the trade unionists, and I did not speak out because I was not a trade unionist.
Then they came for the Jews, and I did not speak out because I was not a Jew.
Then they came for me, and there was no one left to speak for me."
Pastor Martin Niemoller (written in 1946 after he had been imprisoned by the Nazis)
Posts: 1485 | From USA | Registered: Apr 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
am I the only one that can't read this? it looks stuck!
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
something is definitely wrong with this thread
Posts: 1485 | From USA | Registered: Apr 2004
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Lydie
Unregistered
posted
What happened to the second page of this thread? I am posting to see if anyone else can't access it. If I click on the "printer-friendly" version, I an still see the last few posts, but that is the only way.
Have the moderators done something so that the 2nd page is not accessible?
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