posted
I know it is hard to shift gears when you are trying desparately to get answers to immediate medical questions here.
Please, though, open the threads regarding the case of Dr. Charles Ray Jones. His future could be key to yours!
As always, please also be aware that the intention of some who post on Lymenet may be to distract and confuse rather than to illuminate the situation.
Whatever the intent, please take care to focus on what we, as a community, need to do next.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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bettyg
Unregistered
posted
PLEASE be sure to read Ellenlube's posts about Dr. J, since Dr. J. appointed her to be the go between this board & him. She will post all the up-to-date stuff.
Her posts hasve been made a "feature" at the top of medical & support sections, page 1.
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It is my understanding that the 'featured' thread by Ellen is primarily to be streamlined current info and action alerts, as she is the communicator between Doc J and us.
and that rallying in support threads on the moving board is fine, and not only that.. a good idea!!! Not that Ellen is the only one who can post on the issue or that there is to only be one thread, but that she is the one designated to communicate current info from Doc J.
Plus, I think that will leave a cleaner thread in the 'featured' area.
I'm positive that is the case.. but I will double check this again with Ellen. OK?
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Mo,
You are very right.
After being fussed at about my post, (quote) in GENERAL about Dr. Jones--I asked Ellen herself if there was a problem with my post.
she replied (and I don't think she would care that I shared this):
QUOTE I think that post is great. We all need to speak up to protect human rights. UNQUOTE
O.K?
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Firewith,
Why would anyone want to distract and confuse us on this board?
I applaud the doctors who are taking the time to learn about this disease which is epidemic and to treat it as best they can. I don't want to see any of them sued for their efforts.
However, in defense of their collegues who are bringing them before the board, could it be they may really believe the longterm use of the antibiotics are hazardous to the patients?
Now I can definitely see a journalist gaining somthing by using our posts to enhance his story, but aside from that, who stands to gain from distracting and confusing us?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Just to let you know in advance, I don't have the infinite patience of some of the incredibly wonderful responders on this board, but I will try to reply briefly.
While I can understand that doctors who have had little exposure to the unbearable pain and ravages to health, energy, cognition, and personality that can result from late or indequately-treated Lyme disease might be reluctant to treat aggressively, it is extremely difficult for me to understand why those who presumably have had a close encounter with this fiendish illness would not conclude that the risks of treatment are far lower than the risks of not treating.
As to who would stoop to playing "confuse-a-kitty"- perhaps a couple of books on advertising or public relations or political campaigns would answer that question for you. In particular the work of Bernays (sp?) (cousin of Sigmund Freud)is enlightening.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
It's incredible to me that anyone with this disease has to ask why would anyone want to confuse us. With tests that are worthless, a vaccine that does more harm than good, insurance companies refusing to pay for treatment, inadequate treatment is common, doctors refuse to even consider Lyme, huge fortunes to be made, egos as big as all outdoors etc etc etc one has to be extremely naive to even ask the question.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Well Vitch and Fight,
It is easy to see how you chose your names.
Are you well yet?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Please see the latest update posted Feb 1 from Ellen on Dr. J's case.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
up
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Lydie
Unregistered
posted
The reference to those who try to confuse etc. is probably to my posts. and is typical of Lymenet's response to differing points of view. This is unfortunate, since Lymenet is very helpful in many other ways, but diversity of opinion is not valued.
I have expressed the opinion that by prescribing antibiotics over the phone, Dr. Jones violated medical standards and thereby jeopardized his own practice. By taking care of this one family (over the phone), he may have jeopardized all the other kids in his practice. The medical board should focus only on this issue, and, if they discipline, should simply put "limitations" on his practice that prohibit him from doing Rx' s by phone.
I'm sure he did this because he could not stand not helping someone, but there might have been alternative ways to help the child/ren without endangering himself, such as finding a local MD to work through.
In addition, I have expressed the opinion that by constantly talking about Dr. J. as the "only doctor who can care for children with Lyme," we are making him look like a quack, and that folks should be careful with this. Maybe use the word "best." People unfamiliar with or hostile to Lyme will say, if he is the only one, then the science must be wrong- otherwise more doctors would be treating in the same way.
And describing him in messiah-like terms really puts him in the realm of quasi-religion, which is where a lot of people think we belong. (I'm not going to use the cult word.)
Please, I am not saying this is my take- my ENTIRE FAMILY has Lyme. I am talking about getting outside our narrow little world of sickness and seeing how others see us.
I have also said, as have many people, that our letters should be short and factual, and that, at hearings (one of which I attended) the long, emotional, personal stories do not do us a bit of good. Many on Lymenet probably do this already, but there wasn't a single effective Lyme testimony at the hearing I went to.
Finally, I have expressed the opinion that Dr. J., whom one of my kids has seen, will die relatively soon. He is old, sick, overworked, and, now, stressed. I asked if he had trained anyone, or delegated, and who was going to take his place in pediatric Lyme care. Mo and others have said, yes, he has trained others. The point is, beyond the effects of this case, it is pretty certain that Lyme sufferers will have to do without Dr. J. at some point fairly soon.
I have been in treatment for 5 years, my daughters have been horribly sick, one of them has lost a good part of her childhood. I do not appreciate being treated like an enemy, or a political opponent, when I am trying to suggest some common sense in Lyme advocacy.
The single biggest obstacle to our health is the perception that we are all crazy. All teh Lyme sufferers that I know have dealt with this perception, certainly including me. We patients, and our doctors, need to be impeccable in our approach to our illness, and seemingly small transgressions such as Jones' will certainly be seized upon by the "other side," probably with success.
I have suggested the model of the Juvenile Diabetes Foundation, with whom I work. The AIDS model does not work, because the death rate from Lyme is not apparent of dramatic. I am suggesting we be less dramatic and more strategic.
Finally, in case you haven't noticed, nobody who doesn't have this disease CARES. The Medical Board, insurance companies, legislators, extended families, schools, disgruntled spouses....it really comes down to money and liability for most of the players in this drama, not the well-being of patients.
Most Lyme advocacy seems to be based on the premise that someone cares, and this scares me. The Medical board will not excuse a violation of medical standards, no matter how much everyone loves Dr. J. or how sick our kids are.
I am not trying to distract or confuse, and I think Lymenet should be more open to a deeper, even sometimes contentious, look at these issues.
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This is not about not wanting diversity of opinions.
These threads are in support of Doctor Jones during his hearings. These threads are in support of the children with Lyme who need him.
Please respect that and discuss your personal issues and opinions on another topic. Through the years you have expressed disdain toward Doc J and that's fine, just please respect the rest of the children.
UNREAL!! You derailed several other thread as well. Just start a new topic if you feel this must be discussed, please. Every point you are raising you posted in most of the other threads repeatedly as well!
Time to rally around the man who has devoted his life to kids with TBD's.
Let's put our arms around him and support him through the hearings.
His legal team is working fervently and are building a strong case.
He needs funding.
Yes, it's good to keep the support letters factual - absolurely, and that is what the attorney and Doc J have asked us to do from the get go, and I'm sure most of us have complied.
Right - he is not the ONLY pediatric Doc specializing in Lyme..there might be one other fairly new one. Perhaps two.
I responded to this before..
He is the only Lyme pediatrician who has treated thousands of cases of chronic Lyme and other TBD's in children to efficacy.
OK? That's a big deal.
His writings and his training, talks, and working in tandem with Docs around the country on cases has advanced awareness and education impressively.
If you think he made a mistake...FINE. That's done and this is today's business.
He and the kids need our help, and he is NOT going anywhere for a long time. His words. He's fighting.. not just for himself, but because he also knows what this will mean for the treatment of TBD's across the country, children and adults alike.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Lydie
Unregistered
posted
I will continue to add to threads when posters, like the first one here, dismiss other opinions.
I have not "derailed" threads, but have added to them like anyone else.
We observed a lot of irregularities in Dr. J.'s office, some of which hurt children. He needs to be more careful, no matter how well-intentioned he is.
Most of all, we need more respect from the medical establishment, and hysteria won't accomplish that.
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posted
A reminder that what we need to do next is to send a contribution (or a second or third one) to Dr. Jones' legal support fund.
If I had to choose what "fault" to have in a pediatrician, I would be happy to choose one who consistently put children's needs, no matter their circumstances, over other considerations.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I had the opportunity to speak with Dr. Jones recently. I will not repeat on a public board what we spoke about, but I will say that he is well aware of all the issues concerning his case.
I will also say that, after speaking with him, I am extremely proud to support this man as he fights the medical board on behalf of his practice, and on behalf of the children who need his care.
I hope you will be generous in your support, with your pocketbook, and your prayers.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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The tactic that we see currently being used in public affairs of an adversary trying to turn one of an opponent's finest qualities into a negative is really lamentable. That it should be used in a medical setting is truely deplorable.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Lydie
Unregistered
posted
I have received many private messages of support , and have to ask why these messagers are so afraid to post their true feelings here on Lymenet. The "party-line" requirements on Lymenet are part of the same problem that is stalling Lyme advocacy in general. People should not feel afraid to post here.
An inability to consider and integrate different points of view usually ends up segregating people from the larger society. Demonizing "opponents" such as Shapiro or Steere will not help, and causes the "other side," in turn to demonize Jones et al. The more polarized this Lyme war gets, the more we patients will fall through the huge gap in between.
We can keep doing these emotional, desperate, fund drives for embattled doctors. Clearly, the way things are, this is necessary. But we need to do a lot of other work to gain more respect for this illness, in the medical community and even in our own families. Maybe then, these fund drives won't be necessary anymore. We also need a lot more funds more research.
Has anyone recovered enough from their own illness to organize a Walk to Cure Lyme in their city, just as an example? How about a children's campaign in Washington D.C? How about delegations of families visiting local legislators annually (with photographers from the local papers present). How about a few fancy galas with a celebrity musician who has had Lyme him/herself providing the music. After these things start happening, Oprah would probably do a show, but not now, when we are perceived as "crazies."
The scientists on the "other side" truly believe that long-term antibiotics are harmful, and who can refute this? I would be on the "other side" myself, if I didn't have the awful first-hand experience of slurring my speech when I skip two doses. The cases of my children are not as clear cut, and involve autoimmune illness, and as everyone here knows, it is difficult to find a clear path. We need more knowledge.
Perhaps if we were more open-minded, the "opposition" would be too, and scientists could start working together. In the meantime, people will use private messaging because this site is not a comfortable place to explore issues.
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posted
-------------------------------------------------------------------------------- DEar Members of the List:
I do not normally become involved in debates about doctors and what they did nor did not do that was right or wrong. However, the opinion expressed on a current thread seems to me to ignore the real point of what is going on with Dr. Jones and the very real danger that it poses for all of us. While I do not wish to get involved in personal denunciation I can only characterize the assesment of the writer as naive and superficial, indeed simplistic. May I suggest that the writer needs to wake up and smell not the roses, but the landfill.
I would agree with her that if the facts are such that Dr. Jones prescribed a treatment without seeing the patient, this is a potentially serious problem. It should not be done. However if the alternative is that the child or patient in question will not get treatment of any kind for a period of four to say six months, the length of time that if would take to be able to see Dr. Jones then it seems to me a valid medical argument should be made that given the enormously dmamging nature of the infection to delay treatment for that length of time is the greater of the two evils.
As for finding another doctor to treat the child that is the center of the complaint and action against Dr. Jones, has the writer actually gone out and tried to find a doctor who even knows what lyme disese is, much less one who has even the remotest idea of how to test, diagnose or treat it? All I can say is, good luck. Because Lady, you are going to need it, lots of it
The writer has suggested that the medical board should simply discipline Dr. Jones and forbid him to make prescriptions over the telephone. I must in all candor state that that is not what this board or doctors is after. They want to destroy Dr. Jones. Pure and simple. They do not want him praciticing medicine. Period. They further want to use him as an example of what is going to happen to anyone who transgresses medical dogma and orthodoxy. Any one who violates the medical infallilbity on lyme disease is to be destroyed. He is simply part of a larger campaign. The writer has simply ignored that brutal and very ugly fact.
The cruely, not to mention egos, ignorance and malice in such a postition are mind boggling. And let us not forget this little matter of money, lots of it. The argument has been advanced that they want to stop the overuse of antibiotics. That would seem to be a laudable goal. Except that long term antibiotics has been shown to be in a significantly large number of cases to be the only thing that can help or even cure this horrible disease.
Why is it that in other long term and intractible infections doctors even today do not have a problem prescribing long term ntibiotics. If you have TB and are on antibiotics and you do not take them in South Carolina you not only can, you will go to jail. They will not only lock you up, there will be somebody to come in and make sure that you take and actually swallow them thar pills.
The plain truth is that conventional medical practice is twenty years out of date in its understanding of this incredibly insidious and deadly illness. People out there are dying from an incurable bacterial infection ahd the medical establishment is not even keeping statistics on it. The CDC has admitted that the statistics on lyme disease are totally unreliable. The testing is totally unreliable. The conventional medicine cannot diagnonse the disease. And refuses to do so. Further they do not have a clue about how to treat it. But they can and will ruin any doctor who transgresses against their failed medical dogma.
Of course, what they are doing is not medicine, it is not science. It is voodoo. These doctors should simply strip down, put on a loin cloth and nose plug and paint themselves blue for all the good, the little good they are doing.
Let us assume that the medical establishment succeeds in doing what they fully intend to do. What will be the effect. Dr. Jones has a body of experience and understanding of this disease, particularly its manifestations in children which is irreplaceable and literally beyond price. That kind of clincal understanding is as rare as the sight of the morning star at high noon. He has helped over 8,000- yes, read that again people, EIGHT THOUSAND children with a deadly crippling disease. The CDC, I remind you, has said the lyme disease is a clinical diagnosis. Something the doctors keep on ignoring, to our great loss and peril.
I repeat Lyme Disease Can Kill You. The doctors who say it can be cured with a month or so of antibiotics are fools who do not what they are talking about. Why should anybody pay them one grain of attention.
So what happens if they drive Dr. Jones and Dr. Jemsek out of practice. Simple. You are going to have a much much harder time getting any kind of accurate diagnosisl, much less treatment in the future.
As for the children who will lose their doctor. They will not go back to conventional medical practice, which has failed them miserbly. If they did it will not only not do them any good if they do, it will be a total waste of time and only add to their suffering. As for the comment the Dr. Jones is old and has he or has he not trained somebody to take his place, such a truly callous comment is unworthy of reply.
So it is not simply a case of one patient, and one child. This case directly effects all of us. and if Dr. Jones is destroyed lots of people are going to get sick, suffer horribly and many of them are going to die. Think about it. Thomas Parkman
-------------------- Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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Lydie
Unregistered
posted
You are misreading my comments, which just proves what I am saying. I am unfortunatley extremely experienced in the difficulties with Lyme diagnosis, treatment and politics, and have probably suffered more persecution at the hands of the medical establishment than Dr. J, frankly. I and my three kids, ages 13-19, all have Lyme, and two of us have been extremely sick for 5 + years. So you are preaching to the converted.
I am just trying to say that the politics of anger are not working for us, the emotionalism of current Lyme advocacy is counter-productive, as is this hostility to any depth of discussion or difference of opinion(as witnessed by this diatribe, which distorts everything I said) . Strategies need to change.
I am trying to put this into practice by writing educational articles for newspapers, going to hearings and so on, but despair at the lack of progress in general with Lyme advocacy. Apparently, it is not going to change.
I stay off Lymenet for months at a time, and just checked back on something. I will not return for awhile anyway, so just let this thread move down and off the page.
I am editing to add that the child in our family who has been extremely sick with Lyme for years, also has some other serious medical problems, totally apart from Lyme (although they interact) which means that we NEED a few mainstream doctors and we are forced to work WITH the system at times. We do not have the luxury of working outside of the medical establishment. It is a very tricky situation, and it is horribly scary to go to some of these MD's and mention Lyme- we have been abused. The continued polarization of Lyme-literate and non-Lyme literate medical care poses problems for us and many others, and I am urging advocacy that atttempts to build bridges that lessen this gap, because we have no other choice.
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posted
This particular fight for Doc J. is critical.
We are not 'angry', but standing up for truth.
Thomas Parkman, profoundly eloquent as always!
DEar Members of the List:
I do not normally become involved in debates about doctors and what they did nor did not do that was right or wrong. However, the opinion expressed on a current thread seems to me to ignore the real point of what is going on with Dr. Jones and the very real danger that it poses for all of us. While I do not wish to get involved in personal denunciation I can only characterize the assesment of the writer as naive and superficial, indeed simplistic. May I suggest that the writer needs to wake up and smell not the roses, but the landfill.
I would agree with her that if the facts are such that Dr. Jones prescribed a treatment without seeing the patient, this is a potentially serious problem. It should not be done. However if the alternative is that the child or patient in question will not get treatment of any kind for a period of four to say six months, the length of time that if would take to be able to see Dr. Jones then it seems to me a valid medical argument should be made that given the enormously dmamging nature of the infection to delay treatment for that length of time is the greater of the two evils.
As for finding another doctor to treat the child that is the center of the complaint and action against Dr. Jones, has the writer actually gone out and tried to find a doctor who even knows what lyme disese is, much less one who has even the remotest idea of how to test, diagnose or treat it? All I can say is, good luck. Because Lady, you are going to need it, lots of it
The writer has suggested that the medical board should simply discipline Dr. Jones and forbid him to make prescriptions over the telephone. I must in all candor state that that is not what this board or doctors is after. They want to destroy Dr. Jones. Pure and simple. They do not want him praciticing medicine. Period. They further want to use him as an example of what is going to happen to anyone who transgresses medical dogma and orthodoxy. Any one who violates the medical infallilbity on lyme disease is to be destroyed. He is simply part of a larger campaign. The writer has simply ignored that brutal and very ugly fact.
The cruely, not to mention egos, ignorance and malice in such a postition are mind boggling. And let us not forget this little matter of money, lots of it. The argument has been advanced that they want to stop the overuse of antibiotics. That would seem to be a laudable goal. Except that long term antibiotics has been shown to be in a significantly large number of cases to be the only thing that can help or even cure this horrible disease.
Why is it that in other long term and intractible infections doctors even today do not have a problem prescribing long term ntibiotics. If you have TB and are on antibiotics and you do not take them in South Carolina you not only can, you will go to jail. They will not only lock you up, there will be somebody to come in and make sure that you take and actually swallow them thar pills.
The plain truth is that conventional medical practice is twenty years out of date in its understanding of this incredibly insidious and deadly illness. People out there are dying from an incurable bacterial infection ahd the medical establishment is not even keeping statistics on it. The CDC has admitted that the statistics on lyme disease are totally unreliable. The testing is totally unreliable. The conventional medicine cannot diagnonse the disease. And refuses to do so. Further they do not have a clue about how to treat it. But they can and will ruin any doctor who transgresses against their failed medical dogma.
Of course, what they are doing is not medicine, it is not science. It is voodoo. These doctors should simply strip down, put on a loin cloth and nose plug and paint themselves blue for all the good, the little good they are doing.
Let us assume that the medical establishment succeeds in doing what they fully intend to do. What will be the effect. Dr. Jones has a body of experience and understanding of this disease, particularly its manifestations in children which is irreplaceable and literally beyond price. That kind of clincal understanding is as rare as the sight of the morning star at high noon. He has helped over 8,000- yes, read that again people, EIGHT THOUSAND children with a deadly crippling disease. The CDC, I remind you, has said the lyme disease is a clinical diagnosis. Something the doctors keep on ignoring, to our great loss and peril.
I repeat Lyme Disease Can Kill You. The doctors who say it can be cured with a month or so of antibiotics are fools who do not what they are talking about. Why should anybody pay them one grain of attention.
So what happens if they drive Dr. Jones and Dr. Jemsek out of practice. Simple. You are going to have a much much harder time getting any kind of accurate diagnosisl, much less treatment in the future.
As for the children who will lose their doctor. They will not go back to conventional medical practice, which has failed them miserbly. If they did it will not only not do them any good if they do, it will be a total waste of time and only add to their suffering. As for the comment the Dr. Jones is old and has he or has he not trained somebody to take his place, such a truly callous comment is unworthy of reply.
So it is not simply a case of one patient, and one child. This case directly effects all of us. and if Dr. Jones is destroyed lots of people are going to get sick, suffer horribly and many of them are going to die. Think about it. Thomas Parkman
[ 26. February 2006, 12:35 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
It does seem to be the same person continually who wishes to blame the victims in this controversy. I guess it is easier to find fault with the powerless. Her suggestions about what we should be doing instead have actually all been tried, perhaps she is not as well informed as she should be.
And I would wonder who has been sending letters of support to her privately. Is this true? Are these people informed about the problems or just trying to "see both sides?" This is a battlefield situation, where nice debates and dotting all the I's and crossing all the T's properly are not even appropriate. Why is it always easier for the above writer (and her friends?) to see that this entire situation has been brought about by the medical establishment failure to deal with tickborne diseases. Does she not understand that people are going to the cemetery unnecessarily because of this?
It appeared from a previous post of hers that this opinion of the doctor in question was based entirely on not being treated as the queen she thinks she is on her one trip to his office. Not surprising that in an office crushed with patients and a doctor who until recently was working 7 days a week, that one newby might feel like just one of the crowd, and not the special person she thinks she is.
Sorry, my ire is really up on this. I think it would be good if she came here at times that did not involve crisis and posted on ordinary threads. There is a constant parade of sick and confused newbies on lymenet who need help from old hands. More need help than are giving it. So, how about helping for a change?
Too bad they cull old threads because I would be willing to bet that she was also a naysayer when Dr. B was up before the board on charges. If he had lost, none of us would now be getting any treatment. This same kind of campaign has rolled on for years now, trying to take down every doc who treats late stage lyme adequately and every lab that produces positive test results at an inconvenient rate that does not suit ins cos.
This is not about one case. It is the pattern. If you don't believe this, you are not informed and should read these articles, then send a check in support of Dr. Jones:
posted
And here is a previous thread about the star witness against Dr. Jones. I don't see any posts by Lyddie and her friends here. I guess what Shapiro does is less egregious in her eyes.
posted
I have been posting helpfully on Lymenet for years. I was previously Lyddie, not Lydie, due to an e-mail change. Lately, I have not been on much, but I used to post a lot if there was a question I could comment on.
I was not offended in Jones' office (my teenager made that comment about Dr. J. 's treatment involving talking about other patients). My daughter, who was 11, did not like Dr. J. at all, and thought he should not talk about other patients in her presence, or take phone calls and talk in front of us. She was little, and had had, unfortunately, a lot of experience with other doctors, and found his behavior strange, compared to what other doctors do. I believe there are things called privacy laws, which he did not adhere to at all.
I mentioned this as evidence of Jones' enthusiastic, but irregular practicies. Clearly, he is impassioned about helping, but also clearly, he was not paying attention to the usual standards of medical behavior, such as confidentiality. (To imply that this offended me because I am a "queen" is obscene)
It is true however that we have had specific serious concerns about Dr. J. He ordered thousands of dollars of tests without my consent, which almost caused financial disaster for us. Our local MD helped us by pleading with insurance. We wondered if he was taking kickbacks from the labs.
Much worse, he took substantial funds from us for three appointments and three phone consults, and never suggested any change in protocol, due to deference to his relationship with her Boston doctor, who is often ciriticized here. He kept saying "don't change anything." My daughter was in crisis, psychotic, had an ANA of 1:1280, moaning in pain, had lost the use of her right arm, etc.etc. and he offered nothing. No talk of co-infections, either. This neglect of duty caused her years of suffering.
But he did take our money, and lots of it. Even insurance companies allow that second opinions are a good thing. The fact that she was seeing Dr. D. is no excuse for not providing services that we had paid for.
In New Haven, we got along fine with him in person, everything was friendly, we had high hopes. So it's not like there was any kind of personal animosity at all, in either direction.
Apart from this, the conduct of advocates and patients at the Lyme hearing in Boston that I witnessed has convinced me that we will never gain the respect that is necessary for more widespread, proper care for Lyme.
These angry, nasty posts from people on Lymenet only prove my points. Characterizing me as "Lydie and her friends," when I mention getting private messages (from complete strangers with whom I do not correspond at all) and as a "queen" is the worst type of character assassination. This behavior is exactly what I am trying to comment on.
I will repeat, my family has been hurt more than any of you, by the "other side." I could respond to some of the things that have happened to us, by also polarizing and huddling with "our side." However, organically, the solution lies in doing the opposite: we need more sophisticated advocacy within the system.
It seems that my own posts are now getting angrier, and it is a nice day out. I am not going to add any more to this, except that none of you seem capable of reading any posts with any subtlety of understanding at all. Everything is painted with a broad brush, black or white, and it is this radicalism that condemns us all to permanent disability.
Better advocacy may be happening in Greenwich, or in California, but it sure isn't happening in my state.
If I feel a further need to discuss Dr. J., I will just write the Medical Board, as a "Lyme moderate" whose child has been hurt by him. The Board needs to know that a few chronic Lyme patients still have a healthy skepticism.
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I know this isn't going to make me very popular but I must say something here....
Lydie is very brave to stand up against the whole board's opinion here and I have a lot of respect for her because of that.
The value of a difference of opinion is priceless. You can quote me on that I just made that up.
When we become emotionally involved then we get motivated into action. This thread could plant the seeds to future action by people who never would have gotten involved without getting ticked off here in the first place.
Differences of opinions aren't bad when the two sides can be brought together. Lydie has courage and I for one would like someone like that on my side.
She has some decent ideas even if you don't agree with her stance on Dr. J.
Please don't hate me I just think we should welcome debate sometimes, and not make the person feel like their feelings and first hand knowledge aren't valid.
I'll go stand by the coats now.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
"Sophisticated advocacy".
May I have some examples of this?
Posts: 4258 | From over there | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Dear Lydie,
I remember your posts about your daughter with diabetes, and being mistreated in the hospital. I admire your fight and your precision in documenting everything. Documenting has stood me in good stead as well, more than once.
I also appreciate that your appointments with Dr. J were not to your liking. My experience differs -- in fact, he won over my son at a time when very few adults could reach him. I never felt that confidentiality was breached in my presence (I don't know any other patients, but their names and pictures adorn his walls with their permission), and I would not hesitate for him to use my son's case as an example to help others. But that's just me.
At the last CT hearing, BTW, an IDSA doc who testified publically outed and discussed the case of one of the children who testified. He breached confidentiality, not in his office, but at a public hearing. I don't recall any medical board sanctions over that.
Doctors prescribe long-term antibiotics every day for acne. (My pharmacist thought my son was taking minocycline for ZITS!) I don't see them being called before medical boards to explain themselves, nor does IDSA or the CDC single them out as encouraging resistant bacteria.
You have spoken about having a reasonable dialogue with the IDSA doctors. That has been going on for some time, and continues to go on. I don't know why you think it doesn't. But i think you will agree that some doctors (both IDSA and ILADS) may be motivated by more than altruism.
You spoke about raising funds. Fundraisers take place every year. Music concerts, Lyme Literati receptions, walk-a-thons. Not to mention advocacy work: information booths, seminars, support groups, letter writing campaigns, news articles, and public hearings. I have been involved in various Lyme advocacy projects for 5 years, as long as I have had the disease. Yes, more is needed.
However, in conjunction with that, I think it is high time that we make more public NOISE about this disease. There has been a little, but much more is needed.
Diabetes does not have the stigma of denial that Lyme does. AIDS had it, and being labelled as a "gay disease" kept it from receiving adequate funding for a long time. But NOISE -- sometimes, reasoned, sometimes civilly disobedient -- got the message out that AIDS is a "human" disease, and the funding followed.
We need to get the message out that Lyme is a serious, debilitating, sometimes fatal disease, and a ticking time bomb in this country. Our numbers are growing. They will not be able to ignore us all for much longer.
I am sorry to derail this thread, but I think that your points are important to discuss, especially for those who are new to the controversies.
Lydie, a few assumptions were made about you that are unfortunate; but if you look at your posts on this thread, you also made assumptions, lumping Lymenetters into a group with one mindset.
I would welcome discussing issues another time, another thread. For now, I have a son who needs his doctor. We prefer it be Dr. Jones.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Absolutely Lyddie, your concerns and points on advocacy strategies are valid and important.
It is your repeated criticizms of Doc J on all of the threads whose topics are in SUPPORT of him in this current battle that are so very hurtful and disheartening.
There is plenty to refute your personal judgement, but we should not be discussing that here.
..meantime I will stand against the harm you pose in these threads by repeatedly (over and over and over) imposing your negative opinion of this doctor who has helped thousands of children.
I am truly disgusted, and that is not nasty, angry, or any of the other things you want to call it.
What you are doing is wrong and what you are doing is potentially harmful .. as this fight is real, it is now, and it is critical to hundreds of chronically ill children.
Noone, including me, is saying you have no right to an opinion.
..and you have certainly made your single opinion known many times over! Why so many times??
Especially when right NOW -- these hundreds of OTHER children need the community to rally behind this wonderful man and Doctor despite your personal opinion. I maintain, you saw him twice and are making an awful lot of judgements because he took calls and ran bloodwork.. most of his patients see him for months minimum. ..and they happen to love and need him.
Perhaps...follow up your other ideas about how the Lyme community should be advocating and what we should be doing for Lyme in another thread?
This is not about your opinions and not wanting to hear them, this is about asking that you stop the harassment in this particular case.
Please have some reverence.
While I feel for your situation..there are a great many families and children who indeed have suffered as much or more than yours has although with different disease conditions.
I ask you in honor of the children with Lyme and other TBD's who need DOCTOR JONES and need the community to act now.
Thanks for your consideration.
Mo
[ 26. February 2006, 05:17 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Lydie --having been around Lyme long enough, I can attest to the fact that I have heard complaints about every single individual doctor on all sides of the issue, be they academic or LLMD. No one is perfect and if you talk to enough people you will find a complaint about anyone. Still and all, there is no question in my mind about which medical professionals are to blame for this epidemic and the pain it has caused. I wish you luck in your "dialog," but you may find that things said to you privately are different than things said to the press or in peer review, substantially and shockingly different. The dialog must continue, even so ...but it will do little to stop the bleeding in any short term. We have to be strategic in the long-term and the short-term. While you make important points, I would think long and hard if I were you --and examine my heart-- before contributing to this debacle by writing another letter of complaint.
Posts: 8 | From CT | Registered: Feb 2006
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quote:Originally posted by wortman: Still and all, there is no question in my mind about which medical professionals are to blame for this epidemic and the pain it has caused.................... While you make important points, I would think long and hard if I were you --and examine my heart-- before contributing to this debacle by writing another letter of complaint.
I agree!! I will send my contribution to Dr J's fund on March 1. I hope others will do the same!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
so what is she doing?!?!? Is it a threat? Meant to hurt "US" by trying to hurt Dr. J. by submitting a negative letter? All of a sudden she throws that up when she is p...ed off.?!?!
That is "messed up" as my 11 year old would put it.
We have NEVER been over charged by Dr. J. His fees have always been within range or less even of other LLMDS that I have seen for myself.
He has NEVER done a test on my children without first asking me if I wanted it. We always discuss everything.
The biggest thing she does not understand is that main stream medicine is in on the cover up of this disease....They are fighting for their lives to keep the truith from getting out that they are to BLAME!
But then again who am I? Just another lyme quack right? Hysterical as she puts it. Im sure Ill see this posted on the smear lymenet message board next.
pattiecake (who rarely gets this upset)
Posts: 687 | From PA | Registered: Oct 2004
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posted
Thanks for the excellent posts here on the salient points surrounding Dr. Jones' case and for the efforts to keep this thread on topic.
The problem of privacy deserves a separate thread. Who of us has not observed patients' privacy violated? In fact, the problem is so rampant, that many hospitals have signs in their elevators warning medical personnel to rein in their discussions in public spaces. Maybe we can think of some positive suggestions for improvement? Would someone like to start a thread that is devoted to sheding genuine light on the problem? (No names please as per rules of Lymenet.)
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Okay, done: please check out the thread, "My fantasy: the perfect LLMD office."
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Please remember, everyone, that it is now possible to use paypal to make your donation to Dr. Jones' legal defense fund. Info at http://www.DefendLymeDoctors.com
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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