posted
I think your letter is right on target with the issues and your ability to report as someone who was there at the hearing!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
love your letter ellenluba, I really like reading this letters cuz then I get to know more about my fellow lymenetters.....
Posts: 983 | From The sky | Registered: Feb 2005
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posted
Have to go out and do the December run around but I've got a letter percolating and will write it when I get back.
Posts: 984 | From San Diego | Registered: Nov 2006
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Two years ago my family's world came crashing down. My husband was a vigorous 45 year old who worked hard, ran in half-marathons and only saw his doctor for an occasional check-up. Suddenly we were caught up in the dark hole of Lyme.
It took over a year to receive a Lyme diagnosis because Lyme is overlooked, hard to diagnose and in California, as in many other places, not considered a problem.
The list of symptoms he has is devastating: fevers, chills, loss of muscle strength, loss of energy, stabbing pains, aching pains, joint pains, muscle pains, and pain, constant unremitting pain. The list goes on and it breaks my heart to bear witness to it.
This previously healthy man lives a life of absolute agony and the only reason he persists is because he has hope that one day his pain will end and he will be able to resume a normal life. The reason that he has hope is because he has a lyme literate medical doctor. A doctor who unfortunately see patients just like him every day.
Treating lyme disease isn't easy, the bacteria and other co-infections are wily and difficult to diagnose and treat. It is a fierce battle and should be the only one the doctors and their very sick patients should have to face.
But just when you thought things couldn't get any worse you find out that the system that is supposed to be supporting us is actually undermining us. They are attacking our doctors.
Taking away our only weapon in this terrifying battle. Is it not enough we have to fight the disease, must we also fight for our rights for treatment?
Dr. Jones could be enjoying a quiet retirement. He's not. Unlike the majority of his colleagues, he did not turn his back on the suffering of all the children and their families affected by lyme. He is a beacon of hope in the nightmare of lyme.
Please hear the cries of the people affected by this disease and do not strike down this wonderful man who has taken such a valiant stand against lyme disease.
______________________________
Broken up for easier reading.
[ 16. December 2007, 02:02 AM: Message edited by: Parisa ]
Posts: 984 | From San Diego | Registered: Nov 2006
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I am writing on behalf of my family's support for the best doctor we have ever known- Dr. Charles Ray Jones. After spending years going to more than 15 doctors I finally got dignosed with Lyme and Bartonella in 2002. I was amazed that it took so much time to make such a diagnosis - especially since I had an rash all over my body! After I was dianosed my first thought was what about my 2 young boys and husband. My husband then got properly diagnosed but it was a bit hard for my kids. Their pediatrican didn't recognize Lyme and told me they had every other infection in the book. I finally decided to take them to Dr. Jones in Connecticut - all the way from Bethlehem, PA.
Dr. Jones gave my children the most comprehensive physical I had ever seen a doc give me kids. He mediculously wrote down all their symptoms and took great care in understanding what was going on inside their bodies. My older son had been bit twice by a tick yet I never had seen one on my younger son even though he broke out in rashes. They had sleep issues, personality swings, aches, headaches, respiratory problems and gastro problems. He did a series of tests on them and both boys were CDC positive for Lyme. My older son also had Babesia and my younger son had Mycoplasma also. Dr. Jones took great care with them and was THE best doctor for their care. Today they are thriving in school. They excel in sports get good grades, both have learned to play the piano and my youngest son got put into the gifted program. I owe this to Dr. Jones. If I had stayed with our peditricians I don't think I would have ever know my sons had Lyme and their health would be very chronic by now.
My story doesn't end there. I have an adopted daughter from China. While on a trip to Cape Cod she also got bit and had a huge bullseye on her chest. While Dr. Jones didn't have any appointments available he did offer to do preliminary blood work and also squeeze my daughter in on my son's next appointment. She tested positive for Lyme and Bartonella and he treated her also. I am thankful that Dr. Jones was able to do the right testing on her and get her treatment as soon as possible. This man is a saint who works endlessly for kids and is a true doctor.
I have been to some of the hearings and I am appalled to see what is going on in terms of what Dr. Jones is being held accoutable for. The boy he helped is better now and is thriving. No other doctor was able to help that little boy. That boy was almost thrown out of school because his cough was so bad. Dr. Jones merely looked at his records and symptoms, knew he had tick bites, knew the mother had a history of it, looked at what meds he had been prescribed by other docs and truly looked at what helped keep the cough down. He prescribed Zithromax before he could get him in for an appointment. But he read the health records over and other docs had given the boy Zithromax. Zithromax keeps the cough down!!! Dr. Jones did nothing illegal, unethical or wrong for that matter. He used his clinical judgement to get this boy help right away!
This case comes down to a distraught husband who didn't do anything to help his child get better. He has brought charges up because he doesn't understand the complexity and nature of the son's illness. I am shocked the Connecticut State Medical Board is even pursuing this case. Dr. Jones should be applauded for his efforts to serve the pediatric population of Lyme sufferers.
Dr. Jones has helped thousands of young children and he continues to do so. He helped my 3 kids when no one else could or would. I hope and pray the medical board continues to allow Dr. Jones to be the pioneer pediatrician he is. There is a lot of sick kids in the USA now and Dr. Jones is helping so many of them. Lyme is an epidemic and Dr. Jones is one of only a handful of doctors truly recognizing that and helping so many. I am thankful for him and the work he does.
Sincerely,
Heidi Healy Bethlehem, PA
[ 16. December 2007, 09:03 AM: Message edited by: Hides1 ]
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
Great letter Heidi. I think it's very important that Dr. Jones's patients be heard from.
Posts: 984 | From San Diego | Registered: Nov 2006
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bettyg
Unregistered
posted
parisa and heidi,
both wonderful letters you wrote about hubby and heidi's 3 children all treated by dr. j! very effective.
friendly reminder to all who are in process of writing, please break up those long solid BLOCK text letters into shorter paragraphs.
many important points are getting lost due to length of 1 paragraph. thanks!
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THe other letters here are awesome. It's inconceivable to me that anyone with a heart could ignore this kind of request. Let's just hope the board members have a heart. Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry my party shoes have been on the front porch today... so I am late getting to the party. (Shoes got too wet to boogie down)
I just read three more letter that have been posted.
Sorry to say... I really didn't like any of them.
I LOVED THEM!!!
It is so nice to see that people "get it" and are doing what they can to help not only Dr. Jones but ALL of our LLMD's.
EllenLu...
I didn't know you could write so well! Really!!! Very touching and yet factual. I liked this point too...
"The decision by the panel also seemed to be setting a precedent dangerous for the treatment of all Lyme patients in the future. In sanctioning Dr. Jones for treating despite a negative Western Blot, the panel ignores the unreliability of the test and the accepted role of clinical judgment in treating Lyme disease."
It shows BIG time the effect this decission is having on ALL Lyme pateitns and doctors.
What happens in CT won't stay in CT!
We all need to get serious here and realize that even if we don't have Dr. Jones as our doctor.. it doesn't matter.
This ruling will add to the others and our doctors will all be threatened.
NEVER think this can't affect YOU or your doctor. We've already had a number of LLMD's stop treating because of rulings against other LLMD's.
So thanks Ellen Lu for making that important point.
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Parisa..
After reading your letter I wanted to walk away from the computer. It made me sick.
This should NOT be happening to ANYONE!!! My heart breaks each time I see and hear these stories. And you described it so well I actually had goose bumps thinking about it.
Good writing skills! Actually VERY good!!!
How do you all write so well? I am totally amazed by these letters. I've gotten emails about them from folks not posting. People are VERY impressed.
And I know this is a holdiday time for many.. and I double thank you for taking time to do this. I know time is tight.. so your effort is even more special.
You said.. "Dr. Jones could be enjoying a quiet retirement. He's not. Unlike the majority of his colleagues, he did not turn his back on the suffering of all the children and their families affected by lyme. He is a beacon of hope in the nightmare of lyme."
Oh how true. He could be sitting in Costa Rica sipping on a margurita right now... but instead he faces these IDIOTS and stand up to them.
We all need to support that. And your letter is perfect in that regard!
Thanks Parisa. Good to see another fine letter from a Lyme Net member.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Monica.. you are on a roll, aren't ya? Good for you!!!
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Hides!
Is that YOU? LONG LONG time no see!!! And it is so nice that you've posted this beautiful letter... and of course that you wrote it too!
There is one thing you pointed out really needs to be said... and you did it so well. We need to talk about the SUCCESSES!!! While others are breaking my heart with their letters.. and rightfully so... yours at least gave me a reassured feeling and LOTS of hope.
You said..
"Today they are thriving in school. They exccel in sports get good grades, both have learned to play the piano and my youngest son got put into the gifted program. I owe this to Dr. Jones. If I had stayed with our peditricians I don't think I would have ever know my sons had Lyme and their health would be very chronic by now."
Bless YOUR heart for getting them to Dr. Jones and for YOU going the distance. I LOVE it when a plan comes together. I LOVE it!
And like Parisa pointed out... uh duh.. what DID she point out? Sorry my mind is on zero setting right now from lack of sleep and over doing it a bit lately.
OK.. I went back and looked. Well DARN! I forgot again THAT QUICKLY!!!
Trust it to be... what ever Parisa said.. I agreed. Geeze my brain is fried!
But I think your letter and the time it took to write it is a special gift that Dr. Jones and all of us appreciate. I can tell there was a lot of thought put into it... and I personally thank you for helping him... and ultimately... me. With him being helped.. it will filtewr back to MY ability to get care.
So thank you kindly... GREAT skilled and thought provoking letter.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I sent the below to the Governor, the Medical Board, Jones Lawyer. The letter here emits my personal contact info, but the rest is as I sent it.
Mary
Dear Governor / Medical Board of Connecticut:
I am writing to request that you NOT inhibit the courageous and life saving efforts of Dr. Jones.
Dr. Jones has, in the past, treated my youngest child for lyme disease. I saw many doctors with who refused to do the necessary testing to find out why my daughter was waking up in the morning, at the age of 4 1/2 and telling me that her body was numb from the waist down. She would have to bang on her legs to get circulation going in them.
It was a year earlier that I suspected a lyme infection but could not get a doctor in Danbury Connecticut to agree with the diagnosis. Despite the incredibly unreliable state of lyme testing, she was given an Elisa at two weeks into the symptoms, and when it came back negative, a Western Blot was not called for. I understand this is standard procedure in a lot of places. But I have come to learn that this is very bad medicine since early testing might not find enough antibodies.
Even though my daughter had every symptom of lyme included stuff jaw, swollen joints, fever, burning feet, dizziness, etc.....she was diagnosed with an ear infection and given three weeks of antibiotics at a low dose.
That ridiculous treatment was only enough to send the infection underground. For months after the antibiotics were completed, my daughter asked me to carry her because the bottom of her feet burned, and she would point to her joints and tell me they hurt. Eventually, these things got a little better, all the while I held my breath.
You see, I was on I.V. rocephin at the time, and I knew after my own years of not being diagnosed and a baby I carried dying because of it, that the potential for lifelong misery was very high.
AS time passed, my husband and I observed our daughter and wrung our hands. And eventually, the neurological symptoms that remained long after her 3 week course of antibiotics ended came to the surface in the form of numbing her body.
I could not get a doctor to suspect lyme disease because I could not say I found a tick on her. INdeed, I had never found a tick on myself, though years of illness were finally improved with rocephin given by a lyme literate medical doctor.
You see, the restrictions for diagnosis put in place by the Infectious Disease Society of America, and the intimidating tactics of pulling the licences of practicing lyme literate doctors, have made it actually taboo to diagnose lyme, even in people crawling on the ground with obvious infections.
Finally, after our daughter was waking with a numb body, I could take no more and we went straight to Dr. Jones. Although he was unable to see her personally, he ordered all the blood work for lyme and co-infections. WE went to his office and his nurse drew blood and did all the testing.
Our daughter tested positive for lyme and one co infection. Antibiotics were begun, and within one week, our daughter suffered a very large herx reaction which subsided after two weeks, bringing her to a new level of wellness.
Dr. Jones did thorough checks on our daughter's joints and vision, neurological progress, and history every time we saw him, once a month. He documented her progress and treated her with the greatness kindness.
To find someone who finally understood the nature of a lyme infection and was willing to treat her was a treasure.
I shudder to think what would have happened in today's state of ignorance about lyme if not for Dr. Jones.
The idea that he is being raked over the coals for his willingness to help all the children rejected by the medical system and who have lyme disease is a national tragedy that will reverberate to posterity for a long time to come.
Though I had to move away from Connecticut in 2005 and now live in Switzerland, I have followed his case and given my support in every way possible. He is a National Treasure that should be protected, not limited and persecuted.
I hope that your decisions regarding Dr. Jones allows him to continue to rescue the many, many children being lost in our society.
Respectfully, Mary ............
.............
Posts: 1032 | From North Carolina | Registered: Aug 2003
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bettyg
Unregistered
posted
mary, marvelous!! very touching about your daughter!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Wreck..
Know why I am up right now.. at 4 AM?
PARTY ANIMAL!!!
Actually it because of stories just like this. OH MY NO! I'm sitting here shaking my head. How horribly sad that you went throught all that for the want of help. Bless your heart.
Your letter really hit me hard. It has to be very good to get in my heart like it has... and I am sorry you all had to go through this .. I am so sorry. I don't know what to say except I am up working as hard and fast as I can to STOP THIS MADNESS!
Thank you for taking what must have been a lot of time.. especially around the holidays... to write this in support of what appears to be yours and my favorite children's Lyme doctor....
THE man.... Dr. Charles R. Jones.
My hat goes off to him .. and to you and yours.
I do hope Dr. Jones gets a copy of this letter. Please try to be sure he does. I am sure his spirits need a bit of uplifting right now.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thanks guys. My three daughters just this fall tried to be off antibiotics. The older two failed and had to return within two weeks. The youngest was off for two months, the one I wrote about above, and just three days ago we began a "challenge" of antibiotics to see if she herxes. WE see our lyme doctor this coming week in the states. Yes, we fly to American for treatment.
Myself, I am in a pickle. Lyme completely relapsing, but I appear to have inflammed bowels that get better off antibiotics. But I can't be off antibiotics.
And the bowel inflammation is at the healm of cardiac and joint complications.
Please pray for me.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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If we get a negative one, I think we should fight it, since it is wrong to deprive children of needed medical care!
Question: are kids who've been treated by Dr Jones writing too? If any of you can get your kids to write a letter about their experience with Dr Jones, I think that would be very important to do.
Posts: 13116 | From San Francisco | Registered: May 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I sent mine. I'm nervous these letters will not get to where they are supposed to though. The email is for the webmaster, who usually only is supposed to get emails specific to the website. Do we know this is the right email address?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks you for your kind words! I hope MANY other parents come along and write letters. I emailed everything last night- wouldn't it be wonderful for the medical board and governor's office to open their email and have hundreds of letters Monday morning!!!!!
My kids have made so much progress because of Dr. Jones. They are still on treatment and have a ways to go because the diagnoses were first missed by original doctors. There immune systems are still weak but are getting better. But they do thrive and show their potential. I have had many talks with Dr. Jones and that is his goal- he wants children to become well in order to live out their lives and achieve their potential.
Lyme and the coinfections are a long battle. I myself truly know this not only with my hard battle with the Lyme but the never ending Babesia battle that still goes on.
I thank Dr. Jones for the bravery, courage, and brilliant knowledge he has to combat these diseases head on!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Cobweb
Unregistered
posted
In Activism another poster made the excellent point that Insurance Companies prescribe without ever seeing the patient-or even talking over the phone with them.
Can't tell you how many scripts have been nixed by my insurance company for a cheaper med. Even going so far as substituting meds I am allergic to. Guess they didn't even bother to review my medical history.
Fortunately my LLMD , and Endocrinologist have both gone to bat to insist the original script be honorred.
Still the point remains-in essence, insurance companies prescribe all the time without ever seeing or talking to the patient. Motivated by profit and not in the best interest of the patient.
Did this point come out in the trial? Insurance companies can dictate treatment plans without seeing patients, or even gathering medical histories.
posted
Here is my letter. I will send it later today after Betty checks it for spelling errors (thanking you in advance) and after it gets the go ahead.
Thanks Tin-Cup for all that you do!! Dear ,
I am writing to you on behalf of my family and the parents of children not only in this country but world wide, who have sought out the sole pediatrician on Earth, for his expertise in the treatment of Lyme and associated tick born co-infections. Take a moment and re-read the previous sentence. Sole Pediatrician on Earth!!?? Do you realize the far reaching consequences if this pediatrician is reprimanded in any way? Do you realize what will happen to the children of your friends, your nieces and nephews, and your own children or grandchildren if they are infected with Lyme and have no where to turn? Dr. Charles Ray Jones, a fine, honest doctor of character and integrity, a global expert in the treatment of Lyme Disease, is their only hope,
My family lives in the Lyme Endemic area of Ocean County, New Jersey. This is a community where everyone knows someone with Lyme. Lyme is not prejudiced in whom it infects. You are at risk if you walk across a soccer field, pick-up your son from football practice, walk to the beach, walk to the mailbox, walk your dog, admire a friends live Christmas tree, go to a barbeque, pick your ripened Jersey tomatoes or blueberries. Surely you get the point here: We are all at risk. Lyme does not discriminate.
Being that the North East is so Lyme endemic, you would assume that the medical community would be better informed about this disease. Nothing is further from the truth. Both my daughter and my husband have Lyme and other tick born co-infections. My daughter, a bright, intelligent, athletic, honor roll student has had the honor of being Dr. Charles Ray Jones patient for two years. Her ``mystery'' illness almost robbed her of her life. This once vibrant, popular young girl was the victim of ignorance. Ignorance of the leading Infectious Disease Pediatrician at Jersey Shore Medical Center. Ignorance of the attending pediatric physician at Robert Wood Johnson Hospital. Her weakened body now confined to her bed for months, all due to ignorance. Ignorance that has no boundaries. It is as wide spread as the disease.
Dr. Charles Ray Jones is the most thorough, meticulous, and knowledgeable doctor we have ever met. His initial two hour exam of all new patients' leaves no stone unturned. Infact, you may find this interesting: The last thing he wants to do is diagnose your child with Lyme. He knows better than anyone the devastating effects this disease has on children and their families. The financial burden alone can bring a family to its knees. Thankfully, after two years of successful ongoing treatment, we now have our precious child back, due to Dr. Jones
The charges against Dr. Charles Ray Jones should be dropped. He is just being used as a pawn by a father out for revenge. Don't let politics and greed rule your decisions. Don't let politics and greed take our children's lives. Their lives lie in your hands. Don't disappoint them.
Respectfully,
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Tincup, thanks for your kind comments. In general, I am a very private person and it isn't easy to let people into my world. However, the only way others will know what we are going through is if we find a way to express it. I will strip my soul naked if it will help us.
To all of you who still haven't written. Do it now! Know that you did your part and let Dr. Jones know that his sacrifice was worth it.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
In this season of gift-giving, I thank all of you for your unique letters in support of Dr. J., your presence at the hearings, your financial help and for remembering that, like the "Little Drummer-Boy," each of us has a special gift to offer to the Child(ren).
-------------------- "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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Cobweb
Unregistered
posted
If a disgruntled father had not cried foul-Dr. J's successful efforts to help these children would be a great source of gratitude for all involved.
I wonder why my insurance company, who has neither met me, talked to me, nor read my medical files can prescribe for me? They have done it several times-of course, they were motivated by what was in their best interest, not mine.
Yet -what was Dr. J's motive? Certainly putting himself at risk was not in his best interest. Could it be his concern , selflessness, and knowledge of lyme disease compelled him to do what was in the best interest of the children?
Dr. J did not initiate his involvement-he was called upon-and he responded according to the true conscience of a doctor dedicated to help a sick child whenever, wherever, and however he can.
posted
hi design, if i see areas where i feel it should be broken up to EMPHASIZE your words, i'll do that too ok! thanks for the liberty you've given me!! i look forward to reading your letter now!
quote:Originally posted by lymedesign:
Here is my letter. I will send it later today after Betty checks it for spelling errors (thanking you in advance) and after it gets the go ahead.
Thanks Tin-Cup for all that you do!!
Dear ,
I am writing to you on behalf of my family and the parents of children not only in this country but world wide, who have sought out the sole pediatrician on Earth, for his expertise in the treatment of Lyme and associated tick born co-infections.
Take a moment and re-read the previous sentence. Sole Pediatrician on Earth!!??
Do you realize the far reaching consequences if this pediatrician is reprimanded in any way? Do you realize what will happen to the children of your friends, your nieces and nephews, and your own children or grandchildren if they are infected with Lyme and have no where to turn?
Dr. Charles Ray Jones, a fine, honest doctor of character and integrity, a global expert in the treatment of Lyme Disease, is their only hope,
My family lives in the Lyme Endemic area of Ocean County, New Jersey. This is a community where everyone knows someone with Lyme.
Lyme is not prejudiced in whom it infects. You are at risk if you walk across a soccer field, pick-up your son from football practice, walk to the beach, walk to the mailbox, walk your dog, admire a friends live Christmas tree, go to a barbeque, pick your ripened Jersey tomatoes or blueberries.
Surely you get the point here: We are all at risk. Lyme does not discriminate.
Being that the Northeast is so Lyme endemic, you would assume that the medical community would be better informed about this disease. Nothing is further from the truth.
Both my daughter and my husband have Lyme and other tick born co-infections.
My daughter, a bright, intelligent, athletic, honor roll student has had the honor of being Dr. Charles Ray Jones patient for two years.
Her ``mystery'' illness almost robbed her of her life. This once vibrant, popular young girl was the victim of ignorance.
Ignorance of the leading Infectious Disease Pediatrician at Jersey Shore Medical Center.
Ignorance of the attending pediatric physician at Robert Wood Johnson Hospital.
Her weakened body now confined to her bed for months, all due to ignorance.
Ignorance that has no boundaries. It is as widespread as the disease.
Dr. Charles Ray Jones is the most thorough, meticulous, and knowledgeable doctor we have ever met. His initial two hour exam of all new patients' leaves no stone unturned.
Infact, you may find this interesting: The last thing he wants to do is diagnose your child with Lyme. He knows better than anyone the devastating effects this disease has on children and their families.
The financial burden alone can bring a family to its knees. Thankfully, after two years of successful ongoing treatment, we now have our precious child back, due to Dr. Jones!
The charges against Dr. Charles Ray Jones should be dropped. He is just being used as a pawn by a father out for revenge.
Don't let politics and greed rule your decisions. Don't let politics and greed take our children's lives. Their lives lie in your hands. Don't disappoint them.
Respectfully,
design, OUTSTANDING letter that touched my heart over and over as I read and made shorter paragraphs for emphasis! Well done; your daughter/hubby can be so proud of you! WE ARE!
send your letter; it's as good as it gets!! ********************************************
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
People, don't forget if you would like a copy of your letter to be hand-delivered on Tuesday, December 18, also send a copy to Sheila at [email protected] with your permission to do so.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
letter for someone who doesn't have one, if it isn't too - well - accusatory.
Dear Dr. O'Neill and members of the Medical Board:
The case against Dr. Jones would never survive in a court of law. He didn't do what he is accused of, i.e. diagnose and treat children with Lyme disease before having examined them.
What he did do is not worth the time and effort that has gone into prosecuting him.
A doctor who is loved by so many and has such an outstanding track record with his patients should be emulated, not punished. With more than 10,000 patients, Dr. Jones has more experience in treating Lyme and associated tick-borne diseases than any healthcare professional on the planet, including Drs. Wormser and Shapiro, who don't even believe in chronic Lyme.
Please do the right thing and exonerate Dr. Jones of all charges and allow him to practice unfettered what he does best. Thousands of children and their families are depending on you.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Tinny, to answer your earlier complaint about lack of participation here: I posted the link to all the state yahoo groups and told them about the letter writing party. However, without the link I myself tried to find the letter writing party I had heard about. I checked Activism and General before giving up. Then I followed the link and found it. Medical ??!!! And the heading doesn't exactly let you know what it is.
So I have posted under a different subject heading that actually mentions Dr. Jones Letter Writing on the other forums on LymeNet and gives the link. Maybe other LymeNetters will now be able to find it!
Don't forget to cc Sheila with your letters and she will hand deliver copies at the hearing.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I was glad to see someone refer to Dr. J as a "saint." Saints are not required to be perfect or even popular. But they do the right thing in difficult circumstances. I think Dr. J is definitely a candidate for sainthood.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Just back from 8 days of hard travel...will send out these letters for Dr. J to all in the next 12 hours despite jetlag...
Thanks Phyllis, I will probably use part of your letter to the medical board, it is accusatory but it is true!
Posts: 2557 | From home | Registered: Aug 2006
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
another letter for someone who doesn't have one:
Dear x
The CT Medical Board's mission is to protect the public from predatory and immoral doctors who use their office to prey on vulnerable people.
How does Dr. Jones fit this profile?
Dr. Jones definitely serves vulnerable people - children with Lyme and other tick-borne diseases - who often have seen many other doctors in their attempt to figure out what is wrong and what to do about it.
He works 6 or 7 days a week to serve desperate children and their families from all over the world. He works out of a tiny office and lives in a tiny apartment nearby and sometimes charges no fee in cases of financial hardship. He follows the standard of care of the International Lyme and Associated Diseases Society, whose guidelines are peer-reviewed and published on the National Guidelines Clearinghouse.
What is not to like about this doctor?
He treats Lyme disease, which is a political hot potato. Even though a majority of his patients are cured or improved, in contrast with the high failure rate of treatment according to the competing guidelines (Infectious Disease Society of America), success is no protection against prosecution.
Dr. Jones has been punished too much already by virtue of his extended trial. Please let him return to his practice without punitive restrictions.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
Thanks, Phyllis! I sent my letters thanks to your sample!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Mine is done. Also, I did find a personal email address for Dr Dennis O'Neill by doing a little online research (hey, these people hold a public office!) so if anyone wants to email him directly it is: [email protected]. My subject line was IN SUPPORT OF DR CHARLES RAY JONES.
Posts: 3528 | From US | Registered: Apr 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thank you TinCup and Betty and Phyllis and Lymeblue and everyone else who is working so hard to make sure the CT Medical Board et al understand how much we support Dr. Jones.
History demonstrates that is easier to do foul deeds and get it away with it when the perps think no one is watching.
Everyone who has written in support of Dr. Jones is shining a great big 'ole light on the huge injustice that this persecution of a fine doctor and humanitarian represents.
What a grand community this is when called to action.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
phyllis, good letter you wrote here too!
QUESTION: WHAT IS THE CUT UP TIME/DATE TO GET CC TO SHIELA BY EMAIL?? thanks PM
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thank you for these other addresses. I want to cover all bases.
Wish I could go.......please get word to lymenet as soon as someone can comment/get to a computer tomorrow.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Dear Board Member,
I lived on the West Coast when I first heard of Dr. Jones and the good work he was doing.
The fact that he has been going through litagation is so wrong. The cost of going through this is so wrong and could be used in a much more better way towards the lyme cause.
I was amazed when I was finally diagnosed after seeing 35 specialists in an 18 month period that there were only 3 lyme specialists in the state of CA.
While at my lyme specialist office I met a family who had moved from the east coast to the west coast.
They had been seeing Dr. Jones. One boy talked about how he saw another boy come into Dr. Jones office pushed in a wheel chair and who was also deaf and blind.
This boy had gone years without the medical community knowing what to do to help him or what the cause was.
After being treated by Dr. Jones, this boy went on to be his class validictorain and was now in college.
I feel you have the wrong person in front of you. What about all the doctor's we have gone to for help who just shook our hands and wished us a nice life as our health continued to get worse.
I am hoping and praying that someething positive will come out of this for Dr. Jones and the lyme community.
I know it did for that little boy in the office I saw that day. He had gone from being bedridden to being a regular full of energy little guy. It made my day to see him and his family.
I wish you could have been there. I wish you could have experienced how debilitating this disease is and recovered from it. It seems to be the only way people understand.
We need to attack lyme disease, not Dr. Jones.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Woooooooooooooooo hooooooooooooooooooo!!
Look at the party animals NOW!
HOLY NIGHT!
And thank you all!!!
First comment..
The email address for the webmastrer has been cleared in advance. They are expecting the letters at that addres and are prepared to pass them to the right person. Sending them to other addresses may not work as some are not involved in the case anymore.. and some won't share them with the rest of the board.. so please do send them to the addreses I posted.
And.. if you want your letters hand delivered to the Governor as a "press statement"... although he IS getting them anyway via email... please do send to the additional email address. NOT to panic if you didn't... ok?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
After reading the additional letters posted I've decided if I were on that Board I'd send Dr. Jones home from this upcoming hearing with all charges dropped... re-payment for the $$$$ he has had to pay out for the defense... a bucket of cash to help pay fopr the childrens health care needs... and a certificate declaring him a saint.
Anything less is a sin!!!
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Lyme wreck said.... "... I appear to have inflammed bowels that get better off antibiotics. But I can't be off antibiotics."
May I suggest looking into "leaky gut" and L-Glutamine. Hope it helps...
Aniek- I addressed this concern above. Thanks for asking.
"The email is for the webmaster, who usually only is supposed to get emails specific to the website. Do we know this is the right email address?"
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Hides said.. "I have had many talks with Dr. Jones and that is his goal- he wants children to become well in order to live out their lives and achieve their potential."
And for THAT he is being SYLMED. Shame on those people. And boy are THEY going to be in BIG trouble for doing it.
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Cob said.. "Can't tell you how many scripts have been nixed by my insurance company for a cheaper med. Even going so far as substituting meds I am allergic to. Guess they didn't even bother to review my medical history. Fortunately my LLMD , and Endocrinologist have both gone to bat to insist the original script be honorred."
Yes.. and that is why we need to bust butt on this case. Here in YOUR state some pharmacists are refusing to even FILL any prescriptions without a consult from an ID idiot!!!
So please do write a letter if you will so we can stop this injustice for all!!! This "case" isn't JUST about Dr. Jones and a 5 day prescription refill... or a dope of a father who wants to lessen his responsibility to his children.... it is about LYME.
Every week I hear from someone, somewhere, who has been denied meds, tests, treatment, etc.. because of these IDiots we are fighting.
Word is that insurance will be a BIG hurdle this upcoming year.. so hold onto your hats.
And with the other hand.. write a letter.
It will be vital to this cause... and others coming soon to a theater near us.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Funny thang.. I finally slept 8 whole hours last night.. a first for a LONG time... and rather than being the perky littl petunia I expected to be... I feel like a snails belly after a 3 mile hike down a gravel road.
But this too shall pass.
uggggggggggggggggg...
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Lymedesign said... "I am writing to you on behalf of my family and the parents of children not only in this country but world wide, who have sought out the sole pediatrician on Earth, for his expertise in the treatment of Lyme and associated tick born co-infections."
I am SO glad you pointed that out!!! Your letter brings attention to the fact that what happens in CT, doesn't STAY in CT. (A theme I am trying to promote too!) Good for you!
And I grin BIG to see you mention the IDiots by name. Some of MY least favorite for sure. SHAME on them!!! Shame shame!!!
AND.. you pointed out that the Lyme situation could affect THEIR lives too- the medical boards.. by relating it personallly to them.
You sure hit a lot of great points in such a short time. Excellent letter!!! Thank you!!!!
Keep up the good work. We NEED you on board!
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Parisa said... "In general, I am a very private person and it isn't easy to let people into my world. ... I will strip my soul naked if it will help us."
Yes.. it is difficult to share personal stories... I know. And it is a shame we have to even being doing this at all. But I "extra" appreciate your effort in this light... as I know it is not a comfortable thing to do. Thank you!
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Fight said... "In this season of gift-giving, I thank all of you for your unique letters in support of Dr. J., your presence at the hearings, your financial help and for remembering that, like the "Little Drummer-Boy," each of us has a special gift to offer to the Child(ren)."
What beautiful thoughts Fight... thanks for that reminder.
please make sure you include your full name as I am told that it needs to be on there.
Sheila is leaving for Hartford this evening so send them ASAP!
Who knows if the letters are going to be read on email-
Melissa
Posts: 3905 | From USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BettyG- Special note to you.
THANKS!!!! You are doing a grand job editing and keeping this project alive. A real party animal you are.
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Phyliss said..
People, don't forget if you would like a copy of your letter to be hand-delivered on Tuesday, December 18, also send a copy to Sheila at [email protected] with your permission to do so.
Thanks Phyliss. I wasn't able to get here in time to post that. As always .. you are 10 steps ahead of me.
Oh.. and thanks for the chewing out. I needed that. But on the next party invitation list.. your name WILL be marked as "to be considered".
HA!
Sorry it was hard to find. Glad you were able to do it and share it. Thanks! This post/party started on Thursday and was marked so... and I had to change it a couple times.
But I'll do better next time!
And another thanks for sharing more sample letters!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tutu and CD57 and valymemom...
WONDERFUL!!!!
Thanks for doing this for Dr. Jones and ALL of us!!!
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BettyG said..
QUESTION: WHAT IS THE CUT UP TIME/DATE TO GET CC TO SHIELA BY EMAIL??
I am working on that. Can't get my email to her box. FULL?? But have contacted others involved to see if they know.
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Kam said..
"I feel you have the wrong person in front of you. What about all the doctor's we have gone to for help who just shook our hands and wished us a nice life as our health continued to get worse."
EXCELLENT point and EXCELLENT letter!
That MAY be our next action in this war if they continue with this folly.
If I were the IDiots and all connected to this Dr. Jones cases and other nightmares.. I'd consider this..
Before you punch sick patients in the gut and stomp on their hands and hearts as they reach out for help... you better be sure they aren't going to bite back.
Kam said ... "We need to attack lyme disease, not Dr. Jones."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Merry asked...
Who knows if the letters are going to be read on email-
They will. All set up in advance.
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And I just got this reply about what the cut-off time will be for sending the letters to the additional email address...
"I got your email, TC. ... I'm heading to the copy center to make copies of the emails that I have so far. Hopefully, if more come in this evening, I can check my email at the hotel and pay them to make copies.
The short answer is: the sooner the better - but keep them coming until 8 tomorrow morning, and I'll do what I can.
Names and city/state needs to be on it, I believe, for letters to be credible in this situation."
OK? So if you want them to be in the package going to the Governor... as a press statement... please send.
I am always so impressed with this behind the scenes action and work. These folks are great! Dedicated people.
Didn't take time to read all of the letters y'all wrote. Hope my letters are not too late. Sent to Gov, CT Med BD, and Dr J's attorney.
My letter:
Dr. Charles Ray Jones was an answer to our prayers!! No Pediatrician could be more compassionate, loving, and knowledgeable about Lyme disease. He certainly lives the Hipporcratic Oath to "first, do no harm."
My grandson had Lyme disease several years before getting a correct diagnosis. After short term treatment, he relapsed. We had no one in South Carolina with the experience and expertise to treat him adequately, so we were desperate to find a Lyme Pediatrician.
We were truly blessed to learn of Dr. Jones, who diagnosed Lyme Encephalitis and started treatment. Every day I give thanks for this wonderful physician who is giving back my grandson's childhood and self esteem.
When I had breast cancer eight years ago, I was given several options for treatment. The surgeon and I made the best decision for my case. Every Lyme patient and physician should be able to discuss all options and make an informed decision together....a "therapeutic alliance." Lyme is an extremely complex disease that can not be successfully treated with one protocol for all.
Words are inadequate to express the importance of Dr. Jones being allowed to continue treating children based on each individual's case. Please do not restrict his ability to use his expertise to help the thousands of children that need his care.
Without proper treatment, children are being deprived of their childhood. If Dr Jones is forced into retirement, where will all these sick children go for successful treatment?
I implore you to do all you can to help Dr. Jones and all his young patients that he loves so dearly.
Most sincerely, name Columbia, South Carolina
Posts: 4638 | From South Carolina | Registered: Mar 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Whew! Sent my letters in support of Dr. Jones to the CT Medical Board, Gov. Rell, and Dr. Jones' lawyer. Hope they are timely and help.
I cannot believe the medical board would act so punitively after reading all the amazing letters on this thread!
Posts: 2557 | From home | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
cbb...
EXCELLENT!!! Nice to see SC represented! I just sent a letter basically saying ...
"What happens in CT doesn't stay in CT."
Your letter is proof of that! THANKS! I think of your "little one" (grand little one- who is probably MUCH bigger now) often and hope he is doing MUCH better.
You said.. "The surgeon and I made the best decision for my case. Every Lyme patient and physician should be able to discuss all options and make an informed decision together.... a "therapeutic alliance."
Good point!!! If adults can do this and everyone can with other health problems.. it should NOT be restricted for Dr. Jones, our LLMD's and/or Lyme disease.
It is sooooooooooo insane watching what is going on. I can't believe they get away with it!!!
Thanks for sharing your heart felt letter. I only wish they could actually see and experience what is going on in our lives and those of these precious children.
But YOUR letter helps bring that picture right to their front door.
Now party on dude.
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Yo HO HO HO up their in Vermont! The winter wonderland I hear?
Thanks for getting the letters done and sent. BIG job.. especially this time of year. But... each one helps.
And think.. just in the past few minutes we've had one from South Carolina, one from Maryland and one from Vermont.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I haven't counted the letters yet.. but this is a GRAND turn out. This wasn't an easy thing to do for many... so to those who took time and did it.
ALL of your letters touched me so much!! outstanding the way you opened your hearts to all the pain that we/others have.
to those who have posted on OTHER LYME BOARDS, please show the latest from SHIELA ACCEPTING EMAILS UNTIL TUES., 12-18, 8 AM EASTERN TIME FOR DR. JONES HEARING
teamwork at its best here; keep it going everyone!
***********************
TO BE COPIED TO OTHER LYME BOARDS OF 8 AM EASTERN TIME, 12-18, DEADLINE TIME/DATE!!! thanks all!
"I got your email, TC. ... I'm heading to the copy center to make copies of the emails that I have so far. Hopefully, if more come in this evening, I can check my email at the hotel and pay them to make copies.
The short answer is: the sooner the better - but keep them coming until 8 tomorrow morning, and I'll do what I can.
Names and city/state needs to be on it, I believe, for letters to be credible in this situation." OK?
So if you want them to be in the package going to the Governor... as a press statement... please send.
People, don't forget if you would like a copy of your letter to be hand-delivered on Tuesday, December 18, also send a copy to Sheila at [email protected] with your permission to do so.
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posted
Tincup, Thanks for the kind words and asking about my precious grandson. He's had LD since he was 8 yrs old and he's almost 16 now. Steady improvement with Dr. J's care.
I was very concerned that my letter may have been too late. Sounds as if I got in under the wire. Hope so!!!
Didn't have a chance to write it last week. Had a "surprise water feature" in the bathroom and into the bedroom.
Thankfully, it was clean water, but there was still a lot to do.
Sometimes it takes a while to find anything positive about an event, but I came up with two. The Pollyanna that I am - I just said it was better last week than during Christmas with all the family here. ....and I caught up on Fall and Spring cleaning from 2001 to the present for those two rooms.
Back to Dr J, I'll be anxiously waiting to hear what is decided.
The Lyme situation certainly has enriched my prayer life.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Thank you very much for hosting this important multi-day party for Dr. Jones so graciously.
I hope your hands haven't suffered too much as a result of the tremendous amount of writing you've done.
-------------------- "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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Cobweb
Unregistered
posted
Dear Ms.Cobweb (name has been changed to protect the guilty )
On behalf of Governor Rell and Connecticut Department of Public Health (DPH) Commissioner J. Robert Galvin, please allow me to respond to your e-mail to the Governor regarding Lyme disease.
As you are aware, there is a pending matter involving Charles Jones, M.D., before the Connecticut Medical Examining Board.
Your comments will be forwarded to the Assistant Attorney General who is advising the Board in this matter, for the Board's consideration as to whether your comments should be made a part of the record.
Respectfully yours,
Lynn Townshend Executive Aide to the Commissioner Connecticut Department of Public Health (860) 509-7158 [email protected]
_________________________________________________
at least one of my letters was acknowledged. Anybody else get feedback?
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Am I too late?
I'm completely brain-fried. I've been working on this for days & I can't see/think straight anymore. If it's not too late, can I get some help making this sensible so I can send it? I just can't read & try to reorganize my thoughts again.
I'm totally dilirious and apparently not doing as well as I thought. The harder I've try, the worse it's becoming.
Here's what I ended up with after attempting to implement Robin's suggestions (Thank you SO MUCH Robin!!!! I don't know if I got it right, but I'm sure it's better than the disastrous mess I started out here with! You're my hero! ) :
It has come to my attention that Dr. Charles Ray Jones has become the subject of persecution by a disgruntled person, who seems to be using the medical review board to exact some sort of revenge on his estranged spouse. I know that many people use their children as pawns to torment each other when going through divorce and I think this is despicable. I can not imagine a better way to hurt the mother of one's children than to launch a campaign against the only doctor caring enough to help her as she tried to alleviate the illness of her children.
If my understanding is correct, Dr. Jones is going to be penalized for extending a prescription for a child who had not yet been to his office. This is a child who already had this prescription issued by another physician. The child was not harmed by the prescription and was instead helped by the care provided by Dr. Jones. If this is indeed the case, I have trouble understanding why this man has been put through the expense and aggravation of this trial. There are many other physicians doing far worse things.
Dr. Jones is the only Pediatrician I am aware of that has dedicated himself to the to the diagnoses and treatment of tick-borne diseases. Through thoughtful research and experience, over many years, he has developed a thorough understanding of these disease-causing organisms. He has helped so many children who would have been abandoned by other practitioners and robbed not only of their childhoods, but of their ability to be productive members of our future society.
I am hopeful that it is the desire of the medical board to come to a decision that would be in the best interest of the people served by the professionals they are charged with overseeing. It takes a very special person to dedicate their practice as he has . It has been my personal observation that physicians with Dr. Jones' knowledge and dedication seem to be in great demand and very short supply, greatly outnumbered by doctors who would rather turn a deaf ear than become involved in the treatment of these diseases. I would hope that your decision will be one that indicates that medical review boards will not allow themselves to be used as pawns in a game of revenge, as this would surely become the wave of many future divorce cases.
When I was concerned about the possibility that my daughter might be infected with Lyme Disease, every avenue of support I found instantly referred me to Dr. Jones. He has an outstanding reputation for understanding the patterns of symptomology and helping to heal horribly sick children to spare them from the further ravages of these dreadful diseases. I have heard many stories from people who's children have been helped by Dr. Jones, people from all over the country who have traveled to see him for the benefit of his expertise. I am told that he is very compassionate and understanding and does not turn sick children away as so many other pediatricians seem willing to do.
I had known someone who suffered with Lyme Disease for many years, prior to contracting it myself. I have to admit that I thought that they had become an overly dramatic, chronic complainer. I have come to realize that, without my own personal experience, I couldn't possibly fathom the living hell he was experiencing. It can be so frightening for an adult with limited understanding. As a mother, I can't even imagine how awful it is for a child to have to endure.
I have come to the realization that my own situation and experiences are sadly rather common and warrant a need for more physicians like Dr. Jones not less available hours from one of so few available resources. My experience with pediatricians, with regard to tick-borne diseases, has left much to be desired.
I have been living in a nightmare since I pulled an engorged tick off of the arm of my daughter. I had fought with my daughter's pediatrician to have her tested for Lyme & co-infections after a tick-attachment. My daughter had bands on her Western Blot test which were specific to Borrelia Burgdorferi. I had previously been told, by her doctor, that her test was "negative". I only came to find this conflicting information when I requested copies of her test results. I tried discussing this with her pediatrician, but became incredibly frustrated when she faxed me a page from the Pediatric Redbook.
I began to search for another doctor, one who might actually be familiar with Lyme Disease in children. While searching for a doctor who might actually consider the possibility that my daughter may have been infected and still not have been fully CDC "reportably" positive, I repeatedly encountered the response "the doctor doesn't treat Lyme". My seven year old daughter had Borrelia burgdorferi specific positive bands on a Quest Diagnostics Laboratories Western Blot test and numerous symptoms. I was also unknowingly infected with Lyme and symptomatic during my pregnancy. On presenting this information to prospective pediatricians office staff, the two things I kept hearing were "the doctor doesn't treat Lyme" and "the doctor doesn't see patients younger than 8". My frustration mounted.
My two greatest fears right now, as a mother, would be finding out that my daughter has been infected with Lyme Disease and should have been treated sooner or finding that I had dragged my daughter through unnecessary doctors appointments and tests when her "symptoms" were actually "normal" childhood aches, pains, gastrointestinal issues, disappearing/reappearing earlobe nodules, temporary vision and hearing disturbances, sleep and emotional issues, and strange initial reactions to antibiotics. I would trust a physician of Dr. Jones' caliber to know the difference.
I have been doing my best to research as much as possible to obtain a more thorough understanding of these diseases, despite battling with my own late neurological Lyme & laboratory confirmed Babesiosis, in effort to make the right decisions with regard to my daughter's care. I am deeply disturbed by the apparent lack of effort on the part of medical professionals to do the same. I'm sure it would be much easier for them than it has been for me.
My husband was quite obstinate over not wanting to make a trek all the way to Connecticut "just to see a doctor". I eventually was able to find a pediatrician in NJ who was willing to evaluate her. This doctor is presently relying on a negative test from Medical Diagnostics Laboratories. I know that the testing can very often be inaccurate in later Lyme and can be falsely negative for numerous reasons. This concerns me as I have still been seeing symptoms in her, however I am now playing the watchful waiting game. I'm still not really sure what else I'm waiting for, perhaps severe arthritis or permanent brain damage?
As my husband was bit by a tick seven weeks ago. I have a feeling that he may soon have a different understanding of the need I feel to have our daughter evaluated by Dr. Jones. He had called to ask me what to do when he found the tick. I sent him to our PCP and told him to make sure that she ordered tests for co-infections, as she wasn't going to for my bite and make sure she prescribed Doxycycline, not the amoxicillin she had given me. Of five nearby neighbors I have spoken to, since I started treatment for Lyme, I have found that all five families have a member, diagnosed with Lyme and two with Babesiosis. I would say that's pretty endemic.
The PCP didn't think his bulls-eye looked the same as my "classic bulls-eye". I had a different opinion. I thought it was identical to the one I had gone to her with, except for that his was covered with hair. The doctor stated that his rash was just a topical infection and her recommendation was that he put some antibiotic ointment on it. She refused to give him any antibiotics. She also ordered the wrong test for Babesiosis & none for any of the other endemic co-infections. I verified this with my Vector-Borne Disease Specialist and requested that she write a new Rx for the proper tests, I even gave her the codes. The only co-infection she wrote was the Babesiosis IGG/IGM. I gave up my fight with her. Three days ago, my husband came down with "the flu". The frustration seems unending.
I encounter many people every day, who share frighteningly similar experiences, on a Lyme support website. If it were not for Lymenet, I would have accepted the Infectious Disease Specialist's diagnosis that I was free of Babesia and Lyme because I had received 2 weeks of Amoxicillin. He knew this because "that's what they're teaching at all the major universities". I shudder to think where I would be right now. Thanks to the care of an amazingly compassionate and knowledgeable Lyme-literate physician, I am finally feeling well again. This twenty months after the bites and 16 months after initiating proper treatment. I am actually feeling better than prior to my recent tick-bites. That missed opportunity for diagnosis of Lyme Disease, after tick-bite having been ignored due to lack of bulls-eye rash, is another lengthy story.
With the incredible number of people who could have written stories very similar to mine, I believe the need for more doctors like Dr. Charles goes without saying. Lyme-literate physicians are very difficult to come by and those that will diagnose & treat children, to offer them the same help that I have received are even more scarce. That is if there are any others besides Dr. Jones. Using all the resources I have available, I have not been able to find a comparable recommendation.
When I first heard that it was anticipated that Dr. Jones would be fined and someone would be assigned to review all his charts, I thought "well at least they might gain a little insight into the complexities of Lyme Disease." After having given it more thought, I realized that they would instead be punishing Lyme-infected patients all across the country by taking such action.
Many of the people fighting with disseminated or Late Lyme, due to neglect by those in the medical profession, would sooner go without eating than see a doctor punished for caring enough to diagnose and treat a Lyme-infected patient to the best of his ability. People will donate whatever the are able to his medical defense. It is really sad that it comes down to people who are very ill constantly having to fight, for as long as they are able, in support of physicians who try to help them and others like them.
It would be a great injustice to detract from the time available for Dr. Jones to see and treat patients, by subjecting him to chart review, as he is one of so few doctors who are willing to exhibit that kind of dedication. I fear that if his time is tied up by file review procedures, he will not be able to find time to squeeze in patients who really need his help. From what I understand of Dr. Jones, this wouldn't likely happen. It would be more likely that he would overtax himself and his own health would suffer. Where would that leave those who truly need him? They would be in an even more dreadful situation with nowhere to turn. I can't imagine not having him available as a resource.
This wouldn't be such an issue if more doctors would be willing to dedicate further study in the diagnoses and treatment of Lyme. They would also have to be willing to give up accepting insurance dictates for treatment of patients, as no two combinations of co-infections are alike in different individuals with different lengths of illness and different levels of pre-infection immune system strength. In combination, these diseases are not as easy to diagnose & treat as the textbooks and IDSA guidelines would state that they are individually. The insurance companies don't choose to grasp that concept and tend tie up doctors, who try to treat these diseases, in perpetual red tape making it impossible for them to practice.
With the perceived lack of compassion, empathy, dedication and "professionalism" in the medical profession these days, I would think that the medical community should be proud to have in their midst someone like Dr. Charles Ray Jones. It is my understanding that he is a good, kindhearted, caring, dedicated, knowledgeable and professional practitioner and I believe that many doctors could benefit from his example. Please do not persecute this man for honoring his oath. Thank you for your time and consideration.
Respectfully,
XXXXXX XXXXXXXXX Monroe Twp., Middlesex Cty., NJ
PS to Robin - It was so great that you PMd me instead of posting the suggestions here because I couldn't get on Lymenet all morning. I was able to read it through my e-mail!
[ 18. December 2007, 01:09 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I've taken a peak out on the rest of the board & see that I've got until 8:00am to get it hand delivered. I've got everything all set to go & will do any suggested editing prior to sending. I'm going to sleep now so I can get up early & get this out.
Thanks again for any suggestions!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Hi Ali -- West coaster still up...2 am here, 5 there -- just to let you know I'm p'ming you soon about your letter.
Posts: 13116 | From San Francisco | Registered: May 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks for saving my day, Robin!
I edited my previous message to reflect the changes. I hope I got it right. If not, Oh well , at least they could probably tell it was a letter from a distraught human being.
I'm thanking God for different time zones!
You ARE the greatest!!!!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
ali, hope you got your book "chapter" sent before the 8 am EST deadline today with the amount of work you put into your letter. very detailed; thanks for all your efforts!
posted
Glad to be of help! Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A partied out Tincup here. I couldn't be more tired had I been there in person!
But before I crash I want to take ONE minute to say thank you ALL for the effort you've made.
I've spoken to those who were at the scene today and tonight and have also gotten a number of emails about todays events.
I will post tomorrow ... once I've had more time to clear my brain, rest and take in all the details.
Plus I am still getting feed back and others who are writing up their notes and comments to send to me. I want to share what I can of the conclusions for those who so graciously helped out on this most important event.
Again.. to all who took time to help Dr. Jones and "his children".... and all of us and OUR LLMD's...
THANK YOU!
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AliG- BIG TIME GREAT!!!! More later.
Cbb- I was going to say something to you.. and forgot what it was that fast. Go figure! Too tired right now... sorry! Will try tomorrow night.. ok?
posted
to all, a big thank you for all everyone has done on this project, going to hearing, donating $$$$$ for his legal fund, etc.
when i read somewhere 125 letters were delivered and the head turkey had NOT READ ANY OF THEM but gave them to conn. attorney general's office instead!
was very frustrating they could NOT be bothered by each of our heartfelt stateements about the lyme kids, we lyme adults, and how thw whole system stinks to high heaven of HOG WASH!
will quit for now; calling an EARLY night for me.
MORE POLITICAL CAMPAIGNING again at noon when chris dodd comes to town! friday night is bill richardson.
missed actor/singer kevin bacon here with john edwards at school cafeteria.
bill and hillary clinton brought in magic johnson today to a HY VEE store closing; they took a group photo of all employees and them. they autographed 1 empployees shirt on back! a real collector's item since bill and magic's autographs sell for big bucks!
i'm going to ask chris dodd to emphasize also that he has sponsored the FIRST CHRONIC LYME BILL in congress and what it means for the 50 states of lyme patients. adios.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning..
MY impressions and opinions after reviewing the notes and hearing first hand from folks there.
1. The medical board was rude and ugly and ready to kill, however, the law prohibits them from doing that in CT. When speaking about Lyme, Dr. Jones or his attorney, the members acted like they had just eaten their lunch from a kitty litter pan.
2. The Dept of Health would have Dr. Jones and these children publically flogged if they had their way.
3. There was NO common sense used by those making decissions, much less science or good medically sound practices. All of that was ignored.
4. The medical board felt THEY had the right to diagnose and recommend treatment for children they have never examined (by saying that the children didn't have Lyme disease), but Dr. Jones doesn't have that right.
5. Some members of the board appeared bored, totally uninformed and as if they had no comprehension of the matter before them.
6. The board was IDSA all the way although they tried to make folks think they weren't.
7. The Dept of Health/Medical Board- the dopes that they are- led by Shaperio, et al no doubt.... wanted Dr. Jones to bleed. The "normal" punishment wasn't enough to satisfy them.
8. The mother of the children was beaten to death verbally and made to look like a crazy monster, etc. (reminds us of their Munchausers by Proxy tactic)
9. The Medical Board/Health Dept "facts" were so far off base (must have positive test, rash, etc) that they looked like they weren't the Kings of the Court.. but rather the snakes that slyme through the dirty basement at night.
10. If I were involved in any way against Dr. Jones and these children (member of Health Dept, Medical Board, IDSA) I'd be packing my bags to move to another remote country IMMEDIATELY.. one that has no extradition laws.
Boy oh boy are THEY gonna be in trouble for this circus performance. They did EXACTLY what was expected.. and were UGLY on top of it.
Say bye bye to the butt heads!! Their day in court is coming.
PS.. Again.. this is MY opinion from all of the input I've gotten from others and from direct contact with some of the proceedings which I attended.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Now for the NICE stuff since the uglies reports are done.
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The LETTERS!!!!
What I've learned is there were 150 letters put on the record. GOOD WORK!!!! This willbe invaluable for upcoming legal actions!!!! I would assume.. NOT for sure.. that any that were to filter in later would be added.
Not to worry they didn't read them. That only ADDS to the upcoming events and HELPS us. And it shows their disregard in handling the proceedings.. and their lack of willingness to see any other viewpoints.
And we managed to make some of the medical baord members whine and cry like sissy baby girls about it... and about you all being there.
Oh no no no... They don't think you should have done that... boo hoo hoo.
What a FREAKING display of disregard to HEALTH... you know.. that thing they are suppose to be guarding!!!
And no matter if they read them or not.. this hearing nightmare follows the same pattern as the others against our LLMD's.. they were bent on destruction and NOTHING would have swayed them from trying to nail the nails in the coffin.
Remember the "normal punishments" weren't enough and the Health dept tried to kick Dr. Jones in the head even harder by wanting more punishment and stating so on the record.
SOOOOOOOOOOOOOOOOOOOOOO... to all who took time to write.. your voices WILL be heard.. they WILL be read... and they will probably haunt the Dept of Health and Medical Board.. et al... for a LONG time to come.
Good work!!!
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The attendence was perfect too! I've heard counts of between 110 and about 200.. but it was hard to count as folks weren't all in the room at the same time.
This trip was a BIG deal and very difficult for many folks. I so much appreciate the effort.. as did Dr. Jones.
I heard he was beaming with smiles about you all being there and showing support.
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, at least they could probably tell it was a letter from a distraught human being. ![[lol]](graemlins/lol.gif)
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