sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
time for bed, but reading about Luna's destruction is one sorry way to leave this party.
i have been to all but 2 states in this great USA and have to many parts of the world, and of all those places, i felt the deepest awe and sense of timelessness while walking amongst those ancient trees.
i guess the lesson i take away from Butterfly's story is that ignorance and hate seemingly can sprout anywhere and everywhere- even where they are least warranted- and that the fight for justice is never really over.
Given how limited is our time and energy, we all have to choose our battles wisely. i believe with every cell in my body that fighting for Dr. Jones' right to treat Lyme based on his vast clinical experience is fully worth every bit of whatever sacrifice any of us have to make to help him.
Now party on...
nighty=night, dilly Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Anyone find this strange?
You know Shapiro testified against Dr. Jones.
But did you know that someone named, "Assistant Attorney General Daniel Shapiro" has been the Medical Boards counsel in the past year.. maybe longer?
They wouldn't hardly be THAT stupid to have THAT kind of a "conflict" of interest... would they?
tincup, you DO know why i no longer use caps beginning sentences, etc. !! but i'll send you a friendly reminder.
last year i typed 200 names/addresses on the TWO LYME PETITIONS FOR LDA AND LYNNE's !! most of them were non-stop, and my carpal tunnel set in. the next 2-4 days i could NOT type at all; could read only.
then with my sept. TWO falls damaging my right writ, we're back to square one again!
but you can kid me all you want to; it's easier on me. i've lowered my type A perfectionist personality to a B, " i can live with this" personality.
some wonderfull, tearful letters above. oops, there's page 2; i haven't read them all yet. off i go.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Did everyone go to sleep already?
Guess I'll put this up there for the morning folks.
posted
Hey Tin -- I'm up! You posted while I was composing this I-don't-know-what-you-call-it statement. I mean, I'm all choked up right now, and need to unwind after this!
Ok -- continuing this party into the early morning hours, after spending a day involving disability transportation access, explaining to the train folks just why I've had to lie down on the train for the past ten years...and yes, I brought them Lyme brochures...
Ok -- this letter -- it's riding on a feeling bigger than I can really express, but I'll try. I am in awe of Dr J!
To all parties concerned(and yes, I'll get the correct addresses!):
"Life, liberty and the pursuit of happiness": one of the most well-known phrases in the Declaration of Independence. Today, I prefer to think of it as Interdependence, since it takes all of us to support such an outcome for each other.
Through decades of medical ministry to thousands of children sick from Lyme disease and co-infections, Dr Charles Ray Jones has restored that famous national promise to thousands who wouldn't have it without his time-tested knowledge and tireless help.
Dr. Jones recognized the symptoms of Lyme disease in the children from Nevada. Lyme disease and co-infections do not always show up in tests and are often treated clinically. Dr Jones has developed the clinical knowledge to do so successfully. He was called precisely because other doctors do not know how to recognize and treat these diseases.
I should know. I am also an example of a Lyme patient unrecognized by medical professionals. I unknowingly acquired Lyme disease from a known tick bite at age 27, and spent 25 years going to at least 100 medical professionals, who did not recognize the many symptoms. Someone online across the country clued me in. It has been an enormous struggle for me as an adult and continues to be. My adult life is nothing like what I thought it was going to be.
But at least I had my childhood. I played freely outside, enjoyed being in nature, and reveled in the beautiful places of our country on our many trips.
Now I am hearing reports of backyard infections in the suburb where I grew up. I can't imagine it. I mean, we had yards, and we played in them. As well as everywhere else. I can't imagine what everyone is facing today, including our most innocent, our children, who play. That's what they do. They play outside. To face becoming ill from doing what children naturally do is incomprehensible to me. And it is happening. And what of those who contracted Lyme in utero? They are ill from the get-go.
The future is our kids. They become our adults. We need as healthy a nation as possible so we can have a functional country. Many of us are not functional the way we should be; we don't need to condemn more people to that fate. We don't need to condemn this country and the world's countries to this fate. Yet this is the future all are now facing, with a spreading world pandemic.
Your decision regarding Dr Jones is a big one: Will you diminish the future of our country and the world by restricting the practice of the greatest Lyme-treating pediatrician? Or will you take the larger view in this controversy and allow him to continue to restore children's lives, employing his vast knowledge of how to do so?
Do you understand that by supporting Dr Jones in his treatment of children with Lyme that you are also supporting the future happiness of these kids' families, their friends, their schools, etc? In other words, their communities? This is the interdependence that I spoke of earlier, and it is a living, vital reality.
A custody battle should not stand in the way of the precious lives of children who deserve the promise of life, and a country and world who deserve the promise of their children. Remember the famous words of the founders of our nation and do your part to make them come true in our time.
Please acquit Dr Jones. Thank you.
Posts: 13171 | From San Francisco | Registered: May 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Robin - WONDERFUL letter!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks, I think we all wrote great letters.
Tincup, you may use my letter and name anytime...anywhere. If one more person does not have to go through the mental and physical Hell I have been living...help them.
I am off to my daily IV trek but I'll check back later.
Posts: 422 | From CT | Registered: Oct 2007
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I am writing to voice concern about some of the conclusions made by the state physician review panel assigned to the case against Dr. Charles Jones.
I work as a biostatistician at xxxx University and I disagree with the panel's allegation that Dr. Jones erred when he ``diagnosed a disease when the ...medical history was nonspecific, the sign and symptoms were nonspecific, and the laboratory tests were negative.''
My primary concerns rest with the interpretation of the laboratory results and the weight given to the non-specific nature of the children's ailments.
The sensitivity of the Western Blot antibody test for Lyme disease is low (70 to 80%), which indicates a high percentage of false negatives, or missed positive tests.
Guidelines for the treatment and diagnosis of Lyme disease prepared by the CDC, IDSA and ILADS and publications presented in journals such as NEJM and JAMA that report on the sensitivity of the Western Blot antibody test for Lyme disease declare that Lyme disease is a clinical diagnosis, which can be supported by the presence of a positive test but cannot be ruled out by the presence of a negative test.
A negative Western blot antibody test should not be held against Dr. Jones.
Lyme disease is inherently difficult to diagnose; it manifests itself in numerous ways, many of which mimic other disorders, and the often non-specific history, signs and symptoms compound the difficulty in making a clinical diagnosis.
Therefore, it is crucial to have an experienced and careful diagnostician determine whether a patient is likely to benefit from treatment for Lyme. One important factor is whether a patient responds favorably to antibiotics. These two children responded very well to Lyme treatment.
In closing, I do not believe there is sufficient evidence to support this particular allegation. Thank you in advance for taking my concerns into consideration.
Respectfully,
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
What wonderful letters of support.
And yes, TC you already mentioned my letter earlier. Thank you!
Something popped into my head too after reading about Dr. J. and finding out that he marched with MLK.
What about the possibility of the NAACP helping out or being made aware of what's going on?
Whatcha think?
Injustice is the same where ever it might be found.
Anyways, am enjoying this kind of party. If I wasn't on so many antibiotics like most of us I'd bring the booze! Ooh, and something chocolate. Yeah!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning party animals...
I didn't know after all these years that something you all said or did could cause me to cry. I thought I'd seen it all. I was wrong.
Bless your hearts. This is so overwhelming.
wow.
What a way to wake up.
Tears on one hand after reading these letters... and amazment on the other hand cause I had NO idea any of you were that smart.
HEY.. I had to say something funny to break this funky mood I slid face first into after reading more of your letters.
Let me get my act together here... still groggy and ruffled.. and return to THE party place.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin...
Your I-don't-know-what-to-call-it statement is FANTASTIC!
That is what I call it!
I can't imagine the emotions this drew out of you and the energy. So I thank you dearly for doing it. It is a work of art.. and very powerful.
When you started out saying.. ""Life, liberty and the pursuit of happiness": one of the most well-known phrases in the Declaration of Independence."...
Well little Robin... I KNEW that I was in for trouble! How can this not be a moving letter when we talk about our basic human rights.
By the way.. I have that saying on my bathromm wall on a board I placed there several years ago. It is a constant reminder of what life should be about. Thank you for reminding me and others this IS what we fight for.
I smile to see your letter. GOOD WORK!!!
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MomfromTexas..
Your heart is as big as the state you live in. I am very pleased to see you also sent one out. Thanks so much!
And how wonderful when I heard you say...
"Can't everyone in our families send one. My son wrote his by hand."
Wow. That is a wondeful idea. Having the children write something is perfect in my opinion. After all it is their lives.
Thanks for being on top of the situation and for adding such a good idea to the "party" today.
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Monica said... "Tincup, you may use my letter and name anytime...anywhere. If one more person does not have to go through the mental and physical Hell I have been living...help them."
That is the spirit!!!
And such a kind offer. But I not only need your letter.. I need YOU!
And it looks like you've stepped up to the plate once again. Thanks!!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo Ho party girl Allie...
By the way .. where is LymeBlue with the music?
Anyhow.. Alllie...
Your letter is unique in that it mixes the science, legal and personal aspects together in a short but stong fashion that will impress the most complex minds ... and yet is still understandable to the everyday person.
How do you do that?
Good work!!!
I think the science is an important part of this equation and I am happy to see you've addressed it. The more "avenues" we take to show the entire picture.. the better!
You said... "The sensitivity of the Western Blot antibody test for Lyme disease is low (70 to 80%), which indicates a high percentage of false negatives, or missed positive tests."
I hope that hits them right between the eyes... and I think it will.
By the way.. I like your style too! Good writing skills.
Thank you... your effort to make this party a success is wondeful.
quote:Originally posted by disturbedme: Isn't it true that most of us think back nostalgically on our childhood, wishing we could experience it again? Children with Lyme disease who are allowed to suffer won't want to think back on their childhood when they are adults.
Excellent letters, all!!
Tincup, thx for getting us all to do this project together!! I expect that Dr J will get to read what we have written for him...
I think disturbed's quote here says what I was trying to get my head around last night -- I couldn't fathom losing childhood. Still can't. And this will be the psychological impact of early-age illness, unless children can be properly treated.
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin...
Since the .. ha.
I forgot mid sentence what I was going to say. Too much party I tink!
OH. Since the attorney gets a copy of it all and I know they go over things very carefully.. I would bet on the fact he would see the letters.
I made a copy of mine and mailed one to him to be sure though. I want him to know we care.. and I care.
He might enjoy something like that in a Christmas card if anyone is inclined.
Ok dudes.. party on. I think I need to crash for a bit. I had a little water emergency today. All over three rooms upstairs and so bad it ran down the inside walls to the kitchen and living room and was pouring all over the down stairs floors. FUN.
Had I thought any quicker I'd have taken a quick bath in it before mopping it up and having to shut down the main water line to the house.
But all is well now... just wet!
Later gators.. and party on! Keep those letters coming.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo party animals..
Has anyone invited the members on other groups to join in our party? It IS for a good cause.. and they are welcome.
I am sure they wouldn't want to let down Dr. Jones.
I am really surprised more LymeNet folks aren't here. Sorry they are not feeling like helping out. Letters are needed from everywhere.. and this is the first and only time we've been able to reach the Board members.
posted
Hey Tin -- I just did this -- posted on CaliforniaLyme -- almost 600 state members -- about your invitation to letter-party here this weekend! And a few Californians have already posted their excellent letters on our state site.
So for anyone who wants to post this invitation on your state's Lyme group, this might be a way to get some people over here this weekend.
Now don't go changing your post title again! -- I had to correct it from Thursday/Friday party to weekend party -- guess that'll safely cover for both Saturday and Sunday, and then I'll just have to worry about Monday?...lol
Now I'm starting to feel sorry I can't be in Hartford next Tuesday! Maybe one day we'll be able to tele-clone ourselves to be in multiple places at once!
And thx for your kind words to me earlier -- basic human rights -- guess that's what I was trying to address.
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Great idea Robin...
Welcome to all!
I know it must be hard Robin, not being closer to some of the events.. but next year the LDA Conference will be in California! I hope to see you there!
And we REALLY need folks who can't attend this event to do the other things that are so very important.. like you are doing here.
There are so few steady volunteers.. and the ones that are working all the time get exhausted... so when something needs doing... we need EVERYONE to pitch in.
And it is so nice to see all the ones that do!
Now how can we rattle more cages and get folks to write a letter and party too?
posted
Ok. Here's my letter to the medical board. I won't send it for a little while, in case someone thinks I need to change it, so let me know ASAP.
ear Medical Board Members I am writing in support of Dr. Charles Ray Jones, who has returned thousands of suffering children to normal, happy lives.
I don't know how many children you have seen in the advanced stages of Lyme disease, but it is often a horrific, hearbreaking presentation.
I sat in the state board hearings of Dr. Jones' case and listened to the mother of the children in the case describe that her son used to spend most of his free hours at home crying from the pain of his illness.
Earlier, I had seen that same boy walk smiling into the hearing room , and go immediately to Dr. Jones to hug him. I saw him sit quietly, apparently painlessly, during the hearing. I heard the mother's testimony about the child's incredible progress during Dr. Jones' treatment.
The panel focused instead on the fact that Dr. Jones had renewed an antibiotic prescription for the child before seeing him. This was a renewal of a five day antibiotic prescription for a serious cough which had prevented the child from returning to school.
While I understand that the panel was convened to investigate this issue, this scene highlights the absurdity of investigating a physician like Dr Jones for so small an issue, for doing something that many, many doctors frequently do in order to help a patient.
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.
Dr. Jones does not deserve to be punished, nor do the children who will have their treatment limited if this brilliant physician is not permitted to continue freely using the clinical judgment developed through returning thousands of Lyme diseae patients to health. To sanction him seems simply immoral.
I hope that the entire state medical board has more latitude in making decisions and can look at the big picture in deciding whether or not to sanction Dr. Jones. I hope that you make the moral, rather than the bureaucratic, choice and remove the sanctions.
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Posts: 819 | From New York, NY | Registered: Oct 2001
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bettyg
Unregistered
posted
ellen, OUTSTANDING!! send as is;
make 2 minor changes ... add D for dear;
2nd to last paragraph sentence; disease; add S.
your letter was very meaningful; you attended the sessions and could report 1st hand what you saw and heard take place.
loved how you showed the young boy going to dr. jones and HUGGING HIM! excellent~~!
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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: 13171 | 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
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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: 1034 | 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: 1034 | 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: 13171 | 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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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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