Edit for the WEEKEND- Time is getting short. Please respond as soon as possible. THANKS!
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We are doing great.. let's keep it up!
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ORIGINAL POST-
Remember when we use to have LymeNet Parties to get together and do some fun projects and help folks?
Of course there were always some ding-a-lings hanging around making us all laugh.
Well... let's have a LymeNet Party TODAY and see how many letters we can do for Dr. Jones...
Post them below.. and don't forget the hot chocolate!
Hey Road Runner- got a joke for us?
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The letters for Dr. Jones don't have to be long or fancy.. just heart felt and POLITE!!! A few lines will do it!
Below are 2 sample letters and addresses.
You can email 2 of copies of your letter but one-to the Medical Board- needs to be snail mailed ASAP.
Thanks for taking time to help Dr. Jones and the children with Lyme disease.
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SAMPLE LETTERS:
1. LETTER to SUPPORT DR. JONES
Charles Ray Jones is a very compassionate man and Doctor who has chosen to devote all of his time, energy and expertise to helping very sick children regain their lives.
These are children who can't get help anywhere else, who have been affected by the plague of Lyme Disease, and whose lives, health, happiness and future have been restored to them by Dr. Jones.
He is a man who understands that it is a life's work to give what one is able for the betterment of others. He is a selfless individual - a person whose values and caring set a shining example for us all. He is a person to be commended, not chastised, for his good deeds.
I have great hope that the medical board will understand what is really going on here. It is vitally important for us all.
Lyme patient
2. Letter from support group- adjust as desired to fit your needs.
Medical Examining Board 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
Dear Board members:
We are an organization of Lyme disease patients and caregivers located in ___________. We are writing in support of Dr Charles Ray Jones and his enlightened and compassionate treatment of children with persistent Lyme and other tick borne diseases.
His license to practice should not be compromised by this egregious involvement in a bitter child custody case, which, at its root, has nothing to do with the child's illness.
Lyme disease is very prevalent in children in many parts of the country, and these kids suffer terribly with a wide variety of symptoms. Often, they are abandoned by the medical establishment after the cookbook approach fails to identify their disease.
Pioneers like Dr Charles Ray Jones have made a huge difference in the lives of many children, including a significant number of them from our area who make the long journey to Connecticut for treatment. Under his care, they get their lives back. One or two successful outcomes would be anecdotal; dozens from our area attest to the value of Dr Jones' skills.
We urge the Board to recognize the cutting-edge nature of Dr Jones' approach to Lyme disease and exonerate him from any wrongdoing. His compassion for the patient is what medicine should be about.
Becoming a pawn in a custody battle is a terrible insult to this man, and the Board should see through that and do the right thing.
Support Group or YOUR name
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ADDRESSES BELOW! NOW it is easier. It is all emails!
[ 17. December 2007, 11:41 AM: Message edited by: Tincup ]
Posted by Tincup (Member # 5829) on :
ADDRESSES:
Since the weekend is here and time is short... all three can be emailed... or sent by mail.. whichever you prefer.
[ 14. December 2007, 04:46 PM: Message edited by: Tincup ]
Posted by Tincup (Member # 5829) on :
Here is one-
Dr. Dennis G. O'Neill, Chairman, CT Medical Examining Board 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
Dear Dr. O'Neill and Board members:
I am writing to request that you consider the following information before you take any further action in the Medical Board case against Dr. Charles Ray Jones.
As a long time volunteer patient advocate, the question I have been asked the most has always been, ``Where can I find a doctor who knows anything about Lyme disease?''
Back in the ``old days'' I didn't have anyone who could handle the chronically ill and severely disabled children who were in need of a proper diagnosis and treatment. Had it been acceptable protocol I would have referred them to veterinarians because they were the only ones who had any knowledge about tick borne diseases at the time.
To my hearts dismay, after years of trying to find doctors who would take time to learn even the basics or ones who actually cared about people in general, I only had a list of physicians that patients should NOT go to, as these so-called professionals were uneducated and/or unwilling to even try to learn about Lyme or lift a finger to help.
Then along came Dr. Jones. He was truly a blessing to so many families. I know of no one in the medical field who has done more to assist children and their parents than this wonderful doctor.
I often tell people, ``If I had to crawl on my hands and knees to take my child to Dr. Jones in Connecticut, I would.'' I have seen him work long days, endless nights and even weekends to be able to help as many children as possible. I have never heard of him turning away a sick child, even if they couldn't pay.
I have personally sent thousands of sick children to him over the years and never once have I regretted it. The best part is these children got better under his care.
If Dr. Jones was not competent or was doing anything questionable that might harm children I would have heard about it from the parents and would have never referred anyone there again. I want you to know after all these years I have never had a complaint about Dr. Jones or his wonderful, hard working staff.
Not only is his warm compassion and dedication to ``his children'' unsurpassed, but also, his skill in treating the ones with tick borne diseases is extraordinary, actually genius. There has never been a doctor like Dr. Jones and there will never be another.
He has success where so many others have failed. I consider him to be what is right with the world.
Before you make any negative decisions in his case, please remember that it may temporarily pleasure some misguided people if you do, but it is ultimately your name on that decision and you who will be held responsible for perpetuating the suffering of countless children and their families.
Please end this nightmare and let Dr. Jones go back to doing what he does best, which is taking care of and loving these precious children.
Sincerely,
Posted by Tincup (Member # 5829) on :
And another-
Connecticut Medical Board c/o Dr. Dennis G. O'Neill, Chairman 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
December 10, 2007
Dear Dr. O'Neill,
In regards to the Medical Board vs. Dr. Charles Jones, may I inquire as to where we shall take our children for help if Dr. Jones ability to treat is hampered by your upcoming ruling?
Are you or the Board members prepared to take responsibility for our children and treat them? If not, who will be available and will have the skill necessary to handle their health care? Please advise.
Yours truly,
Posted by Tincup (Member # 5829) on :
Connecticut Medical Board c/o Dr. Dennis G. O'Neill, Chairman 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
December 12, 2007
Dear Dr. Dennis O'Neill and Board members,
The __________________________ Support Group is located in ___________. We are a group of volunteers who provide education and support to Lyme disease patients and assist them in obtaining appropriate medical care.
We have a long history of referring chronically ill children and their families to Dr. Charles Ray Jones for advanced treatment of Lyme and associated tick borne diseases.
We depend on Dr. Jones and his dedicated staff and appreciate their long time service to the residents of Connecticut, as well as to the Maryland patients he has graciously accepted and successfully assisted over the years.
We are sincerely concerned that a negative ruling in his case will be a severe hardship not only for him but for the children who require his expertise and specialized care. We urge you not to interfere with his ability to continue his life's work and hope you will allow him to proceed without restrictions.
Thank you for considering our request.
Sincerely,
Posted by Tincup (Member # 5829) on :
What? Party poopers?
Or is everyone asleep?
Well, I am headed to bed now and I hope when I wake up there will be a dozen more letters here.
Lyme Net members have not let us down in the past... and I can think of no better cause than Dr. Jones.
See you after the rooster gets knocked off the fence for waking me at sunrise.
Posted by bettyg (Member # 6147) on :
morning or good night tincup!
got your earlier email and emailed it to 50 on my lyme group lists! i stated if they had never written a letter before, this is the ONE TO DO NOW! and needed to be done TODAY, 12-13!
now i see all your homework posted above. i'll write mine in am; i'm ready for some good bettyg
up for DAY crowd@!
Posted by Tincup (Member # 5829) on :
Get some sleep BG... we can party hardy a bit later. ALL DAY LONG! Thanks for sending out email with instructions. Good job!!
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Hey where are the fruitcakes that post pretty pictures? We need some fun stuff here!
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Oh.. and did I mention I wrote to Brad Paisley the other night?
I feel like a teeny-bopper writing to a famous singer. But I got an answer and am waiting for another reply to see if his song.. "I want to check you for ticks"... and he himself could work with us and our situation.
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Ok.. party time!
Posted by disturbedme (Member # 12346) on :
I was just reading -- The charges were initiated by Dr. Jones estranged spouse? I had no idea. And what for sure was he charged with? Harming children or just not following the guidelines?
How could someone do such a thing? Augh If only she knew what she was doing.
Posted by CaliforniaLyme (Member # 7136) on :
Disturbed- no not Doc jones estranged spouse!!! The Dad of the two kids involved was in a nasty battle with the Mom!!!!!!!!!!!!! Not together anymore- and ugly!!!
Posted by disturbedme (Member # 12346) on :
quote:Originally posted by CaliforniaLyme: Disturbed- no not Doc jones estranged spouse!!! The Dad of the two kids involved was in a nasty battle with the Mom!!!!!!!!!!!!! Not together anymore- and ugly!!!
Ohhhh, I see.
That's just as terrible. Must not care about their kids as much as they think to try to get rid of the only doctor who listened and treated them. Posted by lou4656 (Member # 10300) on :
My Letter:
I live in the state of Maryland and was diagnosed a year ago with Lyme Disease. I am writing in support of Dr. Charles Ray Jones and his devotion to treating children with Lyme and other tick borne diseases. The state's physician review panel needs to seriously consider the consequences if Dr. Jones is reprimanded for his treatment of children with Lyme Disease.
Lyme disease is prevelant in children in Maryland, and there are very few doctors who specialize in the treatment of Lyme Disease, and even fewer doctors that treat children with Lyme Disease. Many children who have been diagnosed in Maryland with Lyme Disease travel to Connecticut for treatment under Dr. Jones, because they know that their best chance for recovery is under his care. Dr. Jones is arguably the only pediatric Lyme Disease specialist.
Long-term antibiotics is, sadly, a sometimes controversial topic, but I can tell you that my prescribed long-term antibiotic treatment has saved my life.
If Dr. Jones is reprimanded, other doctors that adhere to the long-term antibiotic treatment will also come under scrutiny. The health of those people unfortunate enough to have been bitten by an infected tick, especially those that do not get an early diagnosis, will be in jeopardy.
If you have children, imagine how you would feel if your child was diagnosed with Lyme Disease? Any child who goes outdoors is vulnerable. Wouldn't you want the most knowledgable physician to treat your child? Wouldn't you want a doctor who specializes in pediatric Lyme Disease to treat your child? You would be smart to take that child to Dr. Jones. However, that option may not available to you if Dr. Jones is reprimanded.
If a member of your family developed any type of illness . . . cancer, heart disease, diabetes, Lyme Disease, etc . . . you would want your loved one to see a physician that specializes in that illness. Reprimanding Dr. Jones for treating children with what he and many other doctors believe is the patient's best chance for recovery from Lyme Disease -- long-term antibiotics -- is sending a very bad message. Please do your research and see that Dr. Jones is not alone in his treatment approach.
In the name of all that is fair and just, I urge the Board to exonerate Dr. Jones from any wrongdoing. Please do the right thing.
[ 13. December 2007, 01:58 PM: Message edited by: lou4656 ]
Posted by Tincup (Member # 5829) on :
HEY!
Any letters yet?
I just got a note that folks are hoping to get 1,000 letters!
Anybody?
I'm up.. kind of... and will start with a little Jimmy Buffett here.
It's 5:00 somewhere.
And Alan Jackson too!
Posted by lou4656 (Member # 10300) on :
up
Posted by Tincup (Member # 5829) on :
Oh lou... so nice! It actually brought a tear to my eye. THANK YOU!!!
The party is ON!!! What song do we play next?
If you all could see the hard work folks are doing behind the scenes right now.. it would amaze you.
But all their efforts can't get us all moving forward with out YOUR help.
YOU all are the back bone of the movement to change this Lyme nightmare into a diagnosable and treatable tick borne disease.
Without YOUR input.... the behind the scenes all volunteers are just a bunch of stuffed shirts. HA! Don't tell them I said that.
Good work Lou346576847362847562
Posted by Tincup (Member # 5829) on :
Hey Disturbed and Sarah...
Did you all do letters too?
Posted by aklnwlf (Member # 5960) on :
Here's my 2 letters that I did today.
Dear Governor Rell,
Please see the letter below that I've sent to Dr. O'Neill of the CT Medical Board. This issue concerns me very much because of the fact that if could set up a precedence with horrible ramifications. I'm sure you don't want the state of Connecticut to be known as the state that started this.
Dr. O'Neill and Board Members,
Let's see if I understand the issue. Dr. Charles Ray Jones is being brought before your board for the disagreement of treatment by the parents of a very sick child. The disagreement stemming from a custody battle. I'm shocked to hear this is an issue for a medical board and not family court.
There are almost always differing opinions of what medical care to procure for a loved one. One example that comes to mind is of ageing parent. My own mother exhibits times of diminished mental capacity. If her doctor recommends that she needs more care than can be provided at home should the siblings take said doctor in front of the medical board?
Dr. Charles Ray Jones has been a lifeline to many, many sick children. Are you all ignoring that? And if so, why?
Personally Dr. O'Neill and Board Members I wouldn't want to be in your shoes in this particular hearing. If it's so obvious to me that this is typical mudslinging arising from a custody battle I'm sure many others will see it that way.
The implications of your decision will be like the shot heard around the world.
Sincerely,
My letter has a different angle but I hope a legitimate one. Definitely worth crawling out from under the rock for.
Posted by Tincup (Member # 5829) on :
Yeeeeeeeeeeeeee haaaaaaaaaaaaaa!
Good one little wolf!!!
I like this part too...
"The implications of your decision will be like the shot heard around the world."
GOOD for you!!! And thanks for taking time to do it. But you DO have a history of jumping in when needed and making good things happen.
Party on dudes!
Posted by FightFireWithWater (Member # 5781) on :
Hi there, Tincup. You know I rarely miss a Lymenet party!
Thing is, I'm trying to help someone decide whether she should come to the hearing. It could cost her big-time health-wise because of a particular situation she is in.
She wonders, particularly since Dr. J put his life on the line marching with Martin Luther King, Jr. years ago (and people *did* die doing just that), whether she should follow his example and try in a small way to advocate for the children of the world. She would like to help raise awareness of the Lyme treatment crisis and the outrageous treatment of Dr. J.
What do you think?
[ 17. December 2007, 06:03 PM: Message edited by: FightFireWithWater ]
Posted by bettyg (Member # 6147) on :
tincup,
before i forget it, one of our alert lyme members, MARYV, noticed a discrepancy on the STREET address shown in the above examples.
is it "10 or 410" .........
to my lyme list group, i resent saying to just show PO BOX NO. as that is where it is sent with street address shown first, then po box no.
now here is what i just put out in my mailbox for our carrier to pick up today!
remember, i'm a FARMER'S daughter, so i'm a very INFORMAL person vs. using dr. this or that!!! no disrespect intended; we just all put our pants on one leg at a time!
Dear Dennis and the medical board,
I have never met Dr. Charles Ray Jones, but I have heard over and over from the lyme kid's parents, that Dr. Jones is a very compassionate man and Doctor who has chosen to devote all of his time, energy and expertise to helping very sick children regain their lives.
In Iowa, we have NO full-time chronic lyme literate MD, LLMD, in our entire state although there are over 2-3,000 correctly diagnosed lyme patients! Iowa is NO. 15 in lyme cases out of 50 states!
So we must travel 5-10 hours to nearest llmds; a hardship when we can barely move, and takes 5-10 minutes to get out of vehicles for each stop.
I worked 3 years ago with a woman from the Iowa City area with a 7 year old son, who NO dr. would treat for his diagnosed lyme disease. She had to travel to Missouri to a kid's llmd.
This LLMD got her son on the right prescriptions and dosages. He brought her autistic/asperger/lyme child back, and she then met her son for the first time "HEALTHY" ! She has cried bucket of tears since then!
This is what Dr. Jones is doing for the lyme kids/parents! He is bringing back their health, and OPPORTUNITIES for the future to grow up normal and be able to set goals and reach them! Don't all lyme patients deserve this? We all do!!
These are children who can't get help anywhere else, who have been affected by the plague of Lyme Disease, and whose lives, health, happiness and future have been restored to them by Dr. Jones.
He is a man who understands that it is a life's work to give what one is able for the betterment of others.
He is a selfless individual - a person whose values and caring set a shining example for us all. He is a person to be commended, not chastised, for his good deeds.
We lyme patients/parents/kids have great hope that the medical board will understand what is really going on here. It is vitally important for us all. Thank you.
Hoping you make our Christmas' merrier and healthier by allowing Dr. Jones to continue treating our lyme childlren until he choses to retire on his own!
Betty G Ames, Iowa lyme patient of 38 years;
34 yrs. MISDIAGNOSED since age 21 by 40-50 drs/specialists! I was the one who researched and found the correct illness getting western blot igm/igg blood tests done for my family dr. of 28 years to diagnose me!
this was emailed to gov. and charles' lawyers...
ps -- it was made easier by the 2 examples shown that i could copy from and then tell my own IOWA story about lyme kids!
thanks tincup/others for making this EASY TO DO in 5-10 minutes~~
here's to DR. CHARLES RAY JONES FOR A "GOOD" OUTCOME! Posted by Robin123 (Member # 9197) on :
Hi -- don't have time to compose my letter just now - am off for the day -- but the comment by FightFire about Dr J marching with MLK years ago caught my attention.
I just read Dr J's bio in Pamela Weintraub's article last night. Here's a guy who was friends with MLK and marched with him. We should be marching for Dr J and the kids now, singing "We Shall Overcome" and with verses for Lyme...
Posted by Monica922 (Member # 13496) on :
My letter is personal.....
Governor Jodi Rell Office of the Governor State Capitol 210 Capitol Avenue Hartford, Connecticut 06106
I met you about a year ago at a neighborhood party in Brookfield, CT. My family and I live in your neighborhood. I spoke with you about how I was teaching online and we discussed graduate education for a while. I want you to understand as you read this letter that I am an educated person with a health research background from the National Institutes of Health. This will allow you to clearly understand the horror associated with what has happened to my quality of life. Last March 2007, I found a tick on my stomach. It was the size of a freckle. I did not pay any attention to the bite at that time.
Within several days I started with night sweats and blurry vision. This progressed through July 2007. I had many tests during that time for basic things such as thyroid issues and early menopause. The tests were all fine. By July 4th I had 104 fever and paralysis in my limbs. The primary care physician in Brookfield found that I was positive for Lyme and babesia so I was placed on doxycycline, mephron and zithromax. The results were also sent to a Danbury hospital infectious disease specialist. I was told after taking the medicine for two weeks to stop since my Western blot was negative even though I started to feel better. The specialist said I had post viral symptoms. Within two weeks I was hospitalized with facial paralysis and severe neck muscle issues. I was still told it was post viral.
Three hospitalizations, literally hundreds of blood tests, three spinal taps, EEG, EMG, MRI's etc etc...all came back negative. My disease progressed to a point where I had encephalitis, severe neuropathy all over my body, along with a host of painful debilitating symptoms. I even had to hire a person to place my two young children on the school bus. This has all happened because physicians are not familiar with Lyme symptoms.
My 8 year old daughter also tested positive for Lyme two weeks ago. I would have never had her tested if I did not know the symptoms. My daughter is one of the lucky children that will be treated early and hopefully recover fully. It will take much longer for me to recover and function back in society. I find it ironic that I was told not to take the antibiotics initially due to drug resistance and now since my infection is in my central nervous system I have to be on IV antibiotics to get better.
Note, Dr. Jones is one of a handful of Lyme Literate Physicians that can treat children. The possibility that anyone in their right mind could prevent him from helping children is unimaginable. Instead you should be providing money to prevent this disease from infecting more people along with having Dr. Jones train more physicians in how to help children.
Please remember where I live and how I was treated. Also remember it is the same place you live. I was bit outside in my garden within walking distance of your house. Anyone is susceptible to getting bit by a tick. A year ago I was teaching in front of hundreds of people and now I have to hire a person to place my kids on the bus. The daily pain I experience is enough to make anyone cry. Please understand that you represent us and that you also have the power to help us. Please feel free to contact me anytime for assistance or more information. Thank you for your time.
Tincup...aside from my wonderful spelling, what do you think ?
Posted by bettyg (Member # 6147) on :
monica, i'm NOT tincup, but OUTSTANDING; you hit to the heart of this whole issue.
1. ticks can bite you anywhere including your governor's neighborhood! loved how you used your entire personal story to get the points across.
2. SHE IS REPRESENTING YOU, HER CONSTITUENTS in this lyme crisis and dr. jones hearing.
i teared up reading your wonderful letter and i didn't notice any spelling errors!
MONICA, YOU ROCK! glad to have you on our side!! Posted by Monica922 (Member # 13496) on :
Thanks Posted by Tincup (Member # 5829) on :
More folks at the party!!!
I just read the above.. but have to run because someone cooked ME dinner and if I don't show up down stairs to eat NOW... it will NEVER happen again!!!
I want to comment on the above letters... and will.. but till then.. keep on partying!
Back shortly!!
Posted by FightFireWithWater (Member # 5781) on :
If you too have concluded that the CT Dept of Health has no case at all against Dr. J. and find it difficult to write a letter, feel free to borrow the following short and sweet comment to send:
Re: Dr. Charles Ray Jones
Where's the beef?
[ 13. December 2007, 09:32 PM: Message edited by: FightFireWithWater ]
Posted by nan (Member # 63) on :
December 8, 2007
Dear_____________,
I write to protest the charges brought by the Connecticut Medical Examining Board against Dr. Charles Ray Jones. So many of us, parents and grandparents, consider this man an extraordinary humanitarian who works tirelessly every day to treat children with tick borne diseases. In spite of the hostile and vindictive actions of some medical professionals who choose to deny these serious diseases, this man has worked miracles for our sick children, including my grandson.
It is inconceivable that a man who has done so much good can be put in such an impossible position. There are thousands of us who would do anything to help him, yet are unable to..
All Americans should have the right to consult doctors we trust and who have the excellent references that Dr. Jones has. Our doctors should have the right to practice medicine without fear of accusations that can destroy their careers and ruin their reputations.
Thousands of children have been treated by Dr. Jones successfully. Many of these same children had been denied treatment by other doctors. There is an injustice here which needs to be addressed but is being woefully ignored.
Sincerely,
Posted by Lymeblue (Member # 6897) on :
I'm not a PARTY POOPER....in fact i'm a PARTY MACHINE !!!!! Now I went with my beautiful and short letter to the post office. ALL the copies WERE set to ARRIVE TOMORROW by priority mail. To the Medical Board, To the Governor and Pollack BYE
BTW if you were to play SALSA and MERENGUE at your party more people might join us !!!!and have a cyber dance
Posted by disturbedme (Member # 12346) on :
quote:Originally posted by Tincup: Hey Disturbed and Sarah...
Did you all do letters too?
I haven't yet. I am worried and not sure exactly what to say. The lyme's got my brain.
I WILL write a letter, though, I promise. Will at least get one done by tomorrow, if not tonight.
Is it okay if it's short?
Posted by Tincup (Member # 5829) on :
Figures! Everyone comes to the party when I'm gone!
Fight said, after sucking down all the popsickles...
"She wonders, particularly since Dr. J put his life on the line marching with MJK, Jr. years ago (and people *did* die for doing just that) whether she should follow his example ... What do you think?"
I think sometimes the world has gone to McDonalds in a hand basket.
I think if we want things changed we need to do everything we can to make that happen. I think while trying to do good things that we shall NOT hurt anyone in the process.
Sooooooooooooooooo.. if someone would be hurt by traveling to Dr. Jones.. they shall not go... nor be expected to do so.
BUT.. they CAN do other things to help... like I always see Fight doing.. and others here.
Think about this...
Just because the endangered trees need protection and I want to help doesn't mean I must put my body knee deep in the dirt to be side-by-side there with them. As a matter of fact... I'd be pretty useless in that position... ya think?
Soooooooooooooooooooo I think....
We do what we can.. but we can't do it all. We carry others load when possible, as they will carry ours one day.
Does that help?
WOW! All those borrowed words of wisdom rolling off my fingertips now.
It must have been the baked beans I had at supper time.
Thanks for the editing tip! I corrected the other post to reflect the late change.
As for your letter. First I thought you were posting a letter someone else wrote. I noticed that the letter you posted actually used capital letters at the beginning of sentences... so I thought at first it wasn't yours.
I know.. I know. That wasn't nice was it. I guess I had one too many hot chocolates before coming back to the party! HA!
I know you know I am just goshing with ya.
As for the actual letter...
This is suppose to be a party! Your wonderful letter... well thought out and compassionate.. was enough to break my heart.
I didn't know you could write like that! You amaze me with all your many talents.. but most of all with your never ending will to help others and cheer them along.
Beautiful!!!! And thank you so much! Dr. Jones is gonna flip when he reads these letters.
You know he will.
`````````````````````````````````````````````` Robin 123456
Sorry you had to head out! Hope you make it back to do the letter before we all poop out from all the partying. C-ya soon!
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And what Christmas carols are we singing now. Someone took my caroling book!
Now that I think about it.. it was probably on purpose... ha!
Posted by FightFireWithWater (Member # 5781) on :
After describing Dr. Jones' heroic, blameless service I may end my letter by asking:
A reasonable person might expect that the CT Department of Health would respond to such a doctor by
a. penalizing him through the state Medical Board
b. seeking his advice on tick-borne illnesses
c. asking how their Department could be of service to him in his practice
d. sending him a bouquet and good wishes for his health on his birthday
e. proclaiming a Statewide(or beyond) day of appreciation in honor of Dr. Jones?
Posted by merrygirl (Member # 12041) on :
Here is mine-
I had a hard time for some reason. Brain problems-
Hope it is half decent.
Members of the Connecticut Medical Examining Board,
I am writing today to express my concern ad opinions regarding the Dr. Charles Ray Jones case.
Dr. Jones could have take the easy way out like many doctors do and choose not to specialize in the diagnosis and treatment of Lyme disease.
He could have retired long ago and not face the charges pending against him and deal with all of the politics surrounding Lyme disease.
Instead this courageous man chooses to continue providing great ad compassionate patient care to some of the sickest and smallest Lyme disease victims, our children.
It is a comfort to know that he is available if heave forbid my kids were to become ill with this devastating disease.
I strongly urge the members of the board and any other of the parties involved to think of who would you want to treat your children and grandchildren if they were to become sick with this devastating disease?
Wouldn't you want the absolute best doctor to diagnose and treat them?
If doctor Jones is restricted in anyway, how will this affect his ability to care for our children your children?
Parents travel from around the world to see doctor Jones. There is a reason.
He has saved thousands of children from this disease.
Dr. Jones should be honored and other doctors and medial professionals should learn from Dr. Jones.
He should not be punished in anyway for saving the lives of thousands of children.
Please set an example and show the world that the politics that surround Lyme disease will not interfere with good patient care and the lives of countless Lyme disease victims.
Thank you for your consideration,
Melissa
Lyme Patient, And Founder of South Shore Lyme Support Whitman, MA
Posted by disturbedme (Member # 12346) on :
Here's mine, though it's short.
Dr. Dennis G. O'Neill, Chairman, CT Medical Examining Board 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
Dear Dr. O'Neill and Board members:
Lyme disease is a multi-system and, in most cases, debilitating disease. I was sick for a year before getting treatment with unusual symptoms, some of which were so frightening it pains me to think of children having to go through the same thing. Being adult, we are able to think more rationally about what may be going on inside our body. Children, on the other hand, aren't able to think the same way. Sometimes, they aren't even able verbalize to what extent they are hurting but we are able to tell by looking in their eyes and their lack of bright smile.
Children are not supposed to hurt. Children are supposed to laugh and enjoy their childhood. 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. Dr. Charles Jones is a very caring doctor who understands this deeply and does all he can to heal children who come to him weak and afraid. He gives them that chance to make their childhood worth looking back on. Please don't take that away from them.
Sincerely,
Ashley --------------
Does it need to be sent first class or overnight so it will get there on time?
Should I send a copy to Dr. Jones' lawyer as well?
Thanks!
Posted by Tincup (Member # 5829) on :
Monica..
I read your letter.
Three times at least. Once out loud.
I do hope you rubber stamped a warning on the outside of the envelope that said...
"Opening this letter is sure to cause a medical emergency. It will break your heart."
Your letter makes me physically sick. It makes me angry. It makes me want to jump on the idiots heads all day and all night till they straighten themselves out and fly right.
Needless to say.. it was a great letter to be able to cause that kind of emotion. JUST what the doctor ordered. Right on tract.
Anyone ever tell you that you write VERY well?
I say that with a worried look on my face. I mean what I said, of course.. but you can imagine what I'm now thinking... can't you?
Well.. just in case you don't know.... we have had some interesting folks pass by our LymeNet doors over the years. That comment I made about writing well...
Imagine what I felt like when I said that to someone else.. and didn't know who they REALLY were.
Imagine saying something like that to Amy Tan when she was on board!
Yeah.. I have been known to stick my big foot in my big mouth.... at least once or twice in the past.
So don't be offended if you are really Margarert Mitchell or Danille Steele. I may SEE Monica on the board as a name.. but you could be laughing yourself simple right now if you were really Edgar Alan Poe or someone really famous for writing.
Good job. Be sure to keep that beautiful letter. It can be tweaked for future use in our fight to get folks help. And thank you for taking time to write it.
Posted by disturbedme (Member # 12346) on :
Monica - That is an AMAZING letter. Sure to turn some heads and make people stop and think. Thank you!!! Posted by Tincup (Member # 5829) on :
Fight said..
Where's the beef?
Good point!
Dr. Jones is being kicked by ducks cause he HELPED kids.
So I will add this..
"Where's the BRAINS?"
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YO Nan...
I am sorry I couldn't see your letter. Seems I saw your name first and was grinning so big my eyes were shut tight.
Nice to see you!!!! I've missed your smiling face!!
I'm afraid I am beginning to sound like a broken record here.. but you wrote a GREAT letter too! I am simply amazed at what I am seeing. Such good stuff!
This part... "So many of us, parents and grandparents, consider this man an extraordinary humanitarian who works tirelessly every day to treat children with tick borne diseases. In spite of the hostile and vindictive actions of some medical professionals who choose to deny these serious diseases, this man has worked miracles for our sick children, including my grandson."
POW! Right to the heart of Dr. Jones. So glad it came out on paper so well. He will be so touched to see your comments. For sure.
I know I am.
Now.. what kind of dip do you like with the fancy crackers we got for the party. Crab or cucumber?
And did I say thanks for writing? If not.. shame on me. And thank you!
Posted by Tincup (Member # 5829) on :
Hey Ms. Party Machine!
You've got ME laughing. HA! You are just so darn cute! I love it, azul.
And bless your heart for sending them special to get there quickly. But then I know you are sooooooooo dedicated to Dr. Jones and all of us I shouldn't expect less from you!
Good job!
Now Party Animal.. or was that the Party Mahine?
Wanna dance?
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Hey disturbed...
I am holding you to that.
And thank for doing it. If you need any help or editing.. put it up here and someone will gladly help. We do that often for each other.. as some days the brains are not on 100 percent.. and we all have those days.
And listen... not to worry at all about the letter length. Short and sweet is great!
And do NOT let these great letter writers intimidate you. I've come here many a day and seen the quality of these letters that folks here write and would think... NOPE! I can't do it. They will make mine look like a bologna sandwich next to their Prime rib.
But ya know what? Even if mine wasn't as fancy pants as some of theirs... it was from the heart and it got the job done.
So go for it!
Posted by FightFireWithWater (Member # 5781) on :
Thank you, Monica, from the depths of my heart! Can you contact the media with your story?
(I'm just starting to read the letters here- been busy elsewhere. Thanks to everyone for writing and sharing.)
Tincup thanks for your helpful feedback! (Actually, though, some of those trees *have* benefited from their two-legged friends' on-the-spot protective stance.)
[ 13. December 2007, 09:49 PM: Message edited by: FightFireWithWater ]
Posted by FightFireWithWater (Member # 5781) on :
Dear Chairperson O'Neil and Members of the Committee:
This letter is to respectfully ask that you strive to bring the same degree of courage, intelligence, dedication to children's health, and level of ethical reasoning to your decision on Dr. Jones' case as he has has brought life-long to his practice of medicine.
[ 13. December 2007, 10:57 PM: Message edited by: FightFireWithWater ]
Posted by sometimesdilly (Member # 9982) on :
well, since this is clearly a BYOL (bring your own letter) kind of party, here's mine:
Dr. Dennis G. O'Neill, Chairman, CT Medical Examining Board 410 Capitol Avenue, MS #13 PHO P. O. Box 340308 Hartford, CT 06134-0308
Dear Dr. O'Neill:
Imagine the devastation of being a parent watching your once bright,happy,outgoing young child inexplicably transform into another kind of child altogether- one in constant physical pain, who is withdrawn socially,and who is rapidly losing new-found intellectual abilities such as reading.
Exactly that was happening to my precious 5 year son before he began treatment with Dr. Charles Ray Jones. Three months into successful treatment, my son is being returned to himself and to us; his teachers at school have openly marvelled at the difference they see in our son.
There is nothing miraculous or alternative or offbeat about the treatment Dr. Jones provides; my son takes just plain old vanilla antibiotics, and they work for him just as they have worked for thousands of other children who have been treated by this skilled physician.
Dr. O'Neill, I urge you to do what is right and best, and that is exonerating Dr. Jones of all charges, and allowing him to continue saving lives- including my son's.
Respectfully yours,
Posted by Lymeblue (Member # 6897) on :
Wont post more videos unless you feel curious about my crazy selection'and request them!!!
And please feel free to let me know if you guys feel is not appropriate...I'll delete them ASAP!!!
Posted by FightFireWithWater (Member # 5781) on :
Thanks for the party music, Blue. I'll listen after I finish my writing since I'm not a multi-tasker.
I really appreciate the excellent letters posted here and marvel at the writers' ability to maintain a tactful tone as we were instructed.
I'm going to think a bit more about how to get my message across and at the same time be reasonably sure I'm not being offensive. I welcome suggestions.
Posted by FightFireWithWater (Member # 5781) on :
As Dilly so aptly put it, this is a BYOL (Bring Your Own Letter") party.
Tincup is hoping for a thousand letters.
Please respond to the invite!
Posted by Tincup (Member # 5829) on :
Party music... NICE going Blue.
I'm dancing the night away. THANKS!! You crazy woman you!
I just now saw Merrygirl's and Disturbed's letters. I missed them earlier while typing and doing a press release.
Merry...
Your letter.. if that is when the brain isn't fully going.. well WOW! It sure doesn't look like you were one color short of a rainbow to me.
And yours took a different angle.. which was very good. Thank you for taking time for the bestest doctor in the world. He will be proud of your effort and this wonderful letter.
You said.. "Please set an example and show the world that the politics that surround Lyme disease will not interfere with good patient care and the lives of countless Lyme disease victims."
Excellent!!! You got personal in parts of the letter... and stayed professional too.
I smile.
Great job!!!
Let's dance! But watch out for Blue... she is a dancing fool tonight!
I think your letter is ... as I laugh... REALLY good.
I have to laugh. I keep waiting for a dud to show up. But they are all so well done!!!
You said... "I was sick for a year before getting treatment with unusual symptoms, some of which were so frightening it pains me to think of children having to go through the same thing."
My gosh ain't that the truth!!!
I am so sorry you were so sick for so long. And to be able to express your hard times so pretty (not the word I am looking for but I am getting tired)... well it amazes me.
I am so happy to think you took time to do this. I hope you know just how important it is. And I'd LOVE to be there when Dr. Jones sees your letter. It will warm his heart and make him smile... no doubt.
A BIG thanks for your so sweet and heartfelt letter.
Now.. let's party!!!
Oh.. about the mail.. let me check on something.
Back soon I think? Don't stop partying though...
As if I could stop you!!!
Posted by Tincup (Member # 5829) on :
HA! I'm trying to read and post and I keep getting lost and I ain't even left my chair!
Fire said.. "Actually, though, some of those trees *have* benefited from their two-legged friends' on-the-spot protective stance."
Her name is Butterfly. She is one of my hero's. She and others who take a stand for what they believe in are what is right with the world.
Mine, too. You know she wrote a book on advocacy. Was it called "The Power of One" or something like that?
Posted by Tincup (Member # 5829) on :
LITTLE WOLF!
I responded to you about your wonderful letter by email.. but just noted that I don't think I did here... and I didn't want anyone to think I was ignoring you!!!
GREAT letter.. for sure. I am still smiling.
Posted by Tincup (Member # 5829) on :
Party Freaks..
I see Dill Picle has an excellent letter too! And it makes me soooooo sad to have to see her story and the complete disregard for human health that the HEALTH Department has in CT.
Big ugly toads!!
And yes.. I called the local sherrif again today... and once again he told me it is still illegal to shoot people.
So like Dilly, we all need to write and let our voices be heard.
Thanks Dilly for taking time from this busy time of year to write. Your letter breaks my heart... so it is VERY good.
I just wish we had.. ahhhhh ... never mind.. my "nasty" is coming out!
I just remembered one of my signs at the NY Protest last November. It said..
"Health Department help people with Lyme? WHEN PIGS FLY!!!"
Posted by Tincup (Member # 5829) on :
Fight... I didn't get to read her book. Glad to know YOU know about her though.
We need more folks like her.. for sure.
Posted by Tincup (Member # 5829) on :
What do you think? Can we get more letters?
I think we can.
I am going to extend this party over for Friday.
Yes.. they call me the party animal.
Posted by sometimesdilly (Member # 9982) on :
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 Posted by Tincup (Member # 5829) on :
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?
Posted by bettyg (Member # 6147) on :
nan, melissa, and ashley,
great letters each of yours!
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. Posted by Tincup (Member # 5829) on :
Did everyone go to sleep already?
Guess I'll put this up there for the morning folks.
Party hardy dear.
Just write your little selves simple!
You are doing great!
Thank you!
Posted by Robin123 (Member # 9197) on :
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.
Posted by disturbedme (Member # 12346) on :
Robin - WONDERFUL letter! Posted by Monica922 (Member # 13496) on :
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.
Posted by Allie (Member # 10778) on :
This is mine...
Dear Connecticut Medical Examining Board:
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
Posted by aklnwlf (Member # 5960) on :
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!
Posted by Tincup (Member # 5829) on :
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.
Thanks for all of your efforts so far.
Posted by bettyg (Member # 6147) on :
more outstanding letters; robin, yours really got to me too!
keep posting them everyone!
Posted by Tincup (Member # 5829) on :
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!!!
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Posted by Tincup (Member # 5829) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Calling all Lyme Netters... or shall we say...
PARTY POOPERS!!!
Posted by Robin123 (Member # 9197) on :
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.
Posted by Tincup (Member # 5829) on :
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?
Maybe I should sing?
Posted by lymeHerx001 (Member # 6215) on :
Do you need our signature or do you need us to send a letter?
Posted by Tincup (Member # 5829) on :
Thanks for showing up!
We just need a letter. More like a note is fine.
If you just want to say something like..
"Please allow Dr. Jones to continue treating children and don't restrict his ability to do so."
That's enough!
Put your name and contact info on it and then send a copy to each of the following...
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.
Posted by bettyg (Member # 6147) on :
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~~! Posted by Robin123 (Member # 9197) on :
I think your letter is right on target with the issues and your ability to report as someone who was there at the hearing!
Posted by Lymeblue (Member # 6897) on :
love your letter ellenluba, I really like reading this letters cuz then I get to know more about my fellow lymenetters.....
Posted by Monica922 (Member # 13496) on :
FYI...I also sent mine to Blumenthal..CT Attorney General. email address is.... [email protected] Posted by Parisa (Member # 10526) on :
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.
Posted by Parisa (Member # 10526) on :
This is what I have so far:
Dear :
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 ]
Posted by Hides1 (Member # 6348) on :
December 15, 2007
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 ]
Posted by Parisa (Member # 10526) on :
Great letter Heidi. I think it's very important that Dr. Jones's patients be heard from.
Posted by bettyg (Member # 6147) on :
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! Posted by ellenluba (Member # 1707) on :
Thanks for the feedback on my letter.
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
Posted by Tincup (Member # 5829) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Posted by lymewreck36 (Member # 4395) on :
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 ............
.............
Posted by bettyg (Member # 6147) on :
mary, marvelous!! very touching about your daughter!
tincup,
i posted your link above to another lyme board;
www.mdjunction.com and gave them MON. NOON DEADLINE TO EMAIL THEIR LETTERS! Posted by Tincup (Member # 5829) on :
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.
Thanks!
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BettyG...
THANKS!!! Now go to bed or off with your head!
Posted by lymewreck36 (Member # 4395) on :
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
Posted by Robin123 (Member # 9197) on :
Great letters! Wrenching stories...
If we get a positive decision on Tuesday, great!
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.
Posted by Aniek (Member # 5374) on :
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?
Posted by Hides1 (Member # 6348) on :
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!
Posted by Cobweb (Member # 10053) on :
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.
Cobby
Posted by lymedesign (Member # 8791) on :
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,
Posted by Parisa (Member # 10526) on :
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.
Posted by FightFireWithWater (Member # 5781) on :
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).
Posted by Cobweb (Member # 10053) on :
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.
Thankgoodness!
Posted by bettyg (Member # 6147) on :
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!! ******************************************** Posted by pmerv (Member # 1504) on :
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.
Posted by pmerv (Member # 1504) on :
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.
Posted by pmerv (Member # 1504) on :
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.
Posted by pmerv (Member # 1504) on :
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.
Posted by Vermont_Lymie (Member # 9780) on :
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!
Posted by pmerv (Member # 1504) on :
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.
Posted by Lymetoo (Member # 743) on :
Thanks, Phyllis! I sent my letters thanks to your sample!! Posted by CD57 (Member # 11749) on :
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.
Posted by sometimesdilly (Member # 9982) on :
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
Posted by bettyg (Member # 6147) on :
phyllis, good letter you wrote here too!
QUESTION: WHAT IS THE CUT UP TIME/DATE TO GET CC TO SHIELA BY EMAIL?? thanks PM Posted by valymemom (Member # 7076) on :
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.
Posted by kam (Member # 3410) on :
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.
Posted by Tincup (Member # 5829) on :
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?
Posted by Tincup (Member # 5829) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Posted by merrygirl (Member # 12041) on :
If you would like you letters of support hand delivered to Hartford please email them to Sheila
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
Posted by Tincup (Member # 5829) on :
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!!
Posted by Tincup (Member # 5829) on :
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."
Amen to that. What a good message to end on.
Thanks Kam for coming through... again and again.
Posted by Tincup (Member # 5829) on :
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.
Thank God for good directions and turnip greens.
Posted by merrygirl (Member # 12041) on :
Glad to hear that they will be read.
keep up the good work everyone
Melissa
Posted by cbb (Member # 788) on :
So sorry I missed most of the party.
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
Posted by Lymetoo (Member # 743) on :
Kam...and cbb...Awesome letters!! Posted by Vermont_Lymie (Member # 9780) on :
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!
Posted by Tincup (Member # 5829) on :
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.
That ought to rock CT's boat!
Good work gang!
Thank you!
Posted by Tincup (Member # 5829) on :
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.
Thank you!
Together we WILL make a difference!
Posted by bettyg (Member # 6147) on :
kam, cbb, and many others,
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!
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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. Posted by cbb (Member # 788) on :
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.
Posted by FightFireWithWater (Member # 5781) on :
Tincup,
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.
Posted by Cobweb (Member # 10053) on :
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?
Posted by AliG (Member # 9734) on :
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 ]
Posted by AliG (Member # 9734) on :
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!
Posted by Robin123 (Member # 9197) on :
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.
Posted by AliG (Member # 9734) on :
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!!!!!! Posted by bettyg (Member # 6147) on :
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!
and robin's editing... Posted by Robin123 (Member # 9197) on :
Glad to be of help! Posted by Tincup (Member # 5829) on :
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 by bettyg (Member # 6147) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Your effort was worth it. Thank you!!!
I love it when a plan comes together.
Hee haw
Posted by Tincup (Member # 5829) on :
Be sure to see the Medical Board hearing online...
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bettyg![[Frown]](frown.gif)
If only she knew what she was doing.
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, at least they could probably tell it was a letter from a distraught human being.