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!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
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
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
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.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
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.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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bettyg
Unregistered
posted
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!
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posted
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...
Posts: 13116 | From San Francisco | Registered: May 2006
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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 ?
Posts: 422 | From CT | Registered: Oct 2007
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bettyg
Unregistered
posted
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!!
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posted
Thanks Posts: 422 | From CT | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
posted
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:
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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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,
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
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
Posts: 983 | From The sky | Registered: Feb 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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
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?
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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
Posts: 3905 | From USA | Registered: May 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tincup
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posted
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.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Monica - That is an AMAZING letter. Sure to turn some heads and make people stop and think. Thank you!!!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tincup
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posted
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!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
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.)
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
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.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
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,
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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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!!!
Posts: 983 | From The sky | Registered: Feb 2005
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posted
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.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
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!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
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posted
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.
posted
Mine, too. You know she wrote a book on advocacy. Was it called "The Power of One" or something like that?
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
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posted
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!!!
Tincup
Honored Contributor (10K+ posts)
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posted
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!!!"
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
time for bed, but reading about Luna's destruction is one sorry way to leave this party.
i have been to all but 2 states in this great USA and have to many parts of the world, and of all those places, i felt the deepest awe and sense of timelessness while walking amongst those ancient trees.
i guess the lesson i take away from Butterfly's story is that ignorance and hate seemingly can sprout anywhere and everywhere- even where they are least warranted- and that the fight for justice is never really over.
Given how limited is our time and energy, we all have to choose our battles wisely. i believe with every cell in my body that fighting for Dr. Jones' right to treat Lyme based on his vast clinical experience is fully worth every bit of whatever sacrifice any of us have to make to help him.
Now party on...
nighty=night, dilly Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
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posted
Anyone find this strange?
You know Shapiro testified against Dr. Jones.
But did you know that someone named, "Assistant Attorney General Daniel Shapiro" has been the Medical Boards counsel in the past year.. maybe longer?
They wouldn't hardly be THAT stupid to have THAT kind of a "conflict" of interest... would they?
tincup, you DO know why i no longer use caps beginning sentences, etc. !! but i'll send you a friendly reminder.
last year i typed 200 names/addresses on the TWO LYME PETITIONS FOR LDA AND LYNNE's !! most of them were non-stop, and my carpal tunnel set in. the next 2-4 days i could NOT type at all; could read only.
then with my sept. TWO falls damaging my right writ, we're back to square one again!
but you can kid me all you want to; it's easier on me. i've lowered my type A perfectionist personality to a B, " i can live with this" personality.
some wonderfull, tearful letters above. oops, there's page 2; i haven't read them all yet. off i go.
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Tincup
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Did everyone go to sleep already?
Guess I'll put this up there for the morning folks.
posted
Hey Tin -- I'm up! You posted while I was composing this I-don't-know-what-you-call-it statement. I mean, I'm all choked up right now, and need to unwind after this!
Ok -- continuing this party into the early morning hours, after spending a day involving disability transportation access, explaining to the train folks just why I've had to lie down on the train for the past ten years...and yes, I brought them Lyme brochures...
Ok -- this letter -- it's riding on a feeling bigger than I can really express, but I'll try. I am in awe of Dr J!
To all parties concerned(and yes, I'll get the correct addresses!):
"Life, liberty and the pursuit of happiness": one of the most well-known phrases in the Declaration of Independence. Today, I prefer to think of it as Interdependence, since it takes all of us to support such an outcome for each other.
Through decades of medical ministry to thousands of children sick from Lyme disease and co-infections, Dr Charles Ray Jones has restored that famous national promise to thousands who wouldn't have it without his time-tested knowledge and tireless help.
Dr. Jones recognized the symptoms of Lyme disease in the children from Nevada. Lyme disease and co-infections do not always show up in tests and are often treated clinically. Dr Jones has developed the clinical knowledge to do so successfully. He was called precisely because other doctors do not know how to recognize and treat these diseases.
I should know. I am also an example of a Lyme patient unrecognized by medical professionals. I unknowingly acquired Lyme disease from a known tick bite at age 27, and spent 25 years going to at least 100 medical professionals, who did not recognize the many symptoms. Someone online across the country clued me in. It has been an enormous struggle for me as an adult and continues to be. My adult life is nothing like what I thought it was going to be.
But at least I had my childhood. I played freely outside, enjoyed being in nature, and reveled in the beautiful places of our country on our many trips.
Now I am hearing reports of backyard infections in the suburb where I grew up. I can't imagine it. I mean, we had yards, and we played in them. As well as everywhere else. I can't imagine what everyone is facing today, including our most innocent, our children, who play. That's what they do. They play outside. To face becoming ill from doing what children naturally do is incomprehensible to me. And it is happening. And what of those who contracted Lyme in utero? They are ill from the get-go.
The future is our kids. They become our adults. We need as healthy a nation as possible so we can have a functional country. Many of us are not functional the way we should be; we don't need to condemn more people to that fate. We don't need to condemn this country and the world's countries to this fate. Yet this is the future all are now facing, with a spreading world pandemic.
Your decision regarding Dr Jones is a big one: Will you diminish the future of our country and the world by restricting the practice of the greatest Lyme-treating pediatrician? Or will you take the larger view in this controversy and allow him to continue to restore children's lives, employing his vast knowledge of how to do so?
Do you understand that by supporting Dr Jones in his treatment of children with Lyme that you are also supporting the future happiness of these kids' families, their friends, their schools, etc? In other words, their communities? This is the interdependence that I spoke of earlier, and it is a living, vital reality.
A custody battle should not stand in the way of the precious lives of children who deserve the promise of life, and a country and world who deserve the promise of their children. Remember the famous words of the founders of our nation and do your part to make them come true in our time.
Please acquit Dr Jones. Thank you.
Posts: 13116 | From San Francisco | Registered: May 2006
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disturbedme
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posted
Robin - WONDERFUL letter!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks, I think we all wrote great letters.
Tincup, you may use my letter and name anytime...anywhere. If one more person does not have to go through the mental and physical Hell I have been living...help them.
I am off to my daily IV trek but I'll check back later.
Posts: 422 | From CT | Registered: Oct 2007
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I am writing to voice concern about some of the conclusions made by the state physician review panel assigned to the case against Dr. Charles Jones.
I work as a biostatistician at xxxx University and I disagree with the panel's allegation that Dr. Jones erred when he ``diagnosed a disease when the ...medical history was nonspecific, the sign and symptoms were nonspecific, and the laboratory tests were negative.''
My primary concerns rest with the interpretation of the laboratory results and the weight given to the non-specific nature of the children's ailments.
The sensitivity of the Western Blot antibody test for Lyme disease is low (70 to 80%), which indicates a high percentage of false negatives, or missed positive tests.
Guidelines for the treatment and diagnosis of Lyme disease prepared by the CDC, IDSA and ILADS and publications presented in journals such as NEJM and JAMA that report on the sensitivity of the Western Blot antibody test for Lyme disease declare that Lyme disease is a clinical diagnosis, which can be supported by the presence of a positive test but cannot be ruled out by the presence of a negative test.
A negative Western blot antibody test should not be held against Dr. Jones.
Lyme disease is inherently difficult to diagnose; it manifests itself in numerous ways, many of which mimic other disorders, and the often non-specific history, signs and symptoms compound the difficulty in making a clinical diagnosis.
Therefore, it is crucial to have an experienced and careful diagnostician determine whether a patient is likely to benefit from treatment for Lyme. One important factor is whether a patient responds favorably to antibiotics. These two children responded very well to Lyme treatment.
In closing, I do not believe there is sufficient evidence to support this particular allegation. Thank you in advance for taking my concerns into consideration.
Respectfully,
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
What wonderful letters of support.
And yes, TC you already mentioned my letter earlier. Thank you!
Something popped into my head too after reading about Dr. J. and finding out that he marched with MLK.
What about the possibility of the NAACP helping out or being made aware of what's going on?
Whatcha think?
Injustice is the same where ever it might be found.
Anyways, am enjoying this kind of party. If I wasn't on so many antibiotics like most of us I'd bring the booze! Ooh, and something chocolate. Yeah!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
Good morning party animals...
I didn't know after all these years that something you all said or did could cause me to cry. I thought I'd seen it all. I was wrong.
Bless your hearts. This is so overwhelming.
wow.
What a way to wake up.
Tears on one hand after reading these letters... and amazment on the other hand cause I had NO idea any of you were that smart.
HEY.. I had to say something funny to break this funky mood I slid face first into after reading more of your letters.
Let me get my act together here... still groggy and ruffled.. and return to THE party place.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin...
Your I-don't-know-what-to-call-it statement is FANTASTIC!
That is what I call it!
I can't imagine the emotions this drew out of you and the energy. So I thank you dearly for doing it. It is a work of art.. and very powerful.
When you started out saying.. ""Life, liberty and the pursuit of happiness": one of the most well-known phrases in the Declaration of Independence."...
Well little Robin... I KNEW that I was in for trouble! How can this not be a moving letter when we talk about our basic human rights.
By the way.. I have that saying on my bathromm wall on a board I placed there several years ago. It is a constant reminder of what life should be about. Thank you for reminding me and others this IS what we fight for.
I smile to see your letter. GOOD WORK!!!
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MomfromTexas..
Your heart is as big as the state you live in. I am very pleased to see you also sent one out. Thanks so much!
And how wonderful when I heard you say...
"Can't everyone in our families send one. My son wrote his by hand."
Wow. That is a wondeful idea. Having the children write something is perfect in my opinion. After all it is their lives.
Thanks for being on top of the situation and for adding such a good idea to the "party" today.
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Monica said... "Tincup, you may use my letter and name anytime...anywhere. If one more person does not have to go through the mental and physical Hell I have been living...help them."
That is the spirit!!!
And such a kind offer. But I not only need your letter.. I need YOU!
And it looks like you've stepped up to the plate once again. Thanks!!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo Ho party girl Allie...
By the way .. where is LymeBlue with the music?
Anyhow.. Alllie...
Your letter is unique in that it mixes the science, legal and personal aspects together in a short but stong fashion that will impress the most complex minds ... and yet is still understandable to the everyday person.
How do you do that?
Good work!!!
I think the science is an important part of this equation and I am happy to see you've addressed it. The more "avenues" we take to show the entire picture.. the better!
You said... "The sensitivity of the Western Blot antibody test for Lyme disease is low (70 to 80%), which indicates a high percentage of false negatives, or missed positive tests."
I hope that hits them right between the eyes... and I think it will.
By the way.. I like your style too! Good writing skills.
Thank you... your effort to make this party a success is wondeful.
quote:Originally posted by disturbedme: Isn't it true that most of us think back nostalgically on our childhood, wishing we could experience it again? Children with Lyme disease who are allowed to suffer won't want to think back on their childhood when they are adults.
Excellent letters, all!!
Tincup, thx for getting us all to do this project together!! I expect that Dr J will get to read what we have written for him...
I think disturbed's quote here says what I was trying to get my head around last night -- I couldn't fathom losing childhood. Still can't. And this will be the psychological impact of early-age illness, unless children can be properly treated.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Robin...
Since the .. ha.
I forgot mid sentence what I was going to say. Too much party I tink!
OH. Since the attorney gets a copy of it all and I know they go over things very carefully.. I would bet on the fact he would see the letters.
I made a copy of mine and mailed one to him to be sure though. I want him to know we care.. and I care.
He might enjoy something like that in a Christmas card if anyone is inclined.
Ok dudes.. party on. I think I need to crash for a bit. I had a little water emergency today. All over three rooms upstairs and so bad it ran down the inside walls to the kitchen and living room and was pouring all over the down stairs floors. FUN.
Had I thought any quicker I'd have taken a quick bath in it before mopping it up and having to shut down the main water line to the house.
But all is well now... just wet!
Later gators.. and party on! Keep those letters coming.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo party animals..
Has anyone invited the members on other groups to join in our party? It IS for a good cause.. and they are welcome.
I am sure they wouldn't want to let down Dr. Jones.
I am really surprised more LymeNet folks aren't here. Sorry they are not feeling like helping out. Letters are needed from everywhere.. and this is the first and only time we've been able to reach the Board members.
posted
Hey Tin -- I just did this -- posted on CaliforniaLyme -- almost 600 state members -- about your invitation to letter-party here this weekend! And a few Californians have already posted their excellent letters on our state site.
So for anyone who wants to post this invitation on your state's Lyme group, this might be a way to get some people over here this weekend.
Now don't go changing your post title again! -- I had to correct it from Thursday/Friday party to weekend party -- guess that'll safely cover for both Saturday and Sunday, and then I'll just have to worry about Monday?...lol
Now I'm starting to feel sorry I can't be in Hartford next Tuesday! Maybe one day we'll be able to tele-clone ourselves to be in multiple places at once!
And thx for your kind words to me earlier -- basic human rights -- guess that's what I was trying to address.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Great idea Robin...
Welcome to all!
I know it must be hard Robin, not being closer to some of the events.. but next year the LDA Conference will be in California! I hope to see you there!
And we REALLY need folks who can't attend this event to do the other things that are so very important.. like you are doing here.
There are so few steady volunteers.. and the ones that are working all the time get exhausted... so when something needs doing... we need EVERYONE to pitch in.
And it is so nice to see all the ones that do!
Now how can we rattle more cages and get folks to write a letter and party too?
posted
Ok. Here's my letter to the medical board. I won't send it for a little while, in case someone thinks I need to change it, so let me know ASAP.
ear Medical Board Members I am writing in support of Dr. Charles Ray Jones, who has returned thousands of suffering children to normal, happy lives.
I don't know how many children you have seen in the advanced stages of Lyme disease, but it is often a horrific, hearbreaking presentation.
I sat in the state board hearings of Dr. Jones' case and listened to the mother of the children in the case describe that her son used to spend most of his free hours at home crying from the pain of his illness.
Earlier, I had seen that same boy walk smiling into the hearing room , and go immediately to Dr. Jones to hug him. I saw him sit quietly, apparently painlessly, during the hearing. I heard the mother's testimony about the child's incredible progress during Dr. Jones' treatment.
The panel focused instead on the fact that Dr. Jones had renewed an antibiotic prescription for the child before seeing him. This was a renewal of a five day antibiotic prescription for a serious cough which had prevented the child from returning to school.
While I understand that the panel was convened to investigate this issue, this scene highlights the absurdity of investigating a physician like Dr Jones for so small an issue, for doing something that many, many doctors frequently do in order to help a patient.
The decision by the panel also seemed to be setting a precedent dangerous for the treatment of all Lyme patients in the future. In sanctioning Dr. Jones for treating despite a negative Western Blot, the panel ignores the unreliability of the test and the accepted role of clinical judgment in treating Lyme disease.
Dr. Jones does not deserve to be punished, nor do the children who will have their treatment limited if this brilliant physician is not permitted to continue freely using the clinical judgment developed through returning thousands of Lyme diseae patients to health. To sanction him seems simply immoral.
I hope that the entire state medical board has more latitude in making decisions and can look at the big picture in deciding whether or not to sanction Dr. Jones. I hope that you make the moral, rather than the bureaucratic, choice and remove the sanctions.
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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bettyg
Unregistered
posted
ellen, OUTSTANDING!! send as is;
make 2 minor changes ... add D for dear;
2nd to last paragraph sentence; disease; add S.
your letter was very meaningful; you attended the sessions and could report 1st hand what you saw and heard take place.
loved how you showed the young boy going to dr. jones and HUGGING HIM! excellent~~!
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