Feeling the pressure: An update on Dr. Charles Ray Jones
Many people ask us, What’s happening with Dr. Jones? For those of you unfamiliar with the history of Dr. Charles Ray Jones, the Lyme pediatrician featured in UNDER OUR SKIN, you may want to watch this 2-minute interview with Dr. Jones before you read on.
Dr. Charles Ray Jones, a 79-year old Connecticut pediatrician, has treated more than 10,000 children with Lyme disease over the course of his career. In addition to seeing patients six days a week, Dr. Jones has spent the last four years and hundreds of thousands of dollars defending himself against state medical board charges of “inappropriate” treatment of children with Lyme and other tick-borne diseases.
In late 2005, a divorced Nevada father who disputed having to pay half of his children’s Lyme disease medical bills filed a complaint with the Connecticut Department of Public Health (CT DPH) against Dr. Jones. After investigating the complaint, CT DPH brought charges to the state medical board, alleging that Jones diagnosed Lyme disease in the children without examining them; that he failed to consider other causes for their symptoms; and that he improperly prescribed antibiotics.
According to the mother, who is also a registered nurse, Dr. Jones never diagnosed her children before their in-person exam: After an in-depth phone consultation, he simply agreed to renew her son’s azithromycin prescription for the chronic cough that was preventing him from going to school, until she was able to fly the children out to Connecticut for an exam. Long story short, Dr. Jones treated the two children for Lyme disease, and they got better. Dr. Jones got dragged through the courts for months.
After two years of hearings and untold expenditures of taxpayer money, the CT DPH issued Dr. Jones a reprimand; placed him on probation for two years; and ordered that he pay a civil penalty of $10,000. This ruling is currently in appeal because of alleged bias with one of the medical board members.
On January 6, 2009, a second round of medical board hearings began, this time questioning one of Dr. Jones’s clinical diagnoses of babesiosis, a Lyme co-infection caused by the malaria-like parasite Babesia. Expert testimony against Dr. Jones was provided by Dr. Peter Krause, who testified that a babesiosis diagnosis ideally should be made only after a positive blood test. Dr. Jones and many other tick-borne disease specialists base their diagnoses on test results, history, and symptoms, because the tests don’t always detect all of the Babesia strains and patients with suppressed immune systems don’t always test positive.
It’s important to note that Dr. Krause has a patent pending on a Babesia diagnostic procedure, and an excerpt from his patent application says “presently, no optimal test is available for the diagnosis of babesia.” By supporting a standard of care that requires a confirmatory test before treatment, Dr. Krause stands to earn more royalties from his “invention.” What’s more, Dr. Krause is also an author of the 2006 Infectious Disease Society of America (IDSA) Lyme disease guidelines, which are currently being re-reviewed by a conflict-free panel upon orders from the CT attorney general’s office. For a summary of the IDSA Lyme panel’s financial conflicts, see clip #2 here.
Dr. Jones supporters and Lyme disease patient advocates claim that the CT medical board hearings are politically motivated, and largely driven, behind the scenes, by the IDSA and insurance companies. They emphasize that none of the children in these cases were harmed; in fact all of them got better under Dr. Jones’s care. The CT medical board, based in Hartford, CT, the “Insurance Capital of the World” sought to impose a four-part Lyme standard of care after the hearings had ended. This standard would make it very difficult for physicians to diagnose and treat Lyme disease based on clinical criteria, and for patients to get insurance coverage for those treatments. Advocates cite the ILADS treatment guidelines, which present evidence that Lyme is a complex multi-systemic disease that must be diagnosed based on exposure, history, symptoms, and tests, given that the currently available Lyme tests miss well over half the positive cases. They also believe that if Dr. Jones is driven out of practice, it will send a chilling message to the mainstream medical community – it’s not safe to treat Lyme patients – and this will result in more truly sick patients being denied care.
In the meantime, Dr. Jones wishes to convey his sincerest appreciation to all of his supporters. Because of generous donations to his legal defense fund, he has been able to continue treating desperately sick children during the four years of legal proceedings. Feeling the pressure of the 37% increase in Lyme disease cases from 2006 to 2007, Dr. Jones’s office is averaging three new patient calls a day, in addition to training new Lyme-literate pediatricians through the Turn the Corner Physicians Training Program.
[Photo caption: Dr. Charles Ray Jones examining Marlena, the young ballet dancer featured in UNDER OUR SKIN.]
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I am truly sickened that this is happening to Dr. Jones. He has done nothing but serve others, and he is being punished for that? My thoughts continue to be with Dr. Jones.
I also want to thank Under Our Skin and Turn the Corner Foundation for EVERYTHING…including this incredibly well-written and informative blog.
It’s a must-read for us all.
Thank you so much for the blog and the wonderful movie. It brings tears to my eyes just thinking about it. After ten doctors and nine months, I can relate to the pain and suffering. Today was my first day of antibiotics and I’m hopeful for the first time in a long time.
Greed is not only in the Corporate world. As a Lyme’s Disease survivor I Thank You for this production and may many be blessed and enlightened by it.
It seems to me the problem now is the State of CT. Could we all email the bureaucratic idiots of the State of CT about this to support Dr. Jones?
nicole age 16 began her treatment with dr. jones 3.5months ago for lyme, bartonella and babesia. slow progress is being made. i cannot imagine what nicole’s life would be like without dr. jones knowledge and compassion. we left canada back in july as nicole was not being diagnosed and have made our way to connecticut and dr. jones.
i have put a copy of the movie under our skin in the hands of the librarian in new haven where we are living during treatment. perhaps other individuals with lyme can do the same with their hometown libraries. the only way to advance knowledge about lyme is 1 person at a time. each one of us must join the fight to save the lyme literate doctors. thanks to them our lives and those of our loved ones with lyme will be better. thanks so much to the under our skin team. powerful, powerful documentary.
I too hope that Dr. Jones will be able to treat children and others who are suffering with Lyme disease. What has happened to him is no more than a “witch hunt” and the perpetrators are doing a huge disservice to the lyme community. But we will overcome!
I had the pleasure to meet Dr. Jones this week. He is a superior doctor. He spent 3 hours with me and my son and did a thorough exam as well as a long history analysis. He would not prescribe anything for my son until his results and history were sent to him from his pediatrician. He also did an extensive bloodworkup on my son and was very thorough. Dr. Jones is an asset to the lyme community and WE the public need to speak out and support Dr. Jones! He is the BEST of the BEST, the most caring, loving doctor, and his love for children is recognized the minute you meet him.
Dr Jones,
Thank you for helping so many children.
We are behind you– keep up the good fight.
Chelsea C.
I had the pleasure of meeting Dr Jones at the January08,
conference in St Petersburg Fla. I found him to be a genuine nice guy and doctor VERY concerned with helping his patients.
Given that they are children and cannot for the most part complain about specific symptoms as an adult. I am glad Dr Jones is alive and practicing in any capacity. I am however very angry about what has happened to him as a result of healing his pediatric patients for if there is one thing that makes me very angry, it’s that these tick borne illnesses do not discriminate, they will make anyone of any age or race, extremely ill, and if not treated very dead.
Thanks Dr Jones
zman
Thank God for Dr. Jones. He is a man of principal who has helped thousands of children. He stood up and fought to treat very sick kids as he saw fit, despite what others thought and despite what he has lost in doing so.
Doctors like him come along once in a lifetime. My family is blessed to have met Dr. Jones and to have my kids treated by him.
It’s a national disgrace that this good man is going through legal hell. IMHO the charges that have been brought against him are bogus, to say the least.
Please everyone, consider contributing to his legal fund. IMHO, no contribution is too small. If he is defeated by the IDSA powers-that-be, we, and more importantly, our children will suffer a tremendous blow.
His office phone is 203-772-1123. I’m sure the staff can advise how to contribute.
This is like persecuting Mother Theresa. Dr. Jones you are one man in a billion. As I enter the health professions to combat Lyme, I hope I carry one iota of the compassion and beauty that radiates through you – that will make me an amazing nurse.
I just wanted to say that I am saying my prayers for him…he will truly get his reward from the greatest ‘Scientist’and Healer’…May he always be happy doing what God gave him such a gift for…healing. What doesn’t kill you makes you stronger…and He has always put enough good in this world and enough knowledge to conquer the bad…otherwise none of us would be here…God bless him and keep him…NEVER GIVE UP!
Cathi
As a patient who suffers from chronic Lyme as well as a coinfection Bartonella, I am so incredibly grateful to this film and to LLMD’s like Dr. Jones. A modern day Hero admist the ignorant and selfcentered Dr.’s opposed to treating Lyme, How blessed we patients with Lyme as well as the thousands of children this wonderful man has treated are.
I will write as many letters as possible, in support of Dr. Jones and all the other courageous and devoted LLMD’s out there. Thank you Dr. Jones.
Joyce Callahan
Dr. Jones and to all the LLMD’s out there,
Patients and their families are with you in this fight. We stand to lose doctors who have spent years learning about TBD if the IDSA has their way. Please make your voice heard!! Even if you write one sentence by April 3rd in favour of long term treatment/support of the experience of ACTUAL treating physicians not the men who sit in their ivory towers at the IDSA damning sick people to suffer while they stand to reap profits.
I truly know the only way to change things is one person at a time.
AND AN INFECTED TICK BITE TO EACH MEMBER OF THE IDSA WHO STAND IN THE WAY OF TREATMENT FOR OUR CHILDREN. I WILL NOT BE SILENT AND LET SOME MADMEN DICTATE A LIFETIME OF SUFFERING FOR MY DAUGHTER. I AM MAD AS HELL AND I AM NOT GOING TO TAKE IT ANYMORE.
This documentary is exactly what the doctor ordered. Wake up IDSA.
Edmund Burke’s wrote: “All that’s necessary for the forces of evil to win in the world is for enough good men to do nothing.”
I have met with Dr.Jones in consultation for my son, who was refused treatment for CDC positive Lyme disease in Canada; and who has suffered myriad psychological symptoms for years.
Dr. Jones would never prescribe anything without a thorough exam, and the results of extensive blood work. It is a shame to our democracy that such a feeling, dedicated, caring and knowlegable treasure of an elder physician be put through this witch hunt – especially considering the stresses that this must cause him – and the distraction that he inevitably suffers from this harassment. I am of African decent. To my mind this man should be venerated – and we as a society should be allowed to learn from his life experience. Bravo to Dr. Jones for keeping on.
He is a SAINT!!!!!!! Dedicated physicians like Dr. Jones are rare. By the way there is a charitable site called “iGive”. It is a way to give with our buying. Dr. Jones legal defense needs funding and this is a painless way to contribute. Delia
Dr. Jones deserves the highest praise and enormous appreciation from the entire world for the
over TEN THOUSAND and ONE ( my daughter, Charlotte) children, whom he has
treated and healed. How many of you reading this have added to the world’s
good even one iota, in comparison to Dr.Jones?? Can you even believe that Dr.
Jones has to fight in the twilight of his life, after all the good he has done in
his long lifetime? I feel sick just thinking about the pain that these evil people have
caused a soul as beautiful as Dr. Jones. The world is a crazy, upside down and
insane place , when a truly humble and great man like Dr Jones must suffer in this way. PLEASE , I urge everyone to call his office and contribute $ to his legal defense
fund. I will be writing a check tomorrow. Can we ever thank Dr. Jones enough?
[...] UNDER OUR SKIN Blog » Feeling the pressure: An update on Dr … – Feeling the pressure of the 37% increase in Lyme disease cases from 2006 to 2007, Dr. Jones’s office is averaging three new patient calls a day, in addition to training new Lyme-literate pediatricians through the Turn the Corner Physicians …. As a patient who suffers from chronic Lyme as well as a coinfection Bartonella, I am so incredibly grateful to this film and to LLMD’s like Dr. Jones. A modern day Hero admist the ignorant and selfcentered Dr.’s opposed to treating … [...]
the levels of corruption that our system of healthcare reinforces are nothing short of appalling. it is better to make money and strangle the life out of people in order to harness power than it is to heal the sick. why is this systemic problem not held to the standards ot eh hippocratic oath? on small scale it is an indubitable constraint on behavior. but when billions of dollars are at stake it is regularly dismissed and/or misinterpreted under totally legal assumptions.
[...] are not mandatory, they have been used as legal hammers in removing the medical licenses of both Dr. Charles Ray Jones and Dr. Joseph Jemsek, two prominent Lyme-literate physicians who diagnose based on symptoms, [...]
sorry i dont have any money please keep treating the children
We have never met Dr. Jones, but sent a contribution because this persecution of him MUST END! We pray that he will prevail. God Bless you, Dr. Jones, and thank you to Under Our Skin for keeping us notified on this heartbreaking case against a wonderful man.
In the name of Jesus Christ of nazarete as authorised by the Lord God Almighty;I hereby declare and release the double portion of the Healing Anointing of the lord upon you and your ministry. Trust in the Lord; he is who he is. Anything your hands touch will prosper and miracles will take place in the name of Jesus and no weapon formed against you shall prosper as God is in control. Amen
Despite a major economic downturn and extremely limited funds, the CT state Department of Public Health chooses to spend taxpayer money to prosecute the foremost Lyme pediatrician in the state. This prosecution is exactly why CT passed the Lyme Physician Protection bill #6200 unanimously in both houses and signed it into law.
The CT DPH doesn’t get it. This is clearly a grudge match. The entire DPH management needs to be changed. How can the DPH think that spending CT citizen’s money this way is more important than producing Lyme literature and educating Health Depts. across the state about tick-borne diseases? They’ve made the effort for H1N1, why not for the #1 vector-borne disease both in CT and the US… Lyme?
The CT DPH has no plan for tick-borne diseases other than to change the methodology for tracking Lyme in order to make it appear to be less of a threat.
Long after we’ve forgotten about H1N1 and Bird Flu, most of us CT residents will still have tick-borne diseases in our back yards.
Is there anyone in CT who is proud of our DPH and happy with their work in this area? Anyone that is who doesn’t profit by their actions or lack thereof?
-o0o-
[...] To learn more about Dr. Jones’ legal battle click here. [...]
All I can say is Thank God for Dr. Jones and all the Lyme Litereate Doctors out there. My husband contracted Lyme Disease with 3 co-infections in 2007. If it wasn’t for finding our Dr. Steven Bock, my husband may not have made it. The lousy insurance companies and the corrupt doctors on the panel that stand by the out-dated standards should all loose their licenses. When it comes to the almighty dollar, I guess life is not important to them. We all have to stand by our convictions and keep trying to have these standards change. We’ve started a Lyme Support Group here in Saratoga Springs, NY and hopefully everyone who has Lyme, knows anyone who has Lyme or just wants to educate themselves about this dibilatating disease, will start a support group. Keep pressure on the Insurance Companies and the politicians. Remember the “Squeaky wheel gets the oil”. Never give up hope.
Good luck Dr. Jones and God Bless you.
Linda Bedell-Kwiatkowski
God Bless Dr. Jones, if not for the great doctor
our son would still be bouncing from nuerologist to nuerologist at the two most reknown hospitals in Boston.
Despite his accurate diagnosis and treatment the physicians we saw prior to Dr. Jones still stuck to their guns that this was a virus that ran its course…
merely a coincidence that our son was suddenly back to
were he had been after a year of suffering and pain.
Dr. Jones’ heart, knowledge and courage are second to
none.
At the age of 11 i was diagnosed with lyme disease. for a year previous doctors couldn’t figure out what was wrong with me. I began treatment shortly after my diagnosis, receiving numerous failed treatments. Insurance companies stopped paying and i continued to worsen. My mom found Dr. Jones and we immediately set up a appointment with him. I have been a patient of Dr. Jones for 4 years. I was able to recover from my lyme disease in 2008 with great thanks to Dr. Jones. I am now 18, a senior in high school, and have been re-diagnosed with lyme disease along with co infections bartonella and rocky mountain spotted fever. I continue to this day as a patient of Dr. Jones. my family struggles with insurance companies on a daily basis and we pay out of pocket for my treatments. I can not imagine how my life would be with out Dr. Jones, and honestly cant say id be graduating this June with out him. I cant thank him enough for everything he has done for me.
Thank you UNDER OUR SKIN for this wonderful movie, i think its amazing what you have done. people have a better awareness of this horrible disease, and not only the symptoms which take over your life, but the struggles one has to go through with insurance and many other issues brought with this disease. I have suffered congative issues, sever fatigue, sever arthritis, gastritis complications and much more. it is extremely frustrating to have no one understand what you are going through. so thank you for putting that into perspective to many people.
God Bless Dr. Jones!
I met Dr. Jones almost 30yrs ago as a Medical Assistant student, when my instructor took us to his office. He had been her children’s pediatrician.
I so loved him then that when I had my own children, I only visited him and decided that my children would be lucky to have this wonderful doctor as their own.
I have two healthy sons, who do not suffer from Lyme Disease, but I know Dr. Jones has been fighting this battle for as long as I have known him.
I was forced to leave Dr. Jones’ practice due to insurance reasons and lucky for me my children were well past the stage of needing a doctor on a regular basis.
I have never met another pediatrician that I trust the way I do Dr. Jones, to this day! How sad this world is that he has to contend with this constant heartache! And yet he sooooo loves the children he helps!, and continues to do so, no matter the cost! That is a true doctor