Dr. Charles Ray Jones is facing criticism for his treatment of chronic Lyme disease

Mark Plonsky photo

This spring, Dr. Charles Ray Jones, a controversial and internationally known expert on Lyme disease in New Haven, was ready to quit.

For the last five years, Jones has been defending himself against accusations that he is violating standards of care. In March, the state Medical Examining Board declared him guilty of several charges.

He’s charged with treating patients without seeing them, prescribing medicine for children he’s never met and keeping improper medical records, among other things.

Jones argues that he has a six-month waiting list. In the interest of time, he orders blood tests before seeing patients. He once continued a prescription for an out-of-state patient after consulting with her mother, who’s a nurse.

Earlier this year, he was given four years of probation, a $10,000 fine and ordered to hire a monitor to examine his patient charts every month. The monitor, Jones expects, could cost between $2,000 and $10,000 a month.

“I can’t afford that,” Jones says. “I realized it’s hopeless.”

One day after learning of his punishment, however, a 7-year-old boy named Timmy came in for an appointment.

At an earlier visit with Jones, five months prior, Timmy exhibited problems like low muscle tone and no expressive speech. Another doctor diagnosed him with autism when he was 2 years old. Timmy’s mom noticed that when he was on antibiotics, his behavior became better. He exhibited fewer symptoms associated with autism. After he went off his medication, though, his symptoms returned to full force.

Dr. Charles Ray Jones at his office in front of a collage of photos of some of his 10,000 patients. (Kathleen Cei photo)Jones thought the boy had Lyme disease, not autism.

At that first visit, Jones says, he put his hands on Timmy’s cheeks and looked into his eyes: “I hope I have the key to unlock your brain,” he said. Timmy then squirmed out of Jones’s lap and began to run around the room.

At Timmy’s follow-up visit, one day after Jones received his punishment, Timmy “climbed into my lap, put my hands on his cheeks and said, ‘Thank you for giving me the key to unlock my brain.’” Jones says. “Then he hugged me.”

“That’s why I stayed in [medicine],” he says.

“He came in at a good time.”

One of the reasons Jones is so controversial is because of patients like Timmy: Jones’ diagnoses and treatments call into question those of other doctors. While other doctors see autism or mental illness, Jones sees Lyme. Jones thinks one of the reasons he’s so disliked in the medical community is other doctors’ pride.

Jones’ supporters are so passionate about him that they’ve been paying attorney’s fees to defend him in front of the state Medical Examining Board, which hears cases of medical misconduct and metes out punishment. The board has the power to revoke a doctor’s license to practice medicine.

None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children.

Still, the state says, Jones’ style of medicine is a threat to others. (Due to the controversy involved, the Connecticut Medical Society refused to comment on charges against Jones.)

Jones has lost this most recent case and a similar case previously. He’s appealed both to the state appellate court. The legal proceedings have cost him more than $1 million, he estimates.

The punishment of Jones is more severe than the punishment of other doctors faced with more serious charges. For example, a Greenwich doctor who used his own sperm to impregnate a client in 2008 was reprimanded and fined $10,000. He’s still practicing.

Another doctor was charged in 2005 with not meeting standards of care: Two patients died from post-operative complications; one died during surgery; he unnecessarily removed a patient’s appendix. There were problems with eight of his other patients. This doctor’s license was put on probation for two years (compared to Jones’ four years) and he was fined $5,000.

After eight days of hearings in Jones’ case, the Medical Examiners Board “imposed a level of discipline on Dr. Jones’ medical license that the Medical Board apparently felt was appropriate to address identified deficiencies within Dr. Jones’ clinical practice,” said DPH spokesman William Gerrish in a prepared statement.

By July 20, if Jones has not found a state-licensed pediatrician to agree to become his monitor, he could lose his license or his license could be suspended.

The monitor would visit Jones’ practice once a month to review his patient files. If the monitor disagrees with anything in Jones’ file, he or she is to report it to the state.

At a June hearing in Hartford, Elliot Pollack, Jones’ attorney, told the Medical Examining Board that Jones’ assistant asked 209 pediatricians for help. None responded.

That’s because the case against him is so well publicized and so controversial that no one wants to be involved, Jones’ supporters say. The state says none has responded, because Jones didn’t try hard enough: There were no phone calls made and no follow-ups with the 209 pediatricians.

A Massachusetts company that contracts monitors located one for Jones’ case. The company, however, would not tell Jones who the monitor would be and wanted him to sign a contract that Attorney Pollack found troublesome.

The board had little sympathy. “Either find a monitor or stop practicing,” said board member Dr. Henry Jacobs.

As of press time, Jones did not have a monitor lined up.

Jones and his supporters see the case against him as a case against treating and acknowledging chronic Lyme disease — intended to send a message to other doctors.

Lyme disease was discovered in the mid 1970s in Lyme, Conn. It’s caused by deer tick bites and can cause fevers, headaches, fatigue and a distinctive bull’s-eye rash. Long-term, the infection can spread to the joints, heart, nervous system and brain. The common treatment is antibiotics up to 28 days, but some patients and doctors, like Jones, believe that’s not enough for chronic Lyme disease.

Advocates of chronic Lyme treatment say neither the state nor the medical community is doing enough. Volunteer-run Lyme Disease Task Forces have popped up in towns around the state to educate residents on how to prevent and treat Lyme.

Others see chronic Lyme as a myth and say it’s misused to diagnose medical mysteries, like long-term fatigue.In any case, the Connecticut state legislature passed a bill in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. The law “allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.”

Robert Galvin, head of the state Department of Public Health (DPH), is one of only a few people to testify in 2009 against the bill, saying: “The unintended consequences of this bill will compromise the Department’s ability to protect patients with Lyme disease.” He said the bill left no flexibility, “particularly in cases where the care being provided to a patient deviates from current evidence-based practice.”

The bill passed unanimously in 2009. Jones and his patients hoped the law would protect him.

State Rep. Jason Bartlett says Charles Ray Jones is being 'harassed' for treating chronic Lyme disease by the medical community. (courtesy of Connecticut General Assembly)“Neither the Department’s initial charges, nor the Medical Board’s ultimate decision after the hearing, concerned the issue of chronic Lyme,” said DPH spokesman Gerrish.

“This case is about Lyme disease,” says state Rep. Jason Bartlett (D-Bethel), who sponsored the Lyme bill. “I think that law should afford Dr. Jones the protection he deserves.”

Bartlett says he’ll ask the state’s next attorney general to investigate whether the state DPH and the Medical Examiners Board are violating the Lyme bill.

Jones is being “harassed” for treating chronic Lyme, Bartlett says, and that the DPH and the Medical Examiners Board have a “vendetta” against him. He adds that the requirement to get a monitor is “garbage” and “ridiculous.”

“If the state thinks he’s such a danger, the state should pay for its own monitor,” he says.

“Dr. Jones is not being treated differently than any other practitioner who has a requirement for a monitor. All practitioners who are being monitored are required to find their own monitors,” says the DPH’s Gerrish.

Karen Gaudian, of Ridgefield, has two daughters, now 18 and 16, who have Lyme. They first became sick at ages 8 and 7. The eldest had severe fatigue. “The kind of fatigue that forces a child to crawl up the stairs. Taking a shower might be more than she could do in one day,” she says. Her other daughter had major stomach pain. Doctors blamed the stomach pain on nerves or a school phobia.

“But I knew she was ill,” Gaudian says. “You could tell by watching the way she’d hold her stomach. She was in a lot of pain, but she was still trying to play. I know my child and I knew there was more to it.”

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whitneycyclist  - Dismaying "news" article   |2010-07-15 14:26:05 What is so unfortunate about a physician being disciplined by a board of his peers? Who else should be in charge of maintaining professional standards? That ought to be an indication that this man's practice deviated significantly from that of his community, and may be dangerous. Also, members of the IDSA are highly trained, with a prolonged period of training, research, and the promise of only moderate remuneration compared with other physicians. I do not think that you would allow your mother to receive chemotherapy from a doctor who did not train in oncology. Why would you want your child to be treated by a physician who not only has not pursued advanced training in infectious diseases, but ignores accepted diagnostic and therapeutic standards? Reply 4   21

Marcus  - Wake up already.   |2010-07-15 19:19:42 Contrary to the obtuse opinion above, Dr. J is a viable alternative for those children forsaken by doctors who parrot textbook viewpoints and who are not sufficiently motivated to find the root cause of illness. In truth, most MDs have scant curiosity and tend to ignore patient symptoms in favor of imperfect diagnostic procedures and standards. If MDs were more curious, perhaps more cures would be discovered--for cancer, for lyme, and for other illnesses. Sadly though, MDs are at times a fearful lot. They are often not well-read after med school. Many times they are not even aware of all the medicine at their disposal. So cheers to the few MDs who do care about their patients and who are curious enough to do their own thinking without parroting everything they've seen in their textbooks. For many patients, it's not "all their head" but often a very real complex disease process that just begs for some curious eyes and some open hearts. Reply 18   1

Taylor's mom  - Try walking in our shoes!   |2010-07-15 21:35:49 On Whitneycyclist naive comment re IDSA guidelines for treating Lyme. They can not even diagnosis the disease let alone treat it. Thanks to the wonderful Infectious disease "specialist" It took 4 months for myself to get diagnosed and my daughter's rash was "ringworm" Until you walk in our shoes, do not judge. I too was like yourself, naive and uneducated in the complexity and controversy of this disease. I have had to learn first hand. I am a RN. The IDSA guidelines do not work for all. I am in my 4th month of treatment. My daughter her 3rd and although we have not been able to see the Great Doctor Jones, I am looking forward to my future appointment with him. Imagine yourself a mother, to watch your very own child be denied "lifesaving" treatment. The Lyme literate Doctors are true heros for risking their own lives and careers to help us. Dr Jones has given hope to many children who were once considered hopeless. He is a true Hero and God Bless Him! This disease and poor manner in which we have been treated has outraged me. I am now a Lyme advocate and support these wonderful doctors for their willingness to help. It is the patients duty to commit to an "informed consent" for this treatment. Knowing ahead the risk involved and that it is not considered the "standard" of care. The current standards of care are not effective and people are truly suffering. Thank you DR Jones and all the LLMD's! We LOVE You. Reply 16   1

Saving the children  - Why do you care?   |2010-07-15 23:23:56 whitneycyclist, Why do you care who or how we choose to treat our personal medical issues? I could give a crap who treats your cancer or what type of treatment you chose. If you were to get better I would be happy for you. Why cant you do the same? You must not have children.Imagine to have to watch your previously healthy child A+ not be able to walk, dress or feed themselves? Dr JOnes is truly a hero for giving these kids a second chance. Dont pass judgement on a disease that the CDC can not even develop a reliable test for, a disease where the treatment guidelines are flawed. Please educate yourself before you speak by watching a few clips of "Under our SKin" online. This will allow you to make an educated opinion rather than a comment you know really nothing about. You should focus your anger on the CDC, not the heros for caring. As far as danger, we are all aware of the risk of long term antibiotics. That risk far outweights the risk of undertreated lyme. We are educated and informed before we commit to a protocal. Educate yourself please. Reply 12   1

Forever Grateful  - Our Hero   |2010-07-16 09:26:12 For those who doubt...please check out "Dr Charles Ray Jones is our Hero" on facebook. THe stories from the children and parents are overwhelming. More Doctors should be like this hero. The children and parents who received care from this gentle soul will be forever thankful. We love you! Reply 12   0

Gary Engelman  - I am a 41 y.o. RN with Chronic Neurological Lyme.     |2010-07-16 18:06:36 For 14 years, I worked in ER's, ICU's, etc. Then one day I'm out with my kid trick or treating and get a stiff neck, blurred vision in my right eye and the worst headache of my life. ER workup shows nothing and I'm sent home. 3 mos. later, out of nowhere, my body goes into Sympathetic Overdrive as in overstimulation of no known cause. Dr.'s don't understand and I'm told it's Psychiatric. 5 Psychiatrists tell me they have never seen this and are stumped when mega doses of Benzodiazapine and other meds barely even sedate me and don't help this condition. A few months later, I get short of breath for no reason. I visit the ER three time for this and told I'm having a Panic Attack. IV Ativan 2 and 3mg at a time does nothing. I'm huffing and puffing away. Lets try Benadryl, someone says. 5 seconds after the IV push, my breathing returns to normal. Hmmm again, they are stumped. So I have to carry liquid benadryl wherever I go. A few mos. later, I notice when I stand up, my heart rate goes from 60 to 160 and if I sit down, it returns to 60. I'm done playing around and go to the Famous Hopkins Hospital. A tilt table test only shows what I tell them. They want to call it POTS (Postural Orthostatic Tachycardia Syndrome). Sounds good, the only problem is I didn't pass out during the test and my blood pressure remained normal while they gave me IV Isuprel to jack up my heart rate to try and make me pass out. Oh and people with POTS have no symptoms while sitting or laying. A heart catherization is done next, shows nothing. Many hospital admissions as time goes by because I'm now having Neurologicial problems. My right eye is drooping, I can't remember things, I get lost driving in my own neighborhood, I feel motion like I'm on a rocky boat just sitting still, headaches from hell, blurred vision in the right eye, and more. Tested for everything under the sun. Can't find anything, so it must be a Psychological problem. By this time, I have researched my symptoms and see they are consistent with Neuro Lyme. I get tested and bands arn't there. I see a specialist and Igenix show 2 pos. bands. No one wants to treat me from the IDSA and I'm now broke and can't afford an LLMD. I'm lucky and get approved for Medicare. New Dr. orders a SPECT scan. What do you know ? I'm not getting proper blood flow to my brain. How can this be ? MRI and CT are normal. I have no masses or lesions. Ah, it must be some sort of infection. ... Reply 12   0

mother   |2010-07-17 12:14:44 it is hard to respond to you in a reasonable tone...you, whitneycyclist, obviously do not have children, or have had a child "lost" in any fashion to a disease. Dr Jones does not ignore standards- he treats children, and they get BETTER-they get better after 5 or 10 doctors tell you (like they told my family) that your child had this mysterious affliction called autism, for which there is no test and no treatment. so you tell me- do you as a parent, wait for the politics to end so money can be filtered into the "appropriate research" which then goes through more red tape before someday, when your child is long gone, someone finally agrees that methods such as Dr Jones are beneficial? or, miss critical, do you accept help from a man who saved thousands of other children without record of injuring them? our son was given back to us by this man-your arguing a point in complete ignorance does nothing to help my child or any others. it just shows your narrow minded, slow to adapt brain thinks more of their ego than the good works of a VERY brave man. Reply 8   0

jeff daniels  - Researchers Need Help from Lyme Disease diagnosed     |2010-07-19 10:12:31 There are a number of research organizations attempting to better understand Lyme disease as well as to develop better diagnostic test kits. On the diagnostics side, biotechnology companies like SeraCare Life Sciences and BioSpecialties Corporation run a number of diagnostics research studies for people diagnosed with Lyme Disease, paying participants $400+ to donate blood samples which are used to develop Lyme Disease diagnostics test kits (see: http://www.idonateplasma.com.) On the research side, Columbia University, and the Lyme Disease Research Foundation of Maryland are researching the proteomics, diagnostics, and epidemiology of Lyme Disease. On the clinical trial side, the National Institute of Health' sponsor a number of clinical trials. There are many programs out there where you can GET PAID to help Lyme Research, the most active of which are below: http://www.idonateplasma.com https://tw itter.com/IDonatePlasma http://www.myspace.com/ seracare http://www.linkedin.com/pub/i-donate-p lasma-for-research/21/b09/726 http://www.facebo ok.com/pages/PAID-Plasma-Donations-for-Research/10 1071083280661?ref=ts Reply 4   0

Dagmara   |2010-07-19 18:47:55 whitneycyclist, shame on you!!!! I have a 10 year old that was bitten by over 30 ticks 4 weeks ago. I went to the ER and the doctor asked me to remove ticks from my daughter myself and sent me home with nothing, no treatment plan whatsoever. I called my daughter doctor and was informed that there is nothing to worry about. I called lots of doctors and nobody wanted to even talk to me. I had to send my child to europe to get treatment - that was prior I knew dr Jones exists - they know better how to treat the disease or/and are not afraid to do it. Because of people like you doctors like this guy can't help kids like my daughter. Don't comment on something you have absolutely no idea about. Reply 6   1

guest   |2010-07-20 13:51:04 this really saddens me to think someone who is experienced in helping the sick and who took the iniative to help when no one else did is being punished. we are human beings. it is inhumane to untreat the sick. a good doctor only wants to help. he is not looking at his checkbook. i know God is going to be there to help him and to all of us who need to be treated or diagnosed. God bless you dr. Reply 4   1

michelle   |2010-07-25 10:27:32 Gary E. you could be writting my story. 47 y/o with chronic neuro lyme. oncology/bmt RN for 24 years. sick on and off with wierd s/s since 2004. i cant believe what we are experiencing here is called health care. DR's afraid to treat patients, or support each other d/t legal, political issues. that is not what medicine is about. cetainly no " caring" in our health care. llmd's have a special place in heaven, esp. one's that treat children. Reply 2   0

Patrick   |2010-07-25 13:57:22 The general practice and infectious disease doctors are victims themselves. They have been sold a false bill of goods about lyme and the various co-infections from tick borne diseases. Anyone who has been passed from one doctor to another doctor and to more and more doctors will finally realize what a disaster this epidemic really is when they get to meet with a Lyme literate doctor who will give them the treatment they need. Most people think that doctors have all the answers and can cure almost anything. The treatment for this disease is 25 years behind the times because of the IDSA. Exactly what have they done to advance its testing and cure? Lyme disease is not going away. Let the lyme literate doctors treat their patients. The IDSA does not. Reply 3   2

sarum   |2010-07-27 23:58:45 I sure hope this Dr. Jones gets the backing he needs. If you have not lived the medical nightmare you really should keep your ignorance to yourself. It is quite obvious that scientific inquiring minds have been bred out of the medical profession and our health is "owned" by Big Pharma and the insurance companies who find it more cost effective to continue to perpetrate their lies unto death. Many are on disability that could be working if they only could get decent medical care. I know because I am living it. I am collateral damage of medical lies. It is more important to maintain the lies and the profit than it is to get people well and working. I know several people from nations with socialized medicine and interestingly, despite having full coverage here in the US, they prefer to take long vacations at home for most of their medical needs rather than have anything done here. These people tell me that their exact same Rx is not only waaaaayyy less expensive but that pills labeled the exact same make and strength as their US counterparts do a better job with less side effects. I also do notice that innovation does come out of those nations whose healthcare we scorn so it would be nice if for once, in this most crucial of issues, people in the US could come before profits. I have been told by many people that I have Lyme - none of them are doctors. I can't get a doctor to pay attention to me. I was at Mayo earlier this year but then they said that my insurance ran out of coverage for their services. So now I have to start all over with expensive invasive tests because nobody will take their test results and my insurances will not pay for these tests twice in one year. Since I don't have the money and I am too disabled to work and get the money I just have to live in the pain until I get to the ER and then it may well be too late. So my death may be on the hands of Mayo Clinic. Who will count for me? Who will fight for my family to receive restitution? Lastly, about that hypocritical oath? Patient dumping is not relegated to the uninsured. I have had multiple insurances and have been routinely dumped by most doctors because my known diagnosis are difficult and my unknowns do not have answers that fit into the medical standard parameters that they need to keep their practice in so they don't suffer what this Dr Jones is suffering. This is immoral and certainly drives up the cost of healthcare. It is my personal nightmare ... Reply 1   0

celeste Gallagher  - My Lyme diagnosis   |2010-08-18 18:13:45 Hello , I was bitten by a tick 5 yrs ago and I had a positive test but my doctor would just not give me antibiotics . I have questioned this ever since . I began to learn a lot about Lyme disease and I always have thought I have it , well of course they diagnosed me with Rheamatiod Arthritis , I have to take methotrexate with the side affects and danger from it.I finally after a 2 year search i found a Lyme literate doctor in Massachusetts My life has begun to change and I am on the antibiotic therapy ,for 10 days now. The ringing in my ears is subsiding and the cranial vibrations in my head have subsided also !!!I have so many symptoms and I could not get my docs to listen and test me they said the insurance companies dont like it ?My new Lyme doctor is right on top of it . I have the late stage lyme and I am relieved that i was just tested and I now know this is not in my imagination I am now on the slow road to recovery ,and Thankfull for my new doctor. If you suspect lyme keep searching for that one doctor that will help you and dont give up . Reply 1   0

John  - Putting Medical Boards on notice   |2010-08-19 22:31:17 I think its time the public started to become aware of how these unprofessional, uncaring decisions are killing and crippling children and adults alike. It should be these medical boards that should be put on notice, they by their lack of compassion, and ignorance. Furthermore, these review boards should have their medical licenses suspended and formally charged with murder and child abuse, for hindering, blocking and falsely accusing Physicians who are trying to desperately find answers any solutions for Lyme patients. Are there any Lawyers out there? Reply 1   0

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