Panel: Lyme Disease Doctor Should Be ...

Panel: Lyme Disease Doctor Should Be Reprimanded

There are 53 comments on the Hartford Courant story from Nov 29, 2007, titled Panel: Lyme Disease Doctor Should Be Reprimanded. In it, Hartford Courant reports that:

In a decision with national implications for how suspected cases of Lyme Disease are treated, a state physician review panel is recommending that controversial pediatrician Charles Ray Jones be reprimanded and ...

Join the discussion below, or Read more at Hartford Courant.

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Lyme in CT

United States

#2 Nov 29, 2007
I hope that this gives attention to the disease and for those of us who suffer from symptoms of this disease many years later. I have always felt that if the medical community is convinced of their findings, please administer a dose of Lyme Disease and treat. Since you believe it will be cured, what do you have to lose?
How about failing vision, constant aching, stiff joints, & lose of memory. Not being able to stand, sit or lie in any position for any duration.
Maybe they would enjoy prying themselves out of bed with an aching back, heading down the stairs when each step hurts more than the one before.
Shame on you for not acknowledging the pain of these suffering and sending us home to vitamins and Advil. Somehow, I think you doctors would not stand for it!

“Man bites dog”

Since: Apr 07


#3 Nov 29, 2007
A message to those Doctors who claim there is no such thing as chronic Lyme disease: PUT UP OR SHUT UP.

Either find a treatment that WORKS for those suffering from long-term Lyme symptoms, or leave alone those who are willing to step up and help those patients.

By targeting those who are willing to help Lyme patients, you show a complete absence of the most basic human decency.

Your arrogance is clear, your hypocrisy breathtaking.

Guilford, CT

#4 Nov 29, 2007
Today is a very sad day for the few great doctors trying to make a small difference.

In the end, it is all about money.

Most doctors and the drug companies want to 'treat' but not 'cure'.

Wayne, NJ

#5 Nov 29, 2007
This doctor who is going against the norm for treatment of lyme disease is getting a harsher punishment than the doctor who abused children and kept all that child pornography.

Medical review boards are a joke.

Hartford, CT

#6 Nov 29, 2007
LymeandMS wrote:
Today is a very sad day for the few great doctors trying to make a small difference.
In the end, it is all about money.
Most doctors and the drug companies want to 'treat' but not 'cure'.
The few good doctors gave the rest a bad name!

Chicopee, MA

#7 Nov 29, 2007
My 18 year old son was diagnosed with Lyme disease at age 13. After the "standard treatment", he was still never the same. It was like the symptoms never went away, and his grades went down to D's and F's, he was always tired, achey, not social, depressed....after a year or so I brought him to Dr. Zemel, having heard that Lyme disease can linger.

Dr. Zemel did a spinal tap, and finding only one band, said it was not Lyme Disease.

Here we are now four years later, and my son is failing in school, depressed, exhausted, in pain....and now we are trying to get him into Dr. Jones.

We believe, after doing exhaustive research and consulting with Lyme experts, that our son DOES in fact have chronic lyme disease and most likely Babesia as well.

Dr. Zemel, in my opinion, stole four years of my son's life...his teenage years. Had he made the appropriate diagnosis, and put my son on long term antibiotics, he would now be a high school graduate, and productive member of society rather than a failing, exhausted boy with low self esteem and no hope.

Thanks Dr. Zemel, for nothing. How many other children's lives have you ruined??????
Sherrill Franklin

Chester, PA

#8 Nov 29, 2007
It's hard to believe that opponents of Dr. Jones are complaining about his successful treatment of the children mentioned in the article. If antibiotics resolved the illness, what is the difficulty?

The maddening non-specific nature of Lyme is what makes it so elusive and so dangerous. There are so many unknowns. Isn't it reasonable to err on the side of treating?

We all need to be reminded that the Lyme bacterium is a second cousin to the syphilis spirochete. It is as inhumane to ignore the possibility of Lyme now as it was for medical institutions to refuse to treat syphilis sufferers in the ghastly Tuskegee experiments of the 1930s.

United States

#9 Nov 29, 2007
You can't argue with true believers.

Lake Worth, FL

#10 Nov 29, 2007
To: Those who don't believe in Chronic Lyme
From: A family stricken with Cronic Lyme.
What goes around comes around.
Everyday we, chronic Lyme sufferers, grow EXPONENTIALLY wether you like it or not. We are here ,we are not going away.
R Krop


#11 Nov 29, 2007
At this point, I just about consider Lyme disease and coinfections to be a modern-day Tuskagee experiment on the entire world. These diseases are spreading everywhere, affecting both people and animals, yet medical establishments are not taking them seriously. Lyme and coinfections do not always test well, yet people have clinical manifestations of the diseases and should not be refused treatment. Those refused treatment remain sick and many die. The refusal by infectious disease doctors associated with the IDSA and neurologists associated with the AAN to recognize these diseases is unacceptable when what we are dealing with are infectious diseases that target the nervous system and disable anyone unlucky enough to be exposed to these diseases, which at this point is all of us.

I don't think any of these doctors in the IDSA and AAN would be willing to go through the experience of exposing themselves to these diseases and leaving themselves untreated. I haven't heard of that medical experiment. Yet that is what they're asking the public to do.

Dr Jones has dedicated his life to the treatment of kids for Lyme and coinfections. His recognition and treatment of these diseases is in line with ILADS guidelines, a perfectly fine group of medical professionals who understand the symptoms of these diseases and treat them. Dr Jones is a hero of our time.

We will not be silent! America and the world deserve better! Better tests, better treatments, better access to healthcare, better education, better protection, and ultimately to figure out how to eradicate the threat of these spreading diseases to the survival of everyone and everything on this planet. This is not a light issue. It is central to our future survival. Dr Jones has done his fair share. Let him be!

Aurora, CO

#12 Nov 29, 2007
Having suffered for 12 years with needless illnesses and a brain rupture and finally diagnosed with two types of Borrelia and Babesia WA1 by IGENEX Lab and treated with long term IV therapy I am out of the wheelchair and have my brain functioning at a normal level. To have lived as an ALS patient was hell and I thank the Lyme Literate doctors for their much needed medical advise. When the antibiotics are stopped I revert back to a non functional human being. What do the nay sayers have to say about this?
Marianne Lordes

Commack, NY

#13 Nov 29, 2007
The IDSA tells Lyme patients: "We don't care if antibiotics improve or cure your condition. Your reality does not conform to our theory. So suffer."
One has to wonder why the IDSA is so vehement in its position against the treatment of Lyme with long-term antibiotics. It claims that it is so very concerned about the dangers of antibiotic drug resistence. Yet it it has no problem when some of the same medications used to treat Lyme, a potentially devastating disease, are prescribed to treat acne, a cosmetic condition, for years at a time. Clearly, big money Interests are at work here. This is no longer a medical issue, but one of greed.

Wayne, PA

#15 Nov 30, 2007
I feel sorry for Dr Jones and all the children who need hime to treat Lyme disease and other tick borne disease's.

Wayne, PA

#16 Nov 30, 2007
Cant argue with true believers. Well if you had this disease your argument would be on the otherside.tigran

“Man bites dog”

Since: Apr 07


#17 Nov 30, 2007
tigran wrote:
You can't argue with true believers.

Go ahead, argue with me.

I'd love to hear what in your expert opinion is causing these symptoms.

People with chronic Lyme symptoms aren't going to shut up and go away just because of some snide comments.\ on an online board.

People with these symptoms already suffer on a daily basis, so they have nothing to lose by pushing the issue with the medical community.

If the medical experts have determined that antibiotics have no value in treating chronic Lyme, how come the CT Attorney General has now opened a criminal investigation against the IDSA - the group that denies that chronic Lyme exists?
Mark Asher

Laurel, MD

#18 Nov 30, 2007
This article neglected to mention the fact that most of the views expressed in the NEJM review were refuted in the latest and most controlled study of antibiotic retreatment conducted by Dr. Brian Fallon of Columbia University and published by in the AAN Journal. The patients in the study had been previously treated with IV anibiotics yet showed moderate yet statistically significant improvement with re-treatment. These results were also seen in the 2003 study by Krupp. Unfortunately, the patients were not cured by the retreatment but until some other mechanism is discovered for the observed antibiotic response, it seems reasonable to assume that persistent infection is present. And this is the paradigm that Jones and other doctors of his ilk follow.
Sara Clarke

Brooklyn, NY

#19 Nov 30, 2007
If Lyme infection is not detected early and, therefore, treated immediately, persisting, long-term, multi-systemic health problems occur. I am sick with several autoimmunity deficiencies that occurred after my Lyme infection was supposedly treated in 1993. In my son's case, he was diagnosed with Autism at age 3-1/2. We lived and worked with that diagnosis, paying hundreds of thousands of dollars in therapy, hoping that he might learn to laugh, learn and love others. When my son was 6-1/2, we met Dr. Jones. Jones administered a Western Blot: my son had a raging Lyme infection, positive on five bands ("infected" according to the CDC, for whatever it's worth). Dr. Jones prescribed two antibiotics. That was five years ago. Today, my son is an A student, he plays travel soccer and baseball, he leads a pack of noisy, fun-loving boys. Dr. Jones changed my son's life. Lyme is a tricky, insidious disease, clearly not well understood by the "experts" who testified against Dr. Jones or the CT State Medical Board members reviewing the complaints against Dr. Jones. I don't want the State Medical Board, or any supervising doctor, or any Society of doctors (IDSA) involved in or regulating the confines of my private relationship with my physician. We chose to following the protocol prescribed by Dr. Jones; doing so ended in a complete reversal of my son's Autism and allows him today to say "Thank you" to his miracle-worker, Dr. Jones, and, in deed, hug him and tell Dr. Jones that he loves him.
DYAVO - Cincinnati

Cincinnati, OH

#20 Nov 30, 2007
Lyme Disease patients are successfully treated by pediatrician Charles Ray Jones, M.D. The Nevada state physician review panel votes to reprimand the good doctor!
What is wrong here? It is acceptable to the medical establishment and insurance companies to let children suffer and die from a treatable illness using FDA vetted medications.
Imagine if this same attitude was applied to experimental methods to deal with the AIDS. Any resources diverted from that epidemic simply will not be tolerated.
That political agenda might explain the vehemence with which the review panel is attacking the Dr. Jones. There is quite the hatred for "Straights" in the Gay Agenda.

Poznan, Poland

#21 Nov 30, 2007
Board Panel Members and Insurance Companies Workers can catch lyme disease too. When this happens, they will regret their decision and that they have no place to go for treatment.
then they will be in situation when no one listens.
Deborah Fantaci


#22 Nov 30, 2007
I am in support of Dr. Jones. I have lyme and have suffered needlessly for 7 years. We need to have more doctors like Dr. Jones.

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