Join the discussion below, or Read more at Hartford Courant.
#23 Dec 6, 2007
Well said. Treatment without examination is blatant malpractice.
#24 Dec 6, 2007
As a Lyme patient, I've paid close attention to Dr. Jones and now this legal circumstance.
For me there is simply no argument given one major sticking point. The children both significantly improved in health, Dr. Jones may have been incorrect in his diagnosis, but clearly he was correct in the medication prescribed, hence cause and effect. Children sick, antibiotic, children get better. Oh, really?
Dr. Jones had a right as a physician to weigh the consequences of leaving the children untreated out in Nevada verse the risk of antibiotic therapy. Let's not forget that the mother had other physicians monitoring these children in case there may be a problem with the antibiotic therapy. She is after all a medical nurse.
Once again the controversy appears. Lyme Disease is debilitating based on Dr. Jones knowledge. The children were suffering greatly. Was the risk of prescribing an antibiotic that may harm lower than leaving the children untreated? He thought so based on his medical experience.
I keep hearing how the IDSA and other societies who offer "recommended" guidelines claiming "We're not saying doctors"have" to follow them, they're merely guidelines" -- and then when a physician "doesn't" follow them, suddenly this happens. How about the fact that insurance companies base their policy of payment for treatments not on the individual physicians judgment and diagnosis, but rather the "societies" guidlines. Interesting, really.
This is in-fact all about the controversy surrounding Lyme Disease and clearly whoever wrote this doesn't understand that controversy. At the core is the fact that there is no accurate test to objectively diagnose Lyme Disease. The current testing has been clearly held as inaccurate through rigorous scientific testing. Both sides agree the testing is not as accurate as it should be.
So, if the controversy has nothing to do with this fact, why suddenly is "Testing/Western Blot negative" suddenly appearing in the boards ruling?
If this situation happened with another disease in which controversy didn't exist and clear limits were established, this wouldn't have happened.
A mother in Nervada wouldn't have had to seek a physician nearly 3,000 miles away to treat her children if physicians who treat Lyme based on the International Lyme and Associated Disease Society were allowed to practice their standard of care. However, Jones did what he believed was in those childrens best interest, and the result was work the risk.
#25 Dec 6, 2007
Dr. Charles Jones, pediatrician, successfully treated two children of a Nevada mother for Chronic Lyme Disease. For this he is being sanctioned by the Connecticut State Medical Board!
This is insanity! The "Approved Standard of Treatment" is neither rational nor scientific. It is exactly equivalent to a two week treatment of tubuculosis or AIDS with an antibiotic suitable for teenage acne. It can't work with a slow growing, complicated infection that is caused by the Lyme Disease bacteria.
The prestige medicine profession is degraded by the slavish compliance to "Approved Protocols". If this ruling is forced, doctors will compelled accept the death and disability of their patients, or be forced out of the practice of medicine.
This whole situation is ridiculous. FDA approved medications are already on the market, and work for treatment or cure of most cases of Lyme Disease. Yet, these tools are being withheld from doctors and their patients.
Why? It is for the Medical Board to explain is great detail, and see if it stands to peer review by the people on the receiving end of an idiotic policy.
#26 Dec 6, 2007
Currently struggling with Lyme Disease myself out here in the hinterlands of Cincinnati, where doctors are just not familiar with it, I understand full well how this disease can be diagnosed without actually seeing a patient in person. When I found a deer tick lodged in my head - one that I brought with me back from a county in PA with a current high rate of Lyme Disease being reported - and within 3 days developed what I learned to be classic symptoms of acute Lyme Disease, it was easy to discuss these symptoms on the phone with my doctor and to conclude I should take antibiotics immediately. I have frequently had doctors prescribe taking antibiotics for such things as sinus infections, without ever having been seen, just by reporting of exact symptoms over the phone.
Unfortunately, the standard treatment "according to the book" protocol, while initially relieving all symptoms, proved to not be enough for me, as all the symptoms came back after a month of antibiotics. The spirochete bacteria (which is in the same family as syphillis, I understand) is insidious and can evade the attack of antibiotics in numerous ways. There are so many strains of the bacteria, that it is challenging to treat with certainty. A year and a half later and now needing to drive seven hours each way to see an expert in Lyme Disease, I WISH I had a doctor who would treat me long distance over the phone! For those of us suffering with this chronic ailment, traveling is not easy and it is very expensive. While I do not know Dr. Jones, I applaud his willingness to help a desperate parent by a phone consultation and treatment recommendations. And it seems like the outcome - recovery for these two children - is proof in the pudding that he was right.
#27 Dec 7, 2007
The problem with this editorial has much to do with failure and it has to do with laziness as much as anything. Opponents of long term antibiotic therapy have flipped rationality topsy turvy by their inability to offer an alternative. The AMA has said that therapies need to be applied with the intention of reaching a cure. By using a cookie cutter approach with a fixed duration of antibiotics, you run the risk of not getting all of the bacterium. Short term antibiotics would leave the more resistant bugs whereas long term would give the patient's immune system a better opportunity to get on top of the disease. Topsy Turvy! It's like trying to hard boil an egg in warm water instead of boiling water. Rather than trying to turn common sense on it's head, why can't editorialists do a little research?
What is the alternative to long term antibiotics for chronic Lyme Disease patients?
#28 Dec 7, 2007
BIll Tyner asked: What is the alternative to long term antibiotics for chronic Lyme Disease patients?
I am a support group facilitator in the highest Lyme infection spot in California.
Suicide is an alternative to living without treatment.
Or if you are really bad neuro Lyme you can wait until you die of some horrible complication like anoxic encephalopathy causing seizures, stroke, coma or death. Or die of cardiac complications, or die of kidney failure or die of respiratory failure... or siply live in terrible, excruciating chronic pain and disability.
Kevin Ring was told there was no further antibiotic treatment avaialble. From a newspaper article on him,
"Kevin Ring was so devoted to his kids, to his school, that the principal called him a hero. So it came as even more of a shock when Ring took his own life. His back ached. His temples throbbed with migraines so severe that he dropped his head in his hands every now and then. He wore a morphine patch. He took so many pills that his 10-year-old son mapped out a medication schedule on their home computer.
Kevin Ring. He was born in Massachusetts on New Year's Eve 1963. He died on June 28, in a bathroom in a park in Decatur, a suicide note in his wheelchair."
Locally we had a tertiary Lyme patient, 37 years old, who was going to be put into a nursing home. He was told by his doctor that there was no further treatment for him. He had his girlfriend/fiance' go to the Pharmacy and gave her a long list of things to buy-
more than 30+ items
all these things he told her he needed in the care facililty. He was supposed to be resting before he was moved to the facility later that day. Instead, he overdosed himself
and when she came back, he was dead.
I knew him. I went to his funeral.
The Lyme Disease Memorial Page is
full of suicides who were told there was no further treatment for them.
And of people who died of it.
Glenn Edward Killion was going in and out of dementia when he died at the age of 36. He would pull himself up the stairs of his mothers home with his arms and hands, dragging his lower body. His Mom told me that.
He is dead. There are a lot of dead.
This is what waits if you have neuro Lyme- death and disability:
"Nobody dies from Lyme disease."
-Dr. James Olson, CDC, AP release, July 19, 1994.
People Who Have Died of Lyme Disease
Amanda Schmidt, 11
Glenn Edward Killion, 36
Kevin Ring, 37
David Lee Thomas, 18
Miss Christina Marie Lambeth, 19
Kathy Cavert, 51
Dr. John Drulle
Gayla Diane Keyes, 52
Everett 'Ed' Francis Ives, 53
Lynette McKinney, 64
Beverly Stanton, 53
Dr. William 'Bill' Nichols
Brian Pierson, 47
John W. McGrath, 75
Larry Dolan, 56
Dillon Jamison King, 37
Deiby Ashkenasy, 23
Beth Coen, 46
Richard Robley, 47
Simuel L. Danny Hogan
Elizabeth Burke Laubach Claflin
People Who Have Died of Lyme Disease
Kendall Wooten, 22
Ellen Agnes Loughlin, 56
Lori Lynn Widlund, 42
June Atkins, 77
Richard T. Mullin
Travis Wilson, 23
Professor Alasdair Crockett
Ellen Havican Watson, 20
Jesse Jonah Goldsmith Morgan, 35
Dr. Edward Stanley Arnold
Pat Pepper, 58
Gordon P. Grafton, Jr., 46
Dr. Michael G. Linebaugh
Christopher Peter Thomas, 46
Peter Edgar Hare
William Henry Boesche, 41
Robert Lee Runion, 77
Chester A. Mellen
Barry Horton, 55
David A. McHoul, 63
People Who Have Died of Lyme Disease
Jamie Forschner, 5
Dr. Jane Colfax
Sharon Ann Gross, 41
Joyce Marie Woods, 46
Jenny Umphress, 21
Scott Brazil, 50
David A. Butler, 73
Gilbert Thornton Perkins, 77
Theresa Jean Wells Clay, 45
Timothy Alan Selepec, 46
Catherine Klapak, 44
Dr. John Bleiweiss
Martha Bradley, 68
Gayle R. Hogan, 66
Larry Bennett, 50
#29 Dec 9, 2007
Do we really want children
not to have Dr. Jones?
Jim Sazani, 59:
Riding Horses in Heaven
2003: Jim Sazani, 59, died fighting complications from Lyme
April 18, 2003
Man fights Lyme disease to end
By Emily Slater
Up to his last hour, a local horseman remained hopeful he would beat the disease that crippled his legs, but not his spirit.
Jim Sazani, 59, died fighting complications from Lyme disease Saturday at Lompoc Hospital.
A memorial mass to celebrate his life was held Wednesday at Queen of Angels Catholic Church in Lompoc.
Inurnment was at Lompoc Evergreen Cemetery.
"He never gave up," said Judi Sazani, Jim's wife of 38 years. "He was hopeful he would get through; there was always something going on in life that kept him alive."
Jim once predicted he would fight to the end.
In an Adobe Press interview last July, he said he was far from giving up.
"When they take me, I will be kicking and screaming," he said.
The pain, however, became too much for Jim to bear.
Jim spent three weeks in the intensive care unit before his death, during which time doctors had to resuscitate him. Jim finally reached a point where he said, "No more," according to Judi.
"He got weaker and weaker and couldn't hold on any more," she said.
The process of his degeneration started a few years ago. The engineer began falling 10 times a day and eventually landed in a wheelchair.
He traced his muscle-wasting to a tick bite in 1998.
"He was miserable. He was trapped inside his body and he couldn't get out," Judi explained.
Now, she believes her husband is riding horses in heaven.
Jim bred and trained driving horses at Sazana Rosa Saddlebred Farm in Nipomo for 18 years - his passion.
After Lyme disease confined Jim to a wheelchair, the view of his ranch haunted him.
"I would rather move than look outside and see everything I can't do," Sazani said. "That's torture for me."
The Sazanis sold their Nipomo ranch last summer and moved to Lompoc. There, Judi received support from family members.
An independent man, Sazani was forced to rely on others for his daily survival.
"I'm like taking care of a 170-pound baby," he once said.
Although he required assistance, Jim more than rewarded his caretakers, according to friends and family.
"He influenced a lot of people and he loved working with children. He was a pretty special guy," Judi said.
Friend Ida Berry once said, "If you need someone to talk to, he's the one."
Jim was born Sept. 5, 1943, in New York. He attended Texas A&M University and later served at Vandenberg Air Force Base with the Air Force. During his time in the service, he decided to settle on the Central Coast, where he raised his family. Jim worked as an engineer for 33 years. He was also active in youth sports programs and coached everything from basketball, baseball and football to girl's softball. He was an avid scuba diver, fisherman, English sports car fanatic, history buff and, above all, a dedicated horseman. Memorial contributions, in lieu of flowers, may be made in Jim Sazani's name to the Lyme Disease Association, Inc., P.O. Box 1438, Jackson, N.J. 08527. April 18, 2003 © Copyright 2001 Pulitzer Central Coast Newspapers.
#30 Dec 9, 2007
This little girl was responsive to IV Rocephin. This was back when Rocephin was still on patent and very expensive. Her insurance company refused her parents & doctor.
A 7 YEAR-OLD FAIRFIELD COUNTY, CONNECTICUT CHILD
Connecticut Girl, Seven Years Old VIII International Conference on Lyme Borreliosis and other Emerging Tick-borne Diseases, Munich, Germany June 25,1999
FATAL PROGRESSIVE ENCEPHALITIS FOLLOWING AN UNTREATED DEER TICK ATTACHMENT ON A 7 YEAR-OLD FAIRFIELD COUNTY, CONNECTICUT CHILD.
Liegner KB & Jones CR. Private Practices, Armonk, NY & Hamden, CT, USA.
An engorged deer tick was removed from the right aspect of the neck of a 6 year old Fairfield County, Connecticut girl March 1995.
Parental request for prophylactic antibiotic treatment was refused by the child's physician. No eruption occurred at the tick bite site.
Summer 1995 flu-like symptoms and conjunctivitis developed and October 1995, headache, stiff neck, and sleep disturbance.
CT scans and MRIs of the brain, initially normal, demonstrated evolution of cerebral atrophy and periventricular white matter disease.
June 1996 the patient demonstrated arthritis involving hands, wrists, ankles, knees, and hips, was experiencing frequent seizures and was unable to walk, speak, respond to verbal commands, or feed herself.
Paired Lyme ELISAs in CSF and serum 7/96 were negative, but Lyme IgG immunoblot in serum disclosed the presence of 30, 41, 66, & 93 kiloDalton bands as well as 60 kDa band.
Treatment with intravenous ceftriaxone initially resulted in worsened seizure activity and treatment was changed to cefotaxime.
Arthritis resolved within one month of starting antibiotics.
A short course of doxycycline was given to cover the possibility of co-infection with ehrlichia.
During six months of treatment with intravenous cephalosporins seizures, which had remained poorly tractable despite intensive oral anticonvulsant therapy, diminished and became readily controllable with lower dosage of anticonvulsants.
The patient became able to walk, vocalize in simple sentences, feed herself, and use a swing set but remained severely neurologically impaired with significant brain injury evident on brain MRI and CT scan.
Antibiotic therapy was stopped 12/3/96.
Seizures reoccurred within one week of cessation of antibiotics and became increasingly difficult to manage despite continuation of anticonvulsant therapy. While in a tertiary care hospital her condition deteriorated and she died 1/30/97.
An autopsy was performed.
#31 Dec 9, 2007
Sorry, above, she was responsive to IV Cefotaxime. This woman, Shirley Forsman, was responsive to IV Rocephin but the same as with the IV Cefotaxime above her insurance company also would not approve further antibiotics EVEN WITH FAMILY AND PHYSICIAN REQUEST and IMPROVEMENT. Just like CT Girl, 7 years old, she had dementia & seizures and died when abx were stopped.
February 6, 1930 - November 9, 1999
Shirley Forsman was mis-diagnosed with Alzheimer's disease for 9 years before she died of Lyme disease in Pine County, Minnesota.
Many thanks to Lyme Alliance for allowing this excerpt-written by Tom Grier, from their newsletter:
"Shirley Forsman, RN, had a history of Lyme disease at age 59 and was treated with two weeks of Doxycycline. It was about two years later that Shirley was diagnosed with early progressive Alzheimer's disorder and her health steadily and quite rapidly declined. Within a few short years, Shirley needed complete around the clock care that was provided by her daughter, Katie Harp. Shirley was no longer able to walk, talk or perform daily functions such as dressing, having conversations or controlling her bodily functions.
"Always suspecting that her mother's mutli-system problems were caused by unresolved Lyme disease, Katie fought for years to have her tested and treated. Her requests were always met with resistance until she found a young Bemidji internist who was willing to do a trial of IV Rocephin just to see if the patient responded. Amazingly, the patient responded favorably and almost immediately.
After having been nearly completely non-responsive to any outside stimuli for over two years, Shirley was now beginning to recognize family members. She could form sentences that were a few words long and was now standing and walking short distances. In fact, the physician was now recommending physical therapy and a walker.
The most dramatic change was perhaps the change in the frequency and severity of Shirley's seizures. Grand mal seizures could be expected almost every week and they were often violent enough to throw her out of bed. The nightly thrashing and lashing about in her bed came to an abrupt stop shortly after antibiotics were introduced. In the end, Shirley was going as long as two months without any major seizures or bed thrashing. Her muscle twitches in her face were completely gone.
Upon seeing this change in Shirley's health, the attending doctor changed the diagnosis from Alzheimer's to neurological Lyme disease. However, shortly after switching Shirley from her IV Rocephin to a combination of orals, her health began to decline. After a series of seizures, Shirley died at age 69."
Her death certificate lists Cause of Death as: seizure disorder as a complication of Lyme disease.
#32 Dec 7, 2009
I believe one of the people you listed as having died from Lyme disease actually committed suicide. Dr John Bleiweiss was accused on malpractice and took his own life
#33 Dec 7, 2009
I see the mother of all class action lawsuits coming. It may not be for several years. This is not unlike the tuskegee experiment.
The CDC and IDSA are putting a lot of resources into covering their butts because they know what will happen when the truth becomes main stream.
I hope I live long enough to see Lyme disease validated and given proper treatment. Not so sure I will though. Just diagnosed through Igenex. I have neurolyme and I believe it's killing me.
I have an appointment with a LLMD after the new year. I will have to pay for treatment out of pocket. I know my insurance company will not pay for proper treatment. It's my only chance to live.
#34 Dec 8, 2009
I want to put my two cents in even if I'm late....I tested CDC positive for Lyme disease. You want to know how bad the system is at treating Lyme? Well, I tested CDC positive twice through LabCorp, a CDC approved laboratory and was still told by an IDSA physician that he didn't trust LabCorp and would not treat me according to their tests. It wouldn't matter what lab you used or who you went through. The system had predetermined to ignore you because those in control have no conscience and no morals. I hate to be in their shoes when their lives are over and they reap the rewards of their actions along with every other cowardly physician who denies chronic Lyme.
#35 Dec 8, 2009
True but this was after seven years of having been attacked by the system for treating Lyme patients. He was in financial ruin. In my opinion, you can credit his death to the medical establishment as well. They are responsible for his death. This fine doctor could have quit treating Lyme long ago and made all the money he needed to provide for his family. Instead he chose to treat an illness that no one else would. He chose to stand up for what is right. Sometimes when you stand up for things that are right, you pay for it, and he did. He is far more courageous than the physicians hiding behind the shadows. I know of many physicians who gave out antibiotics without seeing the patient first. It's not uncommon. So a malpractice suit means nothing to me since it may be based on the most ridiculous of complaints and it can be brought regardless of whether the patient was harmed and even when the patient was helped. This country has gone haywire.
#36 Dec 26, 2009
Such a sad state when claimed experts ignore what is evident. Dr. Jones and all the other lyme doctors are the experts in the lyme disease debate. I am wondering why the other so called experts that have allowed people to become a growing list of people who have died because of lyme disease are not being sued. This debate has just begun to heat up and I believe the citizens of this country will be astonished to know the depth of how much deception has been cast.
#37 May 12, 2010
Do you know of any Lyme specialist physicians in Santa Cruz or Monterey County?
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