CaliforniaLyme
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First one nice patient letter, THEN... ZEMEL, co-authoer on articles with Steere, etc!!! He is a Lyme treating pediatrician in CT who toes IDSA line. Comments anyone? Only 5 so far, two mine. I am trying to be as reasonable as possible in my replies... (don't scream, don't scream, don't scream! stay calm, Sarah!!) ****************************************** Response To 'Lyme Doctor Sanctioned' December 23, 2007
It causes me great pain to see my beloved pediatrician sanctioned by the Connecticut Medical Examining Board [Page 1, Dec. 19, "Lyme Doctor Sanctioned"]. I do not have enough facts to offer an objective opinion on the actions of the board. However, I am qualified to offer an opinion on the character of Dr. Charles Ray Jones.
Dr. Jones is an outstanding person and doctor. He has devoted his entire life to helping and serving people. He is the kind of person society should honor as he continues to practice medicine at 81 years old.
Dr. Jones is a thinking man. He makes decisions based on what is best for the patient. As a 37-year-old public school teacher, I often remember the actions and words of Dr. Jones in my work. It is my honor and privilege to know Dr. Jones and I am so happy to thank him for his lifetime of good work.
Patrick J. Stratton Newington *******************************************ZEMEL!
Some politicians feed at the table of opportunity. Rep. Jason Bartlett of Bethel, in responding to sanctions placed against Dr. Jones for his violation of standards of medical care, wants to protect those physicians who disregard these standards, especially in the treatment of Lyme disease.
Who will be protecting the citizens of Connecticut if Mr. Bartlett has his way? Who will speak up for:
*The 9-year-old boy from Stratford with leukemia who was mistakenly treated for Lyme disease.
*The depressed adult misdiagnosed as having Lyme disease, and placed on long-term antibiotics by a Stamford psychiatrist in place of standard antidepressant medication. That adult later committed suicide.
*The New Jersey woman who died of an infection related to her intravenous catheter, while receiving inappropriately long-term antibiotics
*The 8-year-old boy from Groton who had to endure gall bladder surgery because of a complication of his long-term IV therapy for Lyme.
The list goes on. The safeguards that are currently in place are designed to protect the public. These should not be weakened by politicians trying to satisfy their constituents.
-------------------- 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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bettyg
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Showing posts 1 - 5; i broke up some longer paragraphs and bolded some strong points to use on rebuttal feedback letters for others still wanting to write them! bettyg
Anne Reply � |Report Abuse |#2 7 hrs ago
Dr. Zemel: Who will speak up for the 100's of thousands of sick and tortured Lyme patients across this country. Mistakes are always made in medicine; if you have made no mistakes, you are not practicing medicine. The 4 cases you mention in this article are cases where some conscientious physician was trying to help.
Lyme disease is extremely destructive, extremely painful, and, now, extremely politicized by some of the medical community, corporate health care companies, pharmaceutical companies, sycophant politicians, self-centered, fearful doctors.
I know the answer: Excellent, intensive research into all aspects of Lyme disease and now; development of excellent, reliable tests for the bacteria; development of excellent treatment options.
You whiney physicians sitting on your butts, doing the "safe" thing by not treating patients or doing the research are becoming repulsive to me. You lack good value and are only thinkig of the bottomline: money, money, money. Please either help the situation or go away or best, get out of medicine.
How stupid that doctors such as yourself would say "no long-term antibiotics" when they don't know of any other treatment options.
All medical treatment has risks and side effects, even taking simple aspirin. Lyme disease and, yes, chronic Lyme disease has become endemic across this nation. We need help not politics!
Dr. Zemel, what health care company do you have stock in or of which one are you a board member?
It is for darn sure that you, Dr. Zemel, will not be protecting the citizens of Connecticut. Only brave, caring doctors like Dr. Jones will.
Joke United States Reply � |#3 6 hrs ago
Zemel, you make me sick
Beatrice M Szantyr MD Eddington, ME Reply � #4 2 hrs ago
I would ask Dr. Zemel who will protect the 15 year old boy who lived in a wheel chair after treatment for Lyme was stopped after the arbitrary month of therapy, until he and his parents found their way to a physician willing to investigate further and use antibiotic treatment for his Lyme disease that allowed him to regain the ability to walk and conduct a wonderful life;
the 48 year old nurse, world class quilter, whose life had shrunk to a point of inability to work, inability to run her own home, diagnosed as having fibromyalgia despite 2 known tick attachments and subsequent rashes at the onset of the illness, but allowed to languish until a physician dared to investigate more fully and treat her Lyme disease until she recovered much of her life;
the physician who was confined to a wheel chair with ALS as a diagnosis who recovered and returned to practice in the care of a physician who dared to look further and uncover the tick-borne illnesses he had and treat them with extended courses of antibiotics;
the physician who was told to do no more tests but learn to live with the devastating fatigue that followed the expanding rash and flu-like symptoms in summer, only months later diagnosed with Lyme, and then left to languish by well known Lyme disease authorities after the standard courses of antibiotics, until finding a physician willing to investigate and treat further allowing the resumption of a life of contribution
the college student allowed to languish for almost a year with the diagnosis of mononucleosis despite the lack of antibodies against the known causative viruses until a physician dared to look further and prescribe antibiotics for the Lyme disease that went undiagnosed, thereby restoring her to a functional life, though never back to her former energy;
and the list goes on and on.
The vigilence and diligence that medical practice requires is critical. The current testing and diagnostic criteria are so flawed and proposed standards so insufficient that they do not allow for these many untreated or improperly treated individuals to seek legal recourse because authorities may simply deny that they were affected by this illness, or state that prior rendered treatments meet the standard of care.
The deck is stacked against innovative thinking and patients who do not conform to a preconceived idea of this illness.
Let the physician who has never made a mistake cast the first stone.
Until that happens, let us each and all practice with vigilence and diligence in the best interests of the patients we serve.
Sarah O Santa Cruz, CA Reply � |#5 2 hrs ago
Dr. Zemel, I am glad you are speaking for them- I agree that those are tragic cases and ones in which Lyme doctors may have not done their best.
All doctors, even you, make mistakes. I believe you ARE coming from a good place in your heart and from concern for people.
Because these tragic things HAVE happened in the name of Lyme treatment.
There is no New Jersey woman who died of an infected catheter to my knowledge though, there is a woman from Iowa, Geri Fosseen, whose post mortem was done by doctors from New Jersey- a difference. She was from Iowa.
I web The Lyme Disease Memorial Page.
There are many more people who have died from this disease, Lyme disease, than have died of treatment complications or were misdiagnosed.
I agree that tragic cases occur- and I am glad that you are speaking your truth Dr. Zemel.
But there is MUCH more tragedy that we, Lyme patients, see, in our patient community. Much more death than there should be. Many, many more suicides than there should be.
Dr. Jones saved my daughter from a diagnosis of autism- she is 100% normal and healthy today and has been for years. She had Babesiosis which was her main problem, not Lyme, and he caught that. Our doctor out here had never even heard of Babesiosis but she was repeatedly blood positive when he suggested testing for it.
Even as well-meant as I believe you are, Dr. Zemel, your letter clearly shows that he is being held up for the sins which are NOT his own. To be made an example of. To me he has been an example of goodness. He helped our local doctor help my daughter and make her well again.
Dr. Jones has been treating the worst of those with pediatric Lyme for years and years- he has a specialized knowledge base, reference points you & your brethren do not have. I wish instead of trying to obliterate those with differing opinions you & the IDSA would simply state yours, instead of trying to destroy people.
Dr. Jones saved my daughter from severe pain. You didn't. I never heard of you- but Dr. Jones has helped enough children that his name became known to me in California. And he helped!! Free of charge. He helped my doctor help my daughter- she is a happy, healthy child today- thanks to him.
Sincerely, Sarah Olson Aptos, CA
which 10 years back they told us there was no Lyme here, then in 2003 they discovered it WAS here, as we, the patients already knew,
it is the #1 hotspot in CA, with 17.8% in adult ticks & many more times that in nymphs Sarah O Santa Cruz, CA Reply � |#6 1 hr ago
Postscript: Yes, I just checked, the person alluded to by Dr. Zemel, Geri Fosseen, lived in New York until she was 16 and then resided in Northern California and then in Iowa until she died. Not New Jersey, ever.
And writing of Lyme patients commiting suicide, it is the leading cause of death for people with Lyme disease, Dr. Zemel.
Due in no small part to their inability to get good care because physicians are afraid to treat the disease because they are afraid of their licenses getting removed.
When I got sick and began to have clear neurological involvement, a movement disorder in my left hand- chorea with athetosis- my rheumatologist who had endorsed another rheumies diagnosis of Lyme and then Post Lyme Syndrome told me, "I know you have Lyme disease but I can't help you." She encouraged me to seek help from a LLMD but refused to help me because she was AFRAID of treating Lyme disease.
I had to go $50,000 out of pocket for 9 months of IV Rocephin which restored me to normal from being bedbound with progressive weakness and progressive encephalopathy by that time.
When I began to run a Lyme hotline out of my home phone and to run a support group, it was right when Dr. Burrascano was up on charges in New York, and a doctor in San Jose broke down in front of a patient I sent him who had an EM rash after tick bite. He literally wept as he told her, "I can't treat you, I'm so sorry, I don't want to lose my license."
That same Rheumie who told me she knew I had Lyme but couldn't treat me even gave OTHER Lyme patients the well-known LLMD in SFs phone number and told them the same thing.
Other doctors locally don't diagnose their Lyme patients with Lyme on paper but as "unknown bacterial infection" because they are afraid of being targeted as Lyme doctors.
We have lost the only Lyme doctor in North Carolina this year, Dr. Jospeh Jemsek. We have lost many doctors, including, since you wrote of suicide, Dr. Zemel, doctors with Lyme who commited suicide.
Like Dr. John Bleiweiss committed suicide after they ran a smear article about him, he was facing losing his license.
Like Dr. Bill Nichols who committed suicide. Other doctors simply died of the disease itself- like so many people do- many more people than have died of treatment complications.
Sincerely, Sarah O. Aptos, CA *******************
very powerful letters, i;'ll be back tonight to add my thoughts; taking quality time for hubby/me now! betty
posted
Posted mine too--unfortunately my lymebrain got involved..What a PIA.
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bettyg
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posts 6 - 24 i broke up some longer paragraphs and bolded some strong points to use on rebuttal feedback letters for others still wanting to write them! bettyg
GoWest Las Vegas, NV Reply � |#7 10 hrs ago
I have questions for Dr. Jemel.
Zemel *The 9-year-old boy from Stratford with leukemia who was mistakenly treated for Lyme disease.
Question How did you determine he did not have Lyme disease? How long did it take before the leukemia was diagnosed? Did he recover from the leukemia?
Zemel *The depressed adult misdiagnosed as having Lyme disease, and placed on long-term antibiotics by a Stamford psychiatrist in place of standard antidepressant medication. That adult later committed suicide.
Question What are the rates of suicide for adults on antidepressants? Did the patient decline antidepressants as many patients do? How was the diagnosis of Lyme disease made in this case? Do you grasp how despressing chronic, severe illness with brain confusion, joint pain, extreme fatigue can be?
Zemel *The New Jersey woman who died of an infection related to her intravenous catheter, while receiving inappropriately long-term antibiotics
Question Why do you assume long-term antibiotics were inappropriate? How would you decide if a patient were still infected with borrelia given that most infected do not realize it until weeks to years after infection? Would you do a brain biopsy to diagnosis infection in the CNS? Enquiring minds want to know.
Zemel *The 8-year-old boy from Groton who had to endure gall bladder surgery because of a complication of his long-term IV therapy for Lyme.
Question Are gall bladder problems common when a person has had long-term antibiotics? Which antibiotics would lead to this, and how often would we expect to see this effect? Are you assuming this child did not have an ongoing infection with borrelia? How do you know that?
Zemel The list goes on. The safeguards that are currently in place are designed to protect the public. These should not be weakened by politicians trying to satisfy their constituents.
Question Is there an accurate test for late stage brain infection with borrelia Burgdorferi? How about the various strains of bartonella? What about lonestari infections found in the south? Do ticks know which part of the country they are from, and that they are not allowed to hop on a bird and move? Do they know not to board airplanes from Europe bound for the United States?
Thanks for any wisdom you can impart. Paula Carnes Longterm Lyme patient from South Caronlina - probably infected for 20 years with classic rash in 1993 following work in the backyard garden. *********
Merlyn Mencke Vantage, WA Reply � |#8 8 hrs ago
Who is going to speak up for people like myself and thousands others, who have chronic lyme, or as the so called doctors of the IDSA say have chronic post lyme syndrome.
The "syndrome" name is just a way of denying treatment of any kind.
We know, from effects of treatment, that we have active infection. It does not matter what these alleged doctors think.
Some of us who are close to recovering with alternative treatments are going to find the energy and clarity of mind to retaliate.
These doctors who have abused their power with shoddy studies should beware-they just might end up being very embarrassed. **********
Stanford Tampa, FL Reply � |#9 8 hrs ago
Dr. Zamel,
I am a PhD in biomedical field for over 20 years and also a Lyme sufferer.
* From my knowledge and experience, I am sure that chronic infection of Lyme disease does exist, and
* long term of antibiotics does help Lyme patients.
You and others wrote the IDSA Lyme guideline as the Bible of treating Lyme disease as you were the God knowing everything, and concluded that chronic Lyme disease doesn't exist and long term of antibiotics doesn't help patients.
There is no research proved that is true and thus you just simply made that conclusion is totally wrong and the guideline should be retracted.
If you are really want to help Lyme patients and want to know the truth instead of following politicians, you should go to www.lymenet.org for at least one month to see:
1. Dr. Jones is a hero among Lyme patients;
2.Chronic infection of Lyme disease does exist; and
3.Long term of antibiotics does help Lyme patients.
Don't assume you know everything, the Lymenuts know much more than you, although you are trying to determine their fate. Stanford D. PhD ****************
Janis Centreville, VA Reply � |#10 7 hrs ago
I have heard many practitioners speak about tick-borne infections since three in my family all have multiple infections.
Here is the heart of the matter for a parent. Words spoken by the head of the Lyme Research center in New York.
"Chronic lyme disease is a disease that can cause fatigue like that of congestive heart failure, pain like that of post surgery, and daily cognitive challenges."
Think about that description!
And when my one son was sent to an Infectious Disease doctor, this doctor looked at him and said, "Nobody likes a whiner."
This remark to my 19 year old son who throughout his school years had only missed 3-4 days each year.
This to my son who had removed an embedded tick the morning after dragging our Christmas tree from the side of our house to the curb.
This to my son who had watched the quality of life change for his older brother due to lyme.
Can I sue this ID doctor who felt this son was adequately treated with 4 weeks of antibiotics
This son has battled three different infections over the past 30 months.
Dr. Jones is one of the saints. Think about that description. **********
``During 2003-- 2005, CDC received reports of 64,382 Lyme disease cases from 46 states and the District of Columbia..........
With approximately 20,000 new cases reported each year, Lyme disease is the most common vector-borne disease in the United States.''
1. Dr. Zemel has pointed out 3.5 cases of problems in diagnosing and treating tick borne diseases. NOTE: I left out 0.5 since it was stated ``innapropriately long-term antibiotics''. This is a debatable point, and so was removed.
Those 3.5 cases are approximately 0.0000075% of the 200,00+ cases of lyme in the last ten years.
Assume the incidence list is longer? Assume 100 problems, whether diagnosis, or treatment, then the rate becomes 0.000075. Unremarkable.
2. Dr. Jones has treated approximately 10,000 children in his career, many of whom displayed serious neurological impairment, beyond having aching knees and fever. Of these 4 cases mentioned by Dr. Zemel, how many were Dr. Jones' patients? None?
J. Groopman, M.D.,(``How Doctors Think) states the physician diagnosis error rate is between 40-60%. JAMA stated there was 23.5% error rate, based on autopsy results, but qualified that by stating only 9% affected the outcome.
Compare these three error rate figures, please:
Dr. Jones 0, JAMA reports 9-23%, Dr. Groopman reports 40-60%.
Facts, not rhetoric. Dr. Jones looks superlative.
Also, Dr. Zemel failed to mention that the children are all well, now. Correct diagnosis, and correct treatment led to a new life for them.
4. I.V. Infection rates were 1-2% in the following hospital study:
Assume the IV use in neurological lyme is 10% of affected population. 10%x200,000 = 20,000 possible tick borne disease IV treatments in ten years.
1-2% of 20,000= 200-400 possible IV adverse event cases in ten years for lyme patients.
Dr. Zemel has listed one extreme case, as compared to 200-400 possible extreme cases.
In summary, facts, not rhetoric will improve IDSA scientific standing. Leave the rhetoric to Forbes magazine. (another post to follow)....
Daphnea Atlanta, GA Reply � #12 7 hrs ago
When IDSA :
proposes a ``voluntary'' guideline, which ignores and cannot explain over 10,000 research articles that weaken their position (including their own earlier research),
and proposes ``voluntary'' guidelines, which are used by medical boards to punish and threaten physicians who successfully use the CDC recommendation of clinical diagnosis,
and proposes ``voluntary'' guidelines which do not allow input from treating physicians,
and proposes ``voluntary'' guidelines which are based on only 2 weak studies, and only a few years of research, which only address the known northeastern strains of borellia, and which ignore the synergistic effect of co-infections.
and misuses and distorts probability statistics as if a 60% occurrance, p=<.05, is 100% occurrance,
and insults the medical background and abilities of specialists,
and relies on a first tier testing, ELISA, that is only 50% sensitive, guaranteeing 50% misdiagnois,
then IDSA guidelines have a problem, and it is affecting innocent lives, and the problem is being denied, and whitewashed with public rhetoric.
People's lives are being ruined by this denial, and luckily not mine since I used an ILADS doctor who used long term oral antibiotics. My gallbladder is just fine, thank you.
I do not believe IDSA is using these guidelines to protect the public. Their citations are strictly cherry picked, miniscule evidence based summaries. IDSA may be trying to be accurate, trying to be precise with their cherry picked evidence, but that assumes all knowledge has been revealed and published, and fits their theory, at this time, which we know is not true of any medical field.
The guidelines do not accomodate conflicting evidence, and thus their scientific endeavor ultimately will fail. Daphnea **********
Harold Roy Cotuit, MA Reply � |#13 7 hrs ago
Zemel cherry picks a few cases of misdiagnosis out of tens of thousands of accurately diagnosed chronic and successfully treated Lyme cases. His arguement is intellectual sloth bordering on calculated deception. *********************
Daphnea Atlanta, GA Reply � |#14 6 hrs ago
And who will speak up for the other 200,000+ lyme patients who have been misdiagnosed by a false negative ELISA?
And who will speak up for the 10x200,000=2,000,000 actual lyme cases as projected by the CDC? Not IDSA. Daphnea *********
Julia Chaplin, CT Reply � |#15 6 hrs ago
Gee, Dr. Zemel, who stood up for my son when you MISDIAGNOSED him and caused him years of needless suffering?
I'm sure the list of children you have failed to diagnose and treat Lyme Disease is FAR LONGER than a few people who MAY have been harmed from treatment.
How irresponsible of you to write a letter with these supposed "facts" thrown out there to mislead people, who will trust your word simply because you have "MD" after your name.
All medical treatments come with risk. With ANY treatment, there will always be a few rare cases where someone suffered a poor outcome. It is the benefit to risk ratio that matters. You know this.
And those of us with children who have been treated by you know that you are biased AGAINST Lyme disease, and that you overlook it when you shouldn't.
My son is just one of many whom have suffered at your hands, Dr. Zemel. You are the one who should be getting sanctioned.
I'll be Dr. Jones sleeps at night. Do you? *********************************
Julia Chaplin, CT Reply � #16 6 hrs ago
Shame on you, Dr. Zemel. Shame on you.
Let's see how you hold up when it is your turn in front of the medical review board.
Dr. Jones never harmed anyone, and that was not even alleged.
You harmed my son. And many others.
This letter you wrote just emphasizes that you are pushing your own agenda; to publish such a misleading letter, which could further mislead people.
Your day will come, Dr. Zemel. Your day will come. Are you ready? ********
Melissa K Chestnut Hill, MA Reply � #17 6 hrs ago
I just want to share my story.
I am a veterinary technician. I became severely ill one morning. I couldn't move. I went to my doctor and he ran a lot of tests, one of which was a Lyme Western Blot.
2 weeks later I was told I was positive IgM "acute" Lyme.
I was started on Doxy. Withing 10 days I ended up in the hospital. I got a PICC line and IV rocephin for 28 days.
The reason I am telling you this is because:
1. I never had a bite or rash that I noticed
2. Within 3 weeks was diagosed and on treatment
3. Treated for 6 weeks (4 of which were IV)
so can someone please tell me WHY AM I STILL SO SICK??
This all started with Lyme. I have had a fast diagnosis and 6 weeks of treatment which would be considered extended treatment by CDC standards, so why am I so sick that I am disabled at 29. Why do I have a fever of 101 every day?
I am living proof that the IDSA standard doesn't work on everyone!
I am somewhat "lucky" to test positive. Others do not or take years to get diagnosed.
This madness needs to stop!
Dr. Jones is an angel saving kids. Back off. **********************************
Meryl Nass MD Thorndike, ME Reply � |#18 5 hrs ago
Discussing the support given to Dr. Charles Ray Jones by Representative Bartlett of Bethel, Dr. Lawrence Zemel wrote, "Some politicians feed at the table of opportunity."
Reviewing the evidence, one wonders if it is not the other way around. It turns out that Dr. Zemel has filed charges against at least other doctor for treatment of Lyme infections. That doctor was exonerated in 1996.
In this month's Yankee Magazine, Dr. Zemel wrote,
"With the eventual loss of Dr. Jones, there will not be a void in physicians who treat pediatric Lyme disease in Connecticut. I know of several highly qualified, board-certified specialists in infectious disease and rheumatology, myself included, who will treat not only the acute infectious complications of the illness, but the noninfectious later symptoms as well."
It appears that Dr. Zemel is seeking to feed on the opportunity presented by the attack on Dr. Jones, by offering to take over the care of his patients! Meryl Nass, MD Bar Harbor, Maine ****************
Lymeblue Reply � |Report Abuse |#19 3 hrs ago
Zemel has a strange taste regarding mds who treat Lyme Disease..I'm wondering why....
He was involved against Dr Watsky, from Bristol, CT 1993 who used to treat Lyme also out of the box.....hmmmmmmm the common denominator in these two cases besides Zemel is that NO patients were complaining about Jones or Watsky, instead it is the medical board of CT in Jones case and the State of Connecticut's Department of Public Health in Watsky's case.
This investigation was initiated in 1993 based on a letter sent by Dr. Lawrence Zemel of the Newington's Children Hospital in CT.
Realy I'm wondering why haunting MDs that treat Lyme .....this is just amazing....THIS HAS TO STOP!
Dear: Medical Board of Connecticut and Department of Public Health of CT, with ALL DUE RESPECT, encouraging misdiagnosis and prescribing antidepressants together with painkillers WILL NOT make Lyme Disease EPIDEMIC decrease, but exponentially increase...2+2=4, guys you can change the math.....
Two girls bitten in Florida, misdiagnosed because "there is no Lyme in FL" and ELISA "-".....JOnes treated them succesfully. ***********************
flyfish Stamford, CT Reply � |#20 2 hrs ago
Zemel Long term antibiotics work for me and I would say I am 100 % better and living life just like before treatment. You have made many kids get sick and it is very sad that you still practice medicine. ***********************************
Stanford Tampa, FL Reply � #21 2 hrs ago
Dr. Zemel, Do you feel shamed as a Lyme doctor?
All of the 19 posts from Lyme patients have regarded you as a creep, but Dr. Jones as a hero.
Why there is no single person supporting you?
Do you still think you are the right doctor to treat Lyme patients?
Do you still think the IDSA Lyme treating guideline is the guideline loved by Lyme patients?
If not why you are still called Lyme doctor?
And the the guideline called Lyme treatment guideline? **************
Julia Chaplin, CT Reply � |#22 1 hr ago
In this month's Yankee Magazine, Dr. Zemel wrote,
"With the eventual loss of Dr. Jones, there will not be a void in physicians who treat pediatric Lyme disease in Connecticut. I know of several highly qualified, board-certified specialists in infectious disease and rheumatology, myself included, who will treat not only the acute infectious complications of the illness, but the noninfectious later symptoms as well."
Hmmmm, how can you POSSIBLY treat the "noninfectious later symptoms" when they are NOT "noninfectious later symptoms", but still LYME DISEASE???
If you have Lyme disease, and it doesn't get better in 4-6 weeks, why do you think it is now a "noninfectious post lyme" syndrome?
WHY ISN'T IT STILL LYME DISEASE?? DUH!!
If it WAS Lyme Disease, and it isn't better in YOUR time frame, you make up a fictitous syndrome to fit your views. That's just plain stupidity.
It was Lyme Disease, and it still is until it goes away. Why is that so hard to accept? There are MANY, MANY studies that prove this.
The fact that you publish this propaganda to further your position is just unconscionable, unprofessional, and corrupt . **************************
Jackie New York, NY Reply � |#23 1 hr ago
Grateful thanks for the many skillful and eloquent earlier comments re: Dr. Zemel's letter.
Dr. Zemel: I just cannot understand how you can cite a HANDFUL of legitimate cases of misdiagnosed Lyme or treatment complications, yet willfully IGNORE the VAST amount of suffering experienced by the THOUSANDS of people who were not properly diagnosed WITH Lyme disease until they had advanced disease!
Who are you to judge that MY suffering and losses are any less valid than that of the people on your list?
Do YOU know what it is like to be so miserable from an undiagnosed/misdiagnosed illness that you think, just give me cancer so I can die already?
Or that you make a mental inventory of options for ending life, JUST in case it gets that bad?.
Intervening between me and that level of despair, is my ILADS doctor, God bless him, who is returning me to health, and politicians like Rep. Bartlett, who seeks to protect my doctor's right to treat me per his clinical judgment without harassment.
If this case of now WELL children did not involve LYME DISEASE it would never have come before the medical board.
In your words, "The safeguards that are currently in place are designed to protect the public. These should not be weakened by politicians trying to satisfy their constituents."
No, Dr. Zemel, the safeguards that are currently in place are INADEQUATE to protect the public. They need to be strengthened to prevent harassment of Lyme doctors who defy the IDSA's mandate.
Further, we patients WILL hold accountable those who have willfully failed to diagnose and treat us, or obstructed our diagnosis and treatment. *************
Re Dr Zemel Not Chaplin, CT Reply � |#24 19 min ago
I am not surprised that Dr Zemel can quote 3-4 cases that people were treated for Lyme that actually had other medical issues, and possibly Lyme in addition.
The part that Dr Zemel is missing is that thousands- not 3 or 4 of the great residents of CT are after being failed by the medical community, primary care doctors, and hospitals;
such as Uconn Medical Center such as in my case--
people who are their whit's end continue to search for reasons why they are still ill and end up at physicians that diagnosis and treat Lyme Disease.
Unfortunately just as the primary care doctors miss diagnosis and treat patients, Lyme doctors do the same. We are all in fact human and do make mistakes.
Dr Zemel also does not note or admit that maybe these same individuals may have had other issues besides or in addition to lyme or co-infections.
Dr Zemmel- wake up and smell the ticks. We live in CT,. Ticks are everywhere, if you go outside you will meet them in person, and not on a white paper .
You are welcome to my house and spend an hour in the yard and you will be covered in ticks. You are welcome to take any takers with you and the disease that they carry.
Oh by the way, my son was evaluated by the great Dr Zemel TWICE and was sent home with nothing. Three years later we found out that our son had Babesia, which Dr Zemel MISSED !!!!!!
If not for our not settling for Dr Zemel's inadequate diagnosis and the compassion of another detailed & compassionate board certified Dr, our son is on his way to recovery . Best Regards, ************
wow, keep them coming; outstanding responses to EACH OF YOU! You are representing your children well.
seeing all these NEGATIVE FEEDBACK COMMENTS ON ZEMMEL, I SHOULD WOULD NOT TAKE MY CHILD THERE; I DON'T CARE HOW DESPARATE I MIGHT BECOME! NO WAY! Betty
posted
posts 25 - 31; i broke up some longer paragraphs and bolded some strong points to use on rebuttal feedback letters for others still wanting to write them! bettyg
Note: You will never learn any of this from reading the biased reporting of William Hathaway and the Hartford Courant. ***********************
Kemsoup Portland, OR Reply � |#26 20 hrs ago
Dr. Zemel et al,
And who helps those who live in daily hell (and die) because the medical establishment refuses to even acknowledge that they have a disease, be it chronic Lyme, post Lyme Syndrome or whatever it is chosen to be called?
There are hundreds of thousands of us whom elitist Lyme "experts" would just go away. The facts are few and far between that more harm has been done by treating these folk than by ignoring them. Many have gotten better or well and gone on to live productive lives. You don't have a corner on data at all.
I ask you, where would AIDS be today if the medical establishment had had its way in the early 1980's? Lyme disease is in the same position.
Don't throw us away because you want to save a buck while the problem only gets worse. We need help, not denial in the name of "safeguards."
You're not protecting the public while while evidence is building that this illness is real and needs treatment. Please start doing some homework before passing empirical judgments . Thank you. **************
LymeandMS Branford, CT Reply � |#27 18 hrs ago
I find Dr. Zemel's letter to be offensive and hope that AG Blumenthal will look into sanctioning him.
It appears that the mainstream medical community is only interested in 'treating' patients instead of 'curing' them.
I want to be cured and will pursue whatever treatments needed to make this happen!
Thank goodness that I have a great LLMD and have felt much better over the last 2 years.
If you do not have anything good to say, please do not say it Dr. Zemel . ***********************
lyme Reply � |#28 16 hrs ago
Dr. Zemel, you wrote "The depressed adult misdiagnosed as having Lyme disease, and placed on long-term antibiotics by a Stamford psychiatrist in place of standard antidepressant medication. That adult later committed suicide."
My adult son was psychotic, paranoid, depressed, having hallucinations. He was mentally ill. All of this caused from Lyme disease. He is well from long term antibiotic therpay. He has his life back!!
I would hate to think where he would be if he was treated for mental illness instead of Lyme disease.
Although Dr. Jones did not treat my son, he is treating my daughter. My daughter was diagnosed with Chronic Fatigue Syndrome before seeing Dr. Jones. My daughter is getting her life back. Thank you Dr. Jones.. our hero! His Lyme doctor saved his life!! *****************
Freethinker Woodlawn, IL Reply � |#29 15 hrs ago
Like so many others Dr. Zemel, your career as a Lyme Crook is nearing the end.
Your so called "Lyme Disease" is a Relapsing Fever and it doesn't belong in the Rumatology department as ARTHRITIS OF THE KNEE, as Alan Steere wants the world to believe.
That is why at the Dearborn Conference in 1994, Alan Steere proclaimed bands N31 and N34 were so "SPECIFIC" for testing for Lyme, it is left out of the ELISA standard. YALE Uni and Allen Barbour hold patents on the testing.
They made the bogus vaccine LYMERIX and went over and tested it on 250 unknowing Checkoslovakian children. They didn't even have the same "strain" as we do over here.
So how can you test for a strain that is not even there? When Lymerix was taken off the market, they actually had the BALLS to say it was a "Lack of Public Interest" and nobody wanted the vaccine. How stupid do you think we are?
You and your kind want to PROFIT off of "test kits" and keeping us all sick. Hummmm, i can just smell it:
"There will be NO BULL****TING around on Lyme Crook Indictment Day" and it's in the air.... Fa-la-la-la-la la la la la... **************
Sarah O Santa Cruz, CA Reply � |#30 14 hrs ago
Just a note on the IDSA way of treatment.
I had a tick bite (3 tick bites with fully engorged I Pacificus at Nisene Mark State Park), EM rash at one bite site, positive tests, and was diagnsoed Lyme (and was positive for Ehrlichiosis as well) by a local Rheumatologist.
After 30 days of Doxy I WAS almost well- but just ALMOST. I begged for one more week but that Rheumie told me anything left over after 30 days was Post Lyme Syndrome. Which he diagnosed me with.
I don't know *how* borrelia burgdorferi spirochtes learned to read treatment guidelines.
Anyway, he and my primary care physician and another Rheumie I began seeing instead of him let me DECLINE for a whole year. Because I was NOT some static presenation of autoimmune response.
I had progressive symptoms, which led the second Rheumie to rediagnose me AGAIN, along with all the new diagnsoes I had accumlated-
IBS, CFS, MCS, RLS, TMJ-
with "progressive multi-system neurological disease triggered by Post Lyme Syndrome".
A progressive multi-system neurological disease triggered by Post Lyme Syndrome.
They were LETTING me get WORSE. Just LETTING ME GET WORSE- for a whole YEAR of my LIFE.
My Primary care doc, when he saw how bad I was getting, because I could no longer WALK normally, and because I had a movement disorder in my HAND, and because I could no LONGER REMEMBER MY DAUGHTERS NAME at the age of 28, he apologized for listening to the IDSA Rheumie and offered me all the orals I wanted- but they no longer did ANYTHING because I was so sick.
They did NOTHING.
I did not KNOW help was out there, I was on online then, I had no IDEA there WERE LLMDs- Lyme Literate MDs, Lyme doctors. SO I just got worse for an entire YEAR of my life, in AGONY 24 hours a day, with progressive muscular weakness.
And thank GOD a friend found out about LLMDs, thank GOD I found an LLMD, because 9 months of IV Rocephin and I have gotten to live a NORMAL PAIN-FREE LIFE AGAIN for the last 7 YEARS.
The IDSA murders people with their guidelines which are written for the bottom line not for people.
In the last 7 years as a facilitator for the SC County TBD Support Group I have seen people diagnosed MS get out of wheelchairs.
A young Lymie I know who is lovely said once, "It's not a question of IF we'll win, but WHEN." Yes, the day WILL come.
"Truth is the daughter of time."
But Truth has not come soon enough for the thousands of people who have died of this VERY treatable, often incurable disease . Sincerely, Sarah O, Aptos, CA 17.8% in adult Ixodes Pacificus in my backyard ********************************************
Freethinker Woodlawn, IL Reply � Abuse |#31 5 hrs ago
posted
So maybe it's time to bring some murder charges against IDSA doctors like Zemel. A class action murder charge. Enough is enough.
Posts: 13116 | From San Francisco | Registered: May 2006
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A depressed woman committs suicide? If doctors wanted to assure this would never happen to a patient in their care they would do what MOST do when faced with a Chronic Lyme diagnosis.... abandon care! Try: a Chronic Lyme infected wife BEGGING you to promise to kill her if things get much worse...
An 8 year old "enduring" Gallbladder surgery? Unless there were complications... should not have been a lot to endure... but you already know that.... and versus the sequalae of untreated Chronic Lyme!!!??
One of the complications of a central venous catheter is death; WHATEVER it is being used to treat. If a few thousand CV caths are placed, a certain number will have complications and a few will die. Do a few thousand heart caths and a few will have complications and a a few will die BECAUSE of the heart cath. The ISSUE always is RISK/BENEFIT.
A pediatric patient misdiagnosed that had Leukemia? I dare say a significant portion of ALL chronically ill patients are misdiagnosed on the way to a proper and fully correct diagnosis. Try an average of 22(!) doctors and specialty contacts for the average NERUO-BORRELIOSIS pt. before finding a proper and fully correct diagnosis.
But I know, you already know ALL of the above DR. Zemel. Therefore WE BOTH KNOW your attack on Doctor Jones is Politically, not Medically motivated. Why the politics? Money? Prestige? Social Pressures? Jealousy? ONLY YOU know that Dr. Zemel...
Jim A "Lyme" caretaker.
Posts: 70 | From AZ | Registered: Sep 2007
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A depressed woman committs suicide? If doctors wanted to assure this would never happen to a patient in their care they would do what MOST do when faced with a Chronic Lyme diagnosis.... abandon care! Try: a Chronic Lyme infected wife BEGGING you to promise to kill her if things get much worse...
An 8 year old "enduring" Gallbladder surgery? Unless there were complications... should not have been a lot to endure... but you already know that.... and versus the sequalae of untreated Chronic Lyme!!!??
One of the complications of a central venous catheter is death; WHATEVER it is being used to treat. If a few thousand CV caths are placed, a certain number will have complications and a few will die. Do a few thousand heart caths and a few will have complications and a a few will die BECAUSE of the heart cath. The ISSUE always is RISK/BENEFIT.
A pediatric patient misdiagnosed that had Leukemia? I dare say a significant portion of ALL chronically ill patients are misdiagnosed on the way to a proper and fully correct diagnosis. Try an average of 22(!) doctors and specialty contacts for the average NERUO-BORRELIOSIS pt. before finding a proper and fully correct diagnosis.
But I know, you already know ALL of the above DR. Zemel. Therefore WE BOTH KNOW your attack on Doctor Jones is Politically, not Medically motivated. Why the politics? Money? Prestige? Social Pressures? Jealousy? ONLY YOU know that Dr. Zemel...
Jim A "Lyme" caretaker.
Posts: 70 | From AZ | Registered: Sep 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
December 26, 2007
Dear Yankee,
Imagine the audacity of a individual who feels it is acceptable to write a letter to Yankee Magazine in order to drum up business for himself and his medical colleagues at the expense of a well known, beloved and successful pediatrician who they have collectively tried to ruin both professionally and financially.
Combine that lunacy with the fact that some of these self-absorbed block heads who declare themselves willing and able to take on this trampled doctor's patients are already connected to a governmental investigation into illegal practices for possible fraud, anti-trust, monopolization and exclusionary conduct related directly to what they claim they are "highly qualified" to do.
My question- Would Larry Zemel (University of Connecticut School of Medicine, Farmington, CT) and his hand-picked cronies be more suited to be poster boys for the arrogant, the pompous or the narcissistic community?
One thing for certain- They shouldn't be allowed to treat "sick or symptomatic children" with acute infections or the aftermath that follows. That is the last thing the Lyme disease community needs right now.
please go to below website and post your comments on this direct link so your comments show up on the board. very well done! thanks for sharing here as well! they aren't on the site IF you tried to post them.
************************** posts 32 - 36; i broke up longer paragraphs and bolded where you see! bettyg
Dap111a Seymour, TN Reply � |#32 Yesterday
Dr. Zemel wrote:
``Some politicians feed at the table of opportunity. Rep. Jason Bartlett of Bethel, in responding to sanctions placed against Dr. Jones for his violation of standards of medical care, wants to protect those physicians who disregard these standards, especially in the treatment of Lyme disease.''
IDSA composes guidelines. Medical Boards set up their own arbitrary standard of care for their respective state.
Perhaps the IDSA guideline authors could contact the Medical Boards, if they have not done so already, to remind them that the IDSA guidelines are voluntary.
Afterall, IDSA states they are voluntary, and so should have nothing to fear, and have no reason to involve themselves in public displays of contempt for those who disagree on scientific grounds.
In regards to Representative Bartlett of Bethel, I would remind Dr. Zemel that as a State Representative, Rep. Bartlett's job is to protect the people and their rights, one of which is to allow them freedom of choice in medical care.
He is a public servant, and is serving his constituency. That is his job. I would hope that Rep. Bartlett is not insulted by Dr. Zemel's innuendo (``feeding at the table of opportunity), which implies a lack of integrity in motivation or purpose.
Those rights and freedoms of citizens are being denied when lyme treating physicians are hauled through medical board investigations that are time consuming for all, at times petty, and even sometimes involve baseless and possibly fraudulent charges, such as brought against Dr. Watsky ten years ago in Connecticut, at great expense to the taxpayers:
Images of ``pseudo-democratic'' elections in third world dictatorships, where there is only one name on the ballot, come to my mind when I see what IDSA guidelines authors and medical boards are doing.
As stated, the guidelines are voluntary, but in this lyme treatment ``election'', again, there is only one name on the ballot. There is no real choice for either physicians or patients. The only other choice is not to vote, or in this case, not to treat for, nor receive treatment of, the root cause.
In order to be sure there is a true choice, sometimes legislative action is necessary, in order to police the police.
I wish Rep. Bartlett much success in his endeavors which display his wisdom, intelligence, courage, and mature responsibility to the citizens of his state. In my opinion, IDSA and the medical board ``cant see the forest for the trees'', while Rep. Bartlett is seeing both the forest and the trees. Daphnea **************
Daphnea Seymour, TN Reply � |#33 Yesterday Corrected link from above posting is:
Robert Normand Scarsdale, NY Reply � |#35 11 hrs ago
No matter what opinions Dr. Zemel and the anti-Lyme group at the IDSA try to put forth as fact, the official fact is that there is no one standard of care for the treatment of Lyme, according to both the CDC and the State of Connecticut.
Joseph Goebbels, a Hitler aide, posited that if you tell lie often enough, it becomes the truth. The "big lie," as Goebbels dubbed it, is what Zemel and the IDSA are promulgating in regard to the treatment of Lyme. What is their goal?
They say they want to protect patients. Yet when thousands of patients testify that long-term antibiotics have alleviated their symptoms and even reversed terminal diagnoses given by doctors who would not even consider a Lyme diagnosis, the IDSA's response is "Your reality does not conform to our theory.
Don't take the antibiotics that are helping you. Suffer instead and take antidepressents so you can endure the pain."
What kind of doctors are these who would deny help to thousands of patients who say they been helped by a particular type of therapy?
It would be one thing if the IDSA were offering a competing therapy that had been equally effective.
That would be an honest debate. But the IDSA has nothing to offer. Yet it tells patients to abandon successful Lyme antibiotics and follow the IDSA's path to nowhere.
A particularly surreal aspect of the IDSA's position is that some of the same antibiotics the IDSA so vehemently opposes for the treatment of Lyme, a potentially debilitating and sometimes fatal disease, it has no problem approving for the treatment of acne, a cosmetic condition, sometimes for years at a time.
The IDSA has lied about every aspect of its position on Lyme Disease. It says that its guidelines are voluntary and then writes letters to governors and state legislators telling them that these guidelines should be the legal standard of care.
Dr. Eugene Shapiro recently sat in judgement of Dr. Jones as an impartial panel member during the recent medical board hearings against Dr. Jones, Yet Dr. Shapiro is a signatory to the IDSA guidelines and a known, long-time professional enemy of Dr. Jones.
The IDSA states that there are no respectable studies that indicate long-term antibiotics for Lyme, yet there are thousands of official, peer reviewed studies from around the world that do indicate antibiotics as a successfully treatment for Lyme.
Why is the IDSA so vehemently against the kind of treatment that has helped thousands of people with Lyme but will happily approve for an adolescent with pimples?
The answer lies outside of medicine and that's the point.
The issues are money, ego and power. If there were no personal gain involved, it would simply not be worth the effort to oppose a mainstream therapy that has worked well in treating Lyme and is used rouinely in treating many other conditions.
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posted
Zemel sounds like a real dope. He can't even get his facts straight. Lol.
By the way, Betty, could you please not "BOLD" so often because it hurts some of our eyes. Thank you so much.
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