News like this gives good LLMD's a bad name. See the bottom of the article. I read this article in the Star Ledger.
Posted by Lymetoo (Member # 743) on :
oh great. That's all we need.
I hope these people get the treatment they need.
Posted by lou (Member # 81) on :
Wish we knew the whole story.
Posted by cantgiveupyet (Member # 8165) on :
This was on NBC10 in Philadelphia, PA tonite.
I had to turn away.they showed the Dr house and the animals they brought out.
the dogs were all matted really bad.....it was terrible....stuff just hanging off the dogs...ive never seen anything like it before!!!
They interviewed a patient treated for lyme and he said she WAS good for the lyme disease but that was it.
Posted by Lymetoo (Member # 743) on :
Does the dr have Lyme too?
Posted by shazdancer (Member # 1436) on :
Good point, tutu. And do we know if this was an ILADS doc?
Shaz
Posted by Ann-OH (Member # 2020) on :
Dr. Demarco was very involved as a consultant on the lawsuit against the Lyme vaccine and was quoted in many national articles about that.
She is not listed on the ILADS board or advisors.
I would wonder if she has Lyme disease too. Her housemate might be very sick as well. They have to be sick in some way to try to pull that kind of deal - though I wait to hear the whole story.
So sad! Ann - OH
Posted by lou (Member # 81) on :
My advice would be to determine whether your treatment is being handled appropriately. If so, stay there. If not, leave.
You may have to leave ultimately if the charge sticks. But it isn't all that easy to find lyme docs, as the government is trying to destroy them all, one way or another. Too many shipwrecked lymies trying to get into too few boats. If there isn't some change soon, none of us will be getting any treatment anywhere, and will be forced to treat ourselves by sneaking over the border for drugs. This is obscene.
And I would like to point out that in this country a person is supposed to be considered innocent until proved guilty. These days with lyme persecutions, you also have to know whether it is an honest trial, and not a kangaroo court, or intentional harrassment.
Posted by lou (Member # 81) on :
The idea of a stem cell transplant is not all that outrageous an idea for late stage lyme, if you believe that the case is not treatable by abx and is autoimmune in nature, rather than infectious, or a combination of the two. I am not sure what to think on this issue, except that if it still has an infectious component, the results might not be as described below for lupus, which is said to be auto-immune. Of course, some lymies have been misdiagnosed with lupus too.
-------------------------------------------------
Breakthrough In Autoimmune Disease Research
Stem Cell Research Gives New Hope To Patients
ABC News April 10, 2006
Before seeking out Dr. Richard Burt of Northwestern Memorial Hospital, Kathy Hammons could barely care for her children as a result of the effects of lupus, an autoimmune disease in which the body attacks itself.
She had been on oxygen for two years, was constantly fatigued, and was overweight from the steroids used to control her disease.
"I would say before this option, they [lupus patients] hit a brick wall," Burt said. "They had nothing more, no further treatments."
Burt's pioneering research, however, offered a new option. His breakthrough procedure uses a patient's stem cells to treat extremely severe cases of lupus and other autoimmune diseases.
"We bring the patient in, and we give them chemo to destroy their immune system," Burt said. "And then right after the chemotherapy, we infuse the stems cells to make a brand-new immune system."
Since undergoing Burt's stem cell procedure, Hammons' lupus has been in remission. She's off the oxygen, and she's lost 120 pounds.
"The thing I enjoy most is just being a mom again," Hammons said. "It's the best."
Hammons was part of Burt's initial stem cell transplant study conducted on 50 lupus patients. After five years, half are disease-free. Now, his work is giving hope to those suffering from other autoimmune diseases.
One of those people is Bethany Pappalardo.
A little more than a year ago, Pappalardo could not walk around the block and had no idea whether she would be able to get out of bed on any given morning.
"I woke up one morning, and my legs were numb," Pappalardo said. "By the end of the day, I was numb from the neck down."
Pappalardo was diagnosed with multiple sclerosis when she was 18 years old, and, like most MS sufferers, her symptoms manifested at any time.
"The most frustrating thing for me was I was in my freshman year in college," Pappalardo said. "I was away from home, and I had to learn to give myself injections."
Last year, Pappalardo contacted Burt.
"I thought maybe this can be different," Pappalardo said. "Maybe this can go away. Maybe I can be a typical 25-year-old."
She underwent the stem cell treatment and said the most difficult part was losing her hair. The results so far have made it worth it.
"Since the procedure, she's had not only no more attacks but she had marked improvements and she's functioning normally," Burt said.
Burt's treatment could prove to be the first effective new treatment for lupus and other autoimmune diseases in nearly 40 years.
"I never use the word 'cure,' I say it's promising," Burt said. "If I use the word 'cure,' God will humble me."
Posted by Biting Back (Member # 6018) on :
Yes, this LLMD did/does have lyme. Remember, innocent until proven guilty and don't forget, the media thrives on sensationalism.
Posted by treepatrol (Member # 4117) on :
Nothin surpizes me comin outa philly look at our wonderous Gov
Posted by FAIR ISSUE (Member # 13290) on :
MY NAME IS DOCTOR CHARLENE DEMARCO. i WAS SPONSOR FOR A STEM CELL LINE GROWN AT THE UNIVERSITY OF ILLINOIS AT CHICAGO. I WAS TOLD I NEEDED TO PROVIDE AN ind OR INNOVATIVE NEW DRUG APPLICATION FOR THE PROCEDURE. SINCE I HAVE NEVER RECEIVED FEDERAL FUNDING AND SINCE THIS WAS GROWN FROM A MISCARRIED FETUS THERE WERE NO MORAL ISSUES. THE CELLS GREW TO BILLIONS OF NEURAL STEM CELLS AND ONCE INJECTED INTO PASRALYZED MICE THE STEM CELLS MIGRATED TO THE AREA OF DAMNAGE AND PRODUCED NEW NEURONS AND GLIAL CELLS. THE MOUSE WALKED. IN REALITY I DID NOT NEED FDA APPROVAL AND BECAUSE THEYT STALLED THE UNNEEDED APPROVAL THE PATIENT DIED BEFORE IT COULD BE DONE. THE CELLS ARE STILL ALIVE AND WELL IN CHICAGO BUT CONTRARY TO THE DONORS WISHES THAT THEY BE USED ON ANOTHER ALS PATIENT THE UINIVERSITY LIED TO ME ANSD SAID THE CELLS WERE DEAD AND NEVER USED THEM. THE BRAIN HAS NO IMMUNO RESPONSE SO IMMUNOSUPPRESSIVE DRUGS WERE NOT NEEDED. THE FDA JUST WAITED UNTIL THE POOR GUY DIED. AND ON TOP OF IT THEY LIED TO ME BECAUSE BY THEIR OWN RULES IF A PATIENT HAS AN UNTREATABLE DISEASE A DOCTOR CAN TRY SOMETHING INNOVATIVE WITH JUST A PHONE CALL TO THE FDA. A DOCTOR IN MICH. USED STEM CELLS TO REPAIR A BADLY INJURED HEART OF A YOUNFG BOY AND HE RECOVERED COMPLETELY. ONCE IT WAS ANNOUNCED THE FDA CALLED THE DOCTOR AND TOLD HIM TO STOP. THE USE OF DONATWED MISCARRIED FETUSES IS ETRHICAL AND IT WORKS. BUT THE DRUG COMPANIES WOULD NOT MAKE A LOT OF MOPNEY AND THE FDA WOULD NOT GET ENORMOUS USER FDEES. I WAS TRIED IN A FAIR COURT BY A FAIR JURY BUT THE FDA LIED AND NO ONE, NOT EVEN MATELI NE VITALIE, TOLD THE TRUTH. THE FDA OCI PLOTTED THIS AND THE NJ FEDERAL STATE PROSECUTOR TRAVWELED TO LOUISIANA TO MAKE SURE THINGS WOULD GO THE WAY THE FDA VIA THE OCI AND THE JUSTICE DEPARTMENT WANTED. THEY ARE MAKING SURE NO ONE IS TREATED. THE TRUITH IS HERE FOR THE TAKING. I WILL SPEAK THE TRUITH UNTIL I AM SILENCED. DR DEMARCO
Posted by Ann-OH (Member # 2020) on :
Thank you for explaining all this, Dr. D. I am still a bit confused by the Chicago, Louisana, Philadelphia connectons, but it seems you were trying to do the right thing.
I hope you can appeal and get it all sorted out.
Ann - OH
Posted by Lymetoo (Member # 743) on :
Do most drs misspell words? OH...yeah, they probably do!!
Posted by CaliforniaLyme (Member # 7136) on :
Dr. D- WELCOME*)!*)!*)! !)*!*)!*)!*!)!*)!*)!)
From what I had researched your treatments that you were proposing made sense- I think the issue the way the press put it was about the money and they crucified you guys. I am sorry it happened this way. I am very glad you are here.
Welcome SO much- Sincerely,
Posted by map1131 (Member # 2022) on :
Interesting!! The first post url isn't working now. Cal, will you post a couple urls you've found worth reading?
Thanks, Pam
Posted by CaliforniaLyme (Member # 7136) on :
Stem Cells Heal a Broken Heart Kristen Philipkoski 03.07.03 | 2:00 AM
Dimitri poses for a family photo following the news conference at Beaumont Hospital. View Slideshow Sixteen-year-old Dimitri Bonnville had already been accidentally shot in the heart with a nail gun while doing home repair, undergone open-heart surgery and suffered a massive heart attack, when doctors told his parents he needed a heart transplant.
The doctors did offer an alternative: Bonnville could become the first human to receive experimental stem-cell therapy to revive his damaged heart tissue. They went ahead with the procedure, the results of which could turn the stem-cell debate on its head.
Doctors at William Beaumont Hospital in Royal Oak, Michigan, used a procedure that, if successful, could eliminate some of the controversy surrounding the medical use of embryonic stem cells, as well as the practice of therapeutic cloning.
"We're very excited because we think that there's already been substantial recovery of cardiac function," said William O'Neill, Beaumont's chief of cardiology, regarding Bonnville's progress.
The teenager's therapy began Feb. 17 with a four-day regimen of a drug that stimulated the production of stem cells in his blood. On Feb. 21, doctors harvested Bonnville's stem cells. Using a heart catheter, they transplanted the stem cells into the artery that supplies blood to the front of the heart.
He was discharged about a week later and is now recuperating at home. His doctors say they have never seen a recovery like his.
Watch Dimitri's stem-cell surgery. "We did cardiac MRI studies and we found that basically the entire front wall of his heart was dead (before the procedure)," O'Neill said. "Many other patients we have observed like this have never seen any improvement."
The stem cells -- master cells that can grow into almost any type of tissue in the body -- used to treat Bonnville were taken from his own blood, which eliminated the possibility of rejection by his immune system.
Many scientists believe that embryonic stem cells -- usually taken from 4-day-old embryos that are often obtained from leftover stores at in-vitro fertilization clinics -- are the most powerful and flexible of all the cells.
On Aug. 9, 2001, President Bush declared that scientists who receive federal research funds could work only with the 60 or so embryonic stem-cell lines that had been created before that day. In reality, however, the number of usable lines turned out to be fewer than 10.
However, the Beaumont procedure doesn't require embryonic stem cells at all, because the necessary cells were taken from Bonnville's own blood. The experimental therapy also eliminates the need for another intensely debated technique: therapeutic cloning.
AUDIO Hear Dr. Cindy Grines describe the stem-cell procedure. The assumption that therapeutic cloning is key to the success of embryonic stem-cell therapies (none of which has yet been shown to work) has permeated both the stem-cell and cloning debates.
By creating a cloned embryo of a patient and extracting stem cells from it, scientists believe they might get around the body's tendency to reject new cells as an immune response.
Since Bonnville's own cells were used in the procedure, rejection isn't a concern, O'Neill said.
"They're his own cells, highly concentrated, and we put them into the damaged area," he said. "We wouldn't anticipate anything different than we would normally." ********************************************
Friday, March 31, 2006 Associated Press
A southern New Jersey doctor took money from Lou Gehrig's disease patients by getting them to pay as much as $35,000 for a stem-cell treatment that she could not -- and did not -- perform, according to a federal indictment unsealed yesterday.
Charlene DeMarco of Egg Harbor City and her assistant and housemate, Elizabeth Copperman, were arrested yesterday and charged with 11 counts of conspiracy, mail fraud, wire fraud and money laundering for acts they are accused of committing between 2002 and 2004.
According to an indictment, DeMarco, 44, and Copperman, 38, told patients that DeMarco could help them by injecting stem cells into their brains. But the patients would need to raise money for the treatment first.
Five alleged victims were listed in the indictment, but only by initials. Four of them lived in Louisiana.
According to the indictment, three of them sent DeMarco a total of more than $75,000 for the treatments, which they never received.
Another victim was told the treatment would require a $35,000 fee, according to the indictment.
"The conduct alleged in this indictment is contemptible and represents a shocking example of greed and a total disregard for historic principles of humane medical treatment," U.S. Attorney Christopher J. Christie said in a written statement.
DeMarco is known for her work on Lyme disease and in 2003 was appointed by Gov. James E. McGreevey to the Governor's Lyme Disease Advisory Council.
Lou Gehrig's disease, formally known as amyotrophic lateral sclerosis, is a degenerative disease of the nervous system that causes muscle weakness and eventual paralysis. There is no known cure. Life expectancy for an ALS patient averages two to five years from time of diagnosis.
Baseball star Lou Gehrig first brought national and international attention to the disease in 1939 when he abruptly retired from baseball after being diagnosed with ALS.
Posted by Itsy_bitsyone (Member # 12635) on :
The real Dr. Demarco was on Gov. Corzine's Lyme task force in NJ for , I believe, Atlantic County.
As I believe I posted before concerning the letter to Corzine many people were writing (to answer the IDSA's letter to him), that's probably the worst part of the whole thing. It really loosens the credibility of the Lyme community when something like this happens. Its an embarrassment.
Here's the lesson:
There will be always be bad apples in the bunch....no matter what you do. Some people are going to see diseases like Lyme or ALS as BIG money makers. Just because someone has Dr. before their name doesn't make them incapable of running a scam. Especially when the neediest, most desperate people are willing to pay anything, to try anything to get relief or cure.
Just a note regarding the post from above...looks like something that belongs on the usenet group. The poster gets 3 points for imagination, and 2 points for ludicracy. They get -5, however, for not using spell check.
((PS. Would you like stem cells from a miscarried fetus? I don't know about you, but because most miscarriages are idiopathic, sometimes due to developmental reasons beyond our comprehension, do you want cells that didn't foster proper development for the little person they belonged to? I miscarried due to Lyme...would you be comfortable getting stem cells from a Lyme-Infected Fetus?? Just some things to think about))
Posted by CaliforniaLyme (Member # 7136) on :
Itsy, I have reason to believe that this is the real Dr. D.
Many doctors don't have perfect spelling-
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by CaliforniaLyme: Itsy, I have reason to believe that this is the real Dr. D.
Like what?
Posted by CaliforniaLyme (Member # 7136) on :
Like I posted her post on another list with a little bit o' a query with it as to whether it was really she and got an email from someone who knows her (an LLMD) saying it is she indeed- that's why-!!
AND regarding doctors who mis-spell things- my cousin is a doctor and can't spell worth @!*!^! SO I know that for a fact*)!!!!!!!!!!!!!!!!!!!!!! *)!*)!!!!!!!!!!!!!!!!!!!!!!!!!
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