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Re: I'd like to hear from someone whose child had Lyme and was also diagnosed as Autistic!

Re: I'd like to hear from someone whose child had Lyme and was also diagnosed as Autistic!

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Posted by Sarah E.L.Weiss on October 03, 2000 at 23:41:21:

In Reply to: Re: I'd like to hear from someone whose child had Lyme and was also diagnosed as Autistic! posted by M.A. on October 02, 2000 at 15:12:54:

Hey Nancy)*!!*))*!

I responded to a message that was posted by you on sci.med.diseases.lyme. My daughter could easily have been diagnosed as autistic. LUCKILY, in a really weird way, I was having parallel symptoms and caught on it was LYme. Otehrwise, I could have been diagnosed with MS and she with autism or JRA, etc. My duaghter regressed when she was infected. She receded and this other child was there. Not her. Finally she is doing great and the disease is part of her, not all of her anymore. I believe, from our experience, that there are many, many children out there diagnosed with autism that is really Lyme disease.
My daughter's symptoms hvae all (except for chills actually) gone away with treatment. SHe is back to the baby she was. Her sweetness is back. She had become very tempestuous and aggressive instead of pure sweetness as she was before. Her memory and concentration and attnetion span got really bad. She would lie facedown for hours, non-responsive. She, as with me, developed chronic arthritis and she would not walk for days on end. Now she is running & laughing again. Lyme can present 100% identically to autism. I hope you get your daughter treated. Time is important. The main indicator of prognosis is length of time infected pre-treatment. My duaghter is still sick. She is only 3 and has been sick now for over 2 YEARS.
She may NEVER be 100%. I pray for it every day.
I am going to close this letter by enclosing an article on antibiotics and autism that I found absolutely tragic to read. It confirmed what I believe about much of what is labeled autistic.
I think it is such a shame that we don't have a better centralized data system in this country- it would save lives.

Best WIshes to You & Your Child!!!

-
Sarah Weiss
Aptos, California
**************************************************
Autism-antibiotic study sparks concern
July 18, 2000
Web posted at: 9:54 AM EDT (1354 GMT)


WASHINGTON (AP) -- First, parents clamored for the hormone
secretin in hopes it would help their autistic children. Put to
the test, however, secretin is proving disappointing.

Now a new theory is triggering desperate parents' interest --
and this time the stakes are higher because it could spur misuse of the nation's most precious antibiotic, vancomycin.

An Illinois mother persuaded scientists to try a bizarre-
sounding experiment, testing whether vancomycin might help her
son's severe autism. To their surprise, little Andrew Bolte got
better.

Dr. Richard Sandler of Rush Children's Hospital in Chicago was
skeptical of Ellen Bolte's theory that a neurotoxin-producing
intestinal infection was behind some of her son's symptoms.

He administered the antibiotic anyway. Andrew "was not cured, but all of a sudden he started saying words, became toilet-
trained," Sandler recalled. "I found that very intriguing. It's not supposed to happen."

So Sandler treated 11 autistic children who, like about a third
of children with this serious brain disorder, also suffer
painful gastrointestinal problems. Neuropsychological testing
concluded that 10 children improved, he reports in this month's
Journal of Child Neurology -- but only for a while.

And that's the problem: Andrew and the others worsened again
after just a few months. Yet already parents are calling doctors about vancomycin. That's worrisome because overuse of
vancomycin, considered the best weapon against the problem of
antibiotic-resistant infections, will spur germs to become
impervious to it.

"It is a danger," said Sandler, who has quit using vancomycin, calling it inappropriate until more research proves if it is a
real clue or a false lead.

Another Chicagoan, Dr. Michael Chez, plans to compare vancomycin to a dummy drug this fall, important because simple attention
during medical research markedly helps autistic children, the so- called "placebo effect." (Send an e-mail to rushstudy@aol.com for study information.)

Like other autism experts, Johns Hopkins University neurologist
Dr. Andrew Zimmerman is bracing for families' calls. "It's
heartbreaking, because you know they really want answers," yet the study is far too weak to back antibiotic use, he said.

Still, it's "provocative," Zimmerman said, because scientists are scrutinizing whether bowel problems are caused by or worsen
autistic symptoms, or are a coincidental side effect of the
terrible brain disorder.

More than 400,000 Americans have autism, characterized by
profound social withdrawal, inability to communicate, repetitive behavior and sometimes aggression. No one knows what causes it,
although much research suggests something goes wrong during
critical fetal brain development.

Several thousand children have taken secretin, an intestinal
hormone, after a mother said one dose brought her son out of
autistic isolation. But in scientific studies, secretin so far
has proved no better than a dummy injection.

Intense behavior therapy is autism's only proven treatment. But
Andrew Bolte was so aggressive the therapy didn't stand a
chance, his mother said. He screamed for hours. He even chewed
drywall from the walls. Complicating matters were severe
diarrhea and other gastrointestinal problems.

Bolte blames antibiotics prescribed for fluid in Andrew's ears
shortly before he became autistic at 19 months. Her unproven
theory: those drugs killed Andrew's normal gut-protective
bacteria, allowing an intestinal infection that can produce
nerve-killing toxins, which entered his brain. Vancomycin, she
thought, could kill that infection.

Thirty-six doctors scoffed. After all, autism typically appears
between ages 14 and 22 months, and no sufferers have ever been
found with neurotoxic infections.

Sandler called it "highly improbable," too, but he tried because Andrew, by now 3, was miserable. Two months later, Andrew
was "very calm," allowed Bolte to hug him and finally followed verbal commands.

Aggression and other symptoms soon returned. But Bolte believes
vancomycin eased his bowel problem enough to open a window for
behavior therapy, saying Andrew retained his language
improvements.

Even she cautions against demanding vancomycin, however.
Instead, she is raising money for bacterial research.




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