Re: Re: NY Newsday: A Diagnostic Muddle/ Stony Brook

[Guest guest]

I know what you mean about Stoney Brook. I went to

see the so called lyme specialist there last year when

I was very sick with lyme (still am unfortuately).

All he did was argue with me the whole time. He told

me to get on with my life and to stop focusing on lyme

disease. I said thats kind of hard when I have

symptoms every day that remind me. He said that I

should rest & it takes atleast 1 year for the nervous

system to repair itself. Then in the next sentance he

told me to go back to work and to stop focusing on

lyme. I was so sick and had just stopped working

because I just couldnt do it anymore. Well, its been

a little over a year and I got worse after being off

of antibiotics, not better. This place just made me

so mad. Take care, Kim S.

--- Worldcom33@... wrote:

> I really think that Mrs. coyle and everybody else at

> Stony Brook

> University should just shut up! They are very inept

> money grubbing

> researchers who are simply in the pockets of the

> insurance companies.

> I live in Suffolk, Long Island. I even went to Stony

> Brook. I went to

> them for treatment and they made me feel like an

> idiot.

> I had a SPECT scan done there. They said every

> normal. I then had one

> done at Columbia. They found serious Hypo perfusion

> and damage. If

> you are so good Stony Brook, How do you explain

> that? You dont treat

> very ill patients. You are a bunch of phonies who

> are allowing the

> insurance companies to ruin good doctors. So just

> shut up until you

> come clean and say what you know to be true, not

> what the

> establishment wants to here.

> I am so mad!!

> p.s. DO not go to the local infectious disease

> doctor in Stony Brook

> area either. He is a bigger money grubbing loser.

> world

>

>

>

>

>

> >

> > June 26, 2001

> >

> >

>

http://www.newsday.com/coverage/current/discovery/tuesday/nd4073.htm

> >

> > A Diagnostic Muddle

> > Confirming ALS or chronic neurologic Lyme disease

> separately is hard

> > enough; now, controversial theories suggest a link

> > by Ridgely Ochs Staff Writer

> >

> > ONE MORNING LATE in 1993, Pat Pepper, then 48 and

> living in Coconut

> Grove,

> > Fla., was on her way to work when she got into her

> car and couldn't

> turn

> > the ignition; her right hand simply didn't have

> the strength.

> Scared, she

> > made an appointment immediately with her doctor.

> >

> > Within a year she was diagnosed with amyotrophic

> lateral sclerosis,

> > commonly known as Lou Gehrig's disease. ALS is a

> fatal disease that

> leads

> > to degeneration of the brain's motor neurons,

> causing progressive

> muscle

> > weakness.

> >

> > The cause is unknown; there is no cure, and

> treatments are short-

> term and

> > fairly ineffective. Three to five years is the

> average time of

> survival.

> >

> > But Pepper is still alive eight years later. And

> the reason, she

> strongly

> > believes, is that she didn't actually have ALS.

> >

> > Pepper believes she has chronic neurologic Lyme

> disease, caused by

> the

> > tick-borne bacterium Borrelia burgdorferi, which

> had infected her

> brain

> > and produced ALS-like symptoms. The diagnosis is a

> controversial

> one, as

> > was her treatment: She was on antibiotics for nine

> months and now

> gets a

> > booster injection of antibiotics once a month. The

> antibiotics kept

> her

> > alive, she says, and although her recovery " is

> very slow, very

> tricky, "

> > she says she is improving and regaining lost

> muscle mass.

> >

> > Bolstered by Internet sites containing stories

> like Pepper's, a

> growing

> > number of ALS patients are asking to be tested and

> treated for Lyme

> > disease in the hopes that they, too, can elude a

> diagnosis that is

> in

> > essence a death sentence.

> >

> > And some doctors, who admit they don't know what,

> if any,

> connection there

> > might be between the two diseases, are willing to

> treat these

> patients for

> > chronic, neurologic Lyme using long-term

> antibiotics-primarily

> because

> > there are so few other options for ALS patients.

> >

> > The use of long-term antibiotics-sometimes

> spreading over years-to

> treat

> > chronic, neurologic Lyme disease is in itself a

> deeply

> controversial issue

> > that has balkanized Lyme researchers, doctors and

> patients. (The

> > Infectious Diseases Society of America recommends

> no more than four

> weeks

> > of antibiotics.) Long-term treatment has also led

> to investigations

> by

> > state medical oversight boards and the loss of

> several doctors'

> licenses.

> > Consequently, some doctors are fearful of

> discussing treatments

> publicly.

> > And some patients fear losing access to the

> doctors treating them

> or even

> > insurance coverage for treatments they see as

> their only hope.

> >

> > Pepper's doctor, Dr. ph Burrascano of East

> Hampton, an

> internist who

> > does subscribe to long-term antibiotic treatment

> for chronic

> neurologic

> > Lyme and who is under investigation by New York

> State's Office of

> > Professional Medical Conduct, ascribes Pepper's

> survival to " sheer

> grit

> > and determination, " as well as to the treatment.

> Burrascano, who

> has an

> > avid and loyal following among Lyme disease

> patients, thinks Pepper

> has

> > both Lyme disease and ALS. And he believes there

> is some elusive

> > connection between the two " that is driving me

> nuts. " Dr.

> Liegner,

> > of Armonk in Westchester County, also specializes

> in treating Lyme

> disease

> > and believes there is some as yet unknown

> connection between the

> diseases.

> >

> > Although ALS is relatively rare, striking about

> 5,000 Americans a

> year,

> > Liegner says he has seen 14 ALS patients in the

> past 10 years who

> also

> > tested positive for Lyme. " That's a lot for one

> person's practice, "

> he

> > said.

> >

> > Liegner suspects Lyme may play a role in

> triggering some cases of

> ALS. But

> > he has seen that antibiotics are not a magic

> bullet. Antibiotics

> appeared

> > to work for only two of the 14 patients, Liegner

> said.

> >

> > " For the remainder, antibiotic therapy did not

> seem to ameliorate

> the MND

> > [motor-neuron disease, another name for ALS],

> which was progressive

>

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__________________________________________________

[Guest guest]

My experience at Stony Brook was horrible! They wouldn't give me abx

until I underwent all of their neurological torture tests...even though

I had a reactive WB. I was treated like a lab rat, and they even botched

the LP. They shouldn't be allowed to treat us they way they do....

Joan LI NY