Xyrem for Fibromyalgia? NO, NO, NO

[Guest guest]

Thanks Molly!

There are lot of things that can be done for FM! . . .

I'm proof of that! . . . One thing require staying

away from some of the medications prescribed for FM!

Rogene

Note: forwarded message attached.

Hi Rogene, Ilena, and Dr. Kolb,

I saw this posted in one of the forums, which is understandable since

so many of us have fibromyalgia and autoimmune illnesses with

accompanying pain and insomnia.

However, it alarmed me - for good reason. Can you help get the word

out? I am considering posting something on the fibromyalgia forum, as

well. I am also going to write the National Fibromyalgia Association.

It burns me up that so many doctors prescribe drugs that do not help

us, but aggravate depression and often cause the very problem for which

they are prescribed. I don't know what 'studies' there were on this,

but I question them. What is particularly alarming is that some

'holistic doctors' tout this as 'natural' and 'safe'. It is NOT.

This is the article:

Narcolepsy Drug Relieves Pain and Improves Sleep.

www.immunesupport.com/lib...fm/ID/6835

17 November 2005

CONTACT:

National Fibromyalgia Association

Orange, Calif---November 17, 2005 - The National Fibromyalgia

Association (NFA) today announced that a recent study on the narcolepsy

drug Xyrem® (sodium oxybate), significantly reduces pain and improves

sleep in people with fibromyalgia.

The data from an eight-week study will be presented today at the

annual meeting of the American College of Rheumatology in San Diego.

" These results are very exciting because—for the first time—we have

results that provide evidence that a product which improves the quality

of sleep during the night also has a dramatic effect on reducing pain, "

said the study’s lead researcher, I. Jon , M.D., Ph.D. associate

professor of medicine at the University of Texas Health Science Center

in San and a member of the NFA's Medical Advisory Board. " Both

pain and loss of sleep are significant issues faced by patients

suffering from fibromyalgia syndrome. "

Fibromyalgia (FM) is a complex chronic pain illness that can lead to

significant patient disability. The fact that there is no known cause

or cure for fibromyalgia challenges patients and healthcare

professionals alike. It is estimated that FM affects approximately six

to eight million Americans and 5% of the world's population. Patients

with fibromyalgia suffer from a variety of symptoms ranging from

stiffness, muscle spasms and body wide pain, fatigue and severe sleep

disturbances.

“This study will provide significant hope for patients searching for

ways to effectively manage the chronic pain of this severe disorder,”

said Lynne Matallana, president and founder of the National

Fibromyalgia Association. " The NFA is very excited to support research

that examines new treatment options for fibromyalgia. "

Xyrem, marketed by Orphan Medical, Inc., a subsidiary of Jazz

Pharmaceuticals, was approved by the U.S. Food and Drug Administration

(FDA) in October 2002 as the first and only treatment for cataplexy

(sudden loss of muscle tone) in patients with narcolepsy.

MY RESPONSE:

Re: Narcolepsy Drug Relieves Pain and Improves Sleep

Oh NO NO NO

Xyrem is extremely expensive (on the order of what MS medications

cost) and is in the most controlled drug category there is. You can't

even buy it in a pharmacy - they deliver it to your door. I took

Xyrem over a year ago and it is HORRIBLE. The " holistic " doc was NUTS

to prescribe it to me. My other docs said it was bad news too. That

'holistic doc' also prescribed oxycodone for me, which was also bad

news.

XYREM is VERY addictive, VERY dangerous and it jolts you awake every 2

hours. It is GHB, which used to be over the counter until it was

abused. I was so alarmed at the drug's effects that I googled it and

found a woman who nationally lectures on drug addiction and drugs

particularly dangeorus - XYREM is one of them.

XYREM did NOT improve my pain. Instead of helping with sleep, it

further disrupts sleep pattern.

I would not recommend this to anyone!! I think the only one that

benefits is the pharma. It costs a fortune and it is dangerous.

XYREM is the patented name for GHB.

This is the woman I spoke with over a year ago:

Trinka Porrata; Project GHB, Former LAPD narcotics detective - Trinka

Porrata works all over the world as a private consultant about various

drug issues. She provides instruction, legislative support, and expert

testimony about GHB, ketamine, flunitrazepam, LSD and MDMA,

drug-facilitated sexual assaults and the rave phenomenon. Porrata is

President of the Board of Directors of Project GHB, a non-profit

organization dedicated to providing information about the dangers of

GHB. Porrata retired from the Los Angeles Police Department narcotics

division in 1999. She was part of the first group of field certified

females in the LAPD Academy in 1973. Porrata has a B.S. degree in

Police Administration and Public Safety and Journalism from Michigan

State.

------------------

www.ghbkills.com/prod02.htm

[Guest guest]

You and me both, Rogene! Stay away from the fibro drugs and clean up the

diet and amazing things can happen.

Kenda

> Thanks Molly!

>

> There are lot of things that can be done for FM! . . .

> I'm proof of that! . . . One thing require staying

> away from some of the medications prescribed for FM!

>

> Rogene

>

>

> Note: forwarded message attached.

>

>

> Opinions expressed are NOT meant to take the place of advice given by licensed

> health care professionals. Consult your physician or licensed health care

> professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

> Find out what the facts are, and make your own decisions about how to live a

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