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» LymeNet Flash » Questions and Discussion » Medical Questions » CFS/fibro

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Author Topic: CFS/fibro
kam
Honored Contributor (10K+ posts)
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I received this in my in box. I have only been able to scan it this am but wanted to pass it on before my teflon mind forgets about it.

I have tried the provigil and I have thought lately I would like to give it a try again.

I worked sometimes in the past and other times it did not.

Not debating labels here. Just trying to find something to help us while we are trying to overcome lyme disease.

Therapy Targets Cause of Chronic Fatigue ImmuneSupport.com

12-22-2004

By Linda Marsa, Special to The Los Angeles Times
Sufferers of chronic fatigue syndrome are plagued with flu-like symptoms, joint and muscle aches, a loss of mental acuity and such profound lethargy that even routine activities can be exhausting.

But the debilitating disorder has no known cause or specific treatment.

An experimental therapy may change this bleak prognosis by lifting the mental fog and increasing physical stamina. For some patients, this could mean a return to normal existence.

"I'm hopeful this drug will meaningfully improve people's quality of life," says Dr. Nancy G. Klimas, an immunologist and chronic fatigue expert at the University of Miami School of Medicine in Florida. "These patients are often desperately ill."

Chronic fatigue afflicts an estimated 500,000 to 1 million Americans, more than half of whom are women. Symptoms can include headaches, forgetfulness, impaired concentration, dizziness, sore throat, fever, muscle weakness, night sweats and an inability to achieve restful sleep.

Although experts are unsure what triggers the symptoms, they suspect that a chronically hyperactive immune system is to blame. The immune system appears to saturate the body with killer cells and proteins that normally are dispatched only when repelling a bacterial or viral invasion.

Doctors use a variety of therapies, such as antidepressants and pain relievers, to relieve symptoms, but the experimental treatment Ampligen could become the first that targets the illness' underlying cause.

The injectable drug is composed of synthetic genetic material that is similar to a virus.

"The body interprets this drug as a virus and reacts accordingly," says Dr. William A. Carter, a co-inventor of Ampligen and chief executive of Hemispherx Biopharma Inc. in Philadelphia, which makes the drug.

Exposure to the synthetic virus prompts the body's immune system to produce interferons, which are proteins that combat viruses and dampen an overactive immune response.

Recent test results were encouraging. In a 40-week study, 234 people with severe chronic fatigue were given either twice-weekly injections of Ampligen or a dummy shot. The treated patients experienced a 21% improvement on a treadmill test (a measure of exercise capacity), compared with about 5% in the placebo group.

In addition, the Ampligen group reported feeling sharper mentally; about 80% stopped or reduced their use of other medications, and a handful were able to go back to work.

Although the overall findings show a modest benefit, "these are people who normally can't do anything strenuous without getting sick, and the majority of patients experienced an improvement in their most difficult-to-reverse symptoms," says Dr. Lucinda Bateman, a chronic fatigue specialist in Salt Lake City who helped test Ampligen.

The company hopes to have Ampligen on the market in 2006.

"I'm excited but cautious," says Klimas. "This drug is quite beneficial for some patients, and the next step is to figure out how to predict which ones this can truly help."

Also in the works

Experimental tests of two drugs approved to treat other conditions also show promise in treating chronic fatigue syndrome.

The wakefulness agent Provigil, a treatment for narcolepsy and excessive daytime sleepiness, decreased lethargy in a small study of chronic fatigue patients. Procrit, which is used to boost the volume of oxygen-carrying red blood cells in patients undergoing chemotherapy, is also being studied for its potential ability to combat fatigue in chronic fatigue patients.

Source: The Los Angeles Times. (c) The Los Angeles Times, all rights reserved.

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Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
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Things that help with lyme is not off topic.

On the other hand, a co worker has been going to the chiro every two weeks since I have known her.

I have known her since 2000. She was dx with CFS/fibro. She will not see a lyme specialist because she will have to pay out of pocket.

Her chiro is being paid by a workmen's comp claim she received years ago.

She also was approved for massages through the workmens' comp claim and gets those every two weeks.

Although, she is functioning higher than I am...she is still not able to work and is limited on what she can do each day.

Just wanted to post this for those who feel they may benefit from chiro and are not able to at this time.

It would be nice to include it in our treatment.


Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
suvvyb
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I loathed provigil...I think part of the problem is that they started me on it when my neuro symptoms were first materializing, though, (back before anyone had a clue what was wrong with me), and it felt like everything around me was vibrating. Not a very natural awake feeling...but I guess it served its purpose.


And I'd just like to add in regards to the article...

"Although experts are unsure what triggers the symptoms, they suspect that a chronically hyperactive immune system is to blame. The immune system appears to saturate the body with killer cells and proteins that normally are dispatched only when repelling a bacterial or viral invasion."

Hmm...anyone else scratching their head


Posts: 25 | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
zipzip
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this is the first positive thing i have heard about ampligen in a long time. i thought they had given up on that drug.

as the last poster idenitified "i wonder what they have?" is a fitting question, but i don't know if every CFS/FIBRO is tbd.

could be myscoplasma, steatlh virus, etc.... doesn't manner.

They haven't figured out what GWI is per se but they now admit that it was from exposure to noxious chemicals (an etiology).

anyhow Ampligen is something to sell those who believe that diagosis anyway, and a bonus if it does relieve some pain and suffering.

the perxplexing part to me is that the immune system is not overactive in CFS, as so many CFS people claim, otherwise it would be an autoimmune condition (in which the immune system is attacking itself).

on the contrary the immune system is supppressed for consistently fighting off an uknown pathogen.

i don't know anything about the pharmokenetics of Ampligen but it seems as if they are getting the intended results, in the pilot study, but for the wrong reasons.

if the body is reacting to the new virus which Ampligen is mimicking then the body is creating new interferons to attack it, something that an immunocompromised system would, hopefully, do.

an overactive immunesystem wouldn't even recognize the virus at all. it needs to be down regulated with steroids, plaquenil, etc.

anyhow too late to extrapolate...

[This message has been edited by zipzip (edited 23 December 2004).]


Posts: 795 | From nyc | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
   

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