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RE: Debbie - 17 months post tx

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Thanks for your replies. Guafenesio?? Sounds like a cough med?1 Ok , i am Drain Bramaged, but pls. explain? Thank you for you help. You take it easier...deb

>From: "pump boz"

>Reply- > >Subject: RE: [ ] Debbie - 17 months post tx >Date: Sat, 24 Jan 2004 21:23:00 -0600 > Learn how to choose, serve, and enjoy wine at Wine @ MSN.

check out guaifenesin

Take it easy... but take it.. Pump

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pump boz wrote:

>check out guaifenesin

>

Before you start spending money and investing your hope read the following

and note that there are no findings to support Dr. St. Armand's

contentions! I'm afraid this looks like a book and product sales

promotion than a legitimate therapy for fibromyalgia.

regards,

BobK

http://home.tampabay.rr.com/lymecfs/bennett.htm

Presented at the Annual Meeting of the American College of Rheumatology and

Association of Rheumatology Health Professionals

October 18-22, 1996 - Orlando, Florida

A 1 YEAR DOUBLE-BLIND, PLACEBO-CONTROLLED STUDY OF GUAIFENESIN IN

FIBROMYALGIA.

, deGarmo and Sharon - Oregon Health Sciences

University, Portland, OR 97201.

Guaifenesin (GF) - an expectorant - is widely touted by word of mouth and

on the Internet as a cure for fibromyalgia (FM). The originator of this

therapy postulates that FM is due to an inherited defect in the tubular

reabsorption of phosphate with the resulting cellular accumulation of

phosphate leading to malfunction of ATP dependent sarcomeric calcium pumps

- causing muscle contractures. GF is claimed to reverse this defect due to

its weak uricosuric action and postulated phosphaturic action.

Forty (40) female fibromyalgia patients were entered into a 12 month double

blind placebo controlled study design. Subjects were randomly assigned to

take either GF 600 mg. or placebo b.i.d. The major outcome measures, the

FIQ and tender point score, were evaluated every 3 months. Renal tubular

function was also measured.

There was no significant improvement in terms of the FIQ or the tender

point score in the GF treated subjects (15.5 v 14.6). No subjects rated

themselves as cured. There was no increase in the excretion of uric acid or

phosphates in the GF treated group. Salicylates found in plants, cosmetics

and foods are said to nullify, the efficacy of GF. Hyperuricemia and

hypouricosuria were not found in any of the subjects. Thus the inadvertent

use of salicylates could not have been a confounding issue this study.

Conclusion: Guaifenesin has a comparable efficacy to placebo in treating

FM. The postulated physiologic action of guaifenesin on renal phosphate and

urate excretion was not observed.

Dr. Nye's Comments on Guaifenesin:

On 2/8/98, a participant of Fibrom-L wrote:

>>...I keep seeing mention of guaifenesin. Could someone please tell me

what it is, what aspects of the syndrome it is used to treat, and what the

side effects are?<<

Guaifenesin is a popular alternative medicine treatment for FMS, along with

magnets, vitamins, minerals, and various herbs, but there is no scientific

evidence that any of these help (by definition, " alternative " means " not

scientifically verified " ). 's unpublished study of guaifenesin in

FMS found that the rate of improvement on guaifenesin was no better than on

a placebo, an inert pill. There have been no other scientific studies

finding it effective.

A surprising number of patients will experience benefit from a medication

just because they expect to, even if it in fact has no medicinal effect.

All active medicines have this placebo effect in addition to a

pharmacologic one. The placebo effect is not imaginary, but a real physical

effect of a " mind over matter " sort.

The placebo effect and related sources of bias in uncontrolled studies are

why scientific medical treatments need to be subjected to carefully

controlled trials. These trials are what distinguishes scientific medicine

from folk or alternative medicine. An initial study of the use of a liver

extract and vitamins in chronic fatigue syndrome by Kaslow et al reported

dramatic improvement in all patients when both the patient and the

physician knew the patient was taking the active medication. When the same

researchers followed this up with a randomized, controlled, double-blind

study in which neither the patient nor the physician knew who was taking

the medication and who was getting a placebo, they found the treatment no

better than placebo. In other words, all patients reported feeling much

better from the medication, yet when they didn't know whether they were

taking the medication or a sugar pill, they couldn't tell the difference.

There is also evidence against St. Armand's theory of why guaifenesin works

in FMS and none in support of it. He has proposed that FMS is caused by

phosphate " deposits " in muscles and that guaifenesin removes these

" deposits " . NMR spectroscopy studies of muscles of FMS patients which found

no abnormalities of muscle energy metabolism also showed no increase in

phosphates. In the same study which found guaifenesin to be no better than

placebo, no increase in phosphate excretion in patients taking it was seen.

St. Armand has posted elsewhere that he does not believe it necessary to

test for tender points when diagnosing FMS (one of the two diagnostic

criteria in the syndrome definition that everyone else studying FMS agrees

upon) and he makes no distinction between FMS and myofascial pain syndrome,

so it is possible that Dr. St. Armand's [patients] don't have FMS but MPS

or some other disease. Perhaps guaifenesin is effective for MPS but not

FMS. Another study is needed to answer this question, as only

studied patients with FMS.

A. Nye MD (nyeda@...) * Midelfort Clinic, Eau , WI

da@

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Thanks Everybody.

You guys have really been supportive. I really appreciate ANY AND ALL INFO. I am waiting to be called by Hopkins, where people tell me that I have been fortunate to be involved with my medical tx. I don't know, it is what it is. s Hopkins has been quite an experience for the last three yrs. Now, I am being reffered to the "big" Hep C Specialist, well known all over, Mark Sukowlski. I have yet to meet him, He is well known, not just in Baltimore, MD for being the Best1?? in the field opf Infectious Disease and Immunloogy. Hep C is his life's work. You can imagine that Hopkins treats many Hep C patients due to the booming IV Drug use in the city. If he can't help figure it all out..wellI am willing to try almost anything after that and I do read EVERY Link sent to me. So pls, keep them coming. I appreciate it more than I can say now

peace, love and empathy, debbie

>From: Bob Kaufman

>Reply- > , >Subject: RE: [ ] Debbie - 17 months post tx >Date: Sun, 25 Jan 2004 18:40:43 -0800 > >pump boz wrote: > >check out guaifenesin > > > >Before you start spending money and investing your hope read the following >and note that there are no findings to support Dr. St. Armand's >contentions! I'm afraid this looks like a book and product sales >promotion than a legitimate therapy for fibromyalgia. > >regards, >BobK > >http://home.tampabay.rr.com/lymecfs/bennett.htm > > >Presented at the Annual Meeting of the American College of Rheumatology and >Association of Rheumatology Health Professionals > >October 18-22, 1996 - Orlando, Florida > >A 1 YEAR DOUBLE-BLIND, PLACEBO-CONTROLLED STUDY OF GUAIFENESIN IN >FIBROMYALGIA. > > , deGarmo and Sharon - Oregon Health Sciences >University, Portland, OR 97201. > >Guaifenesin (GF) - an expectorant - is widely touted by word of mouth and >on the Internet as a cure for fibromyalgia (FM). The originator of this >therapy postulates that FM is due to an inherited defect in the tubular >reabsorption of phosphate with the resulting cellular accumulation of >phosphate leading to malfunction of ATP dependent sarcomeric calcium pumps >- causing muscle contractures. GF is claimed to reverse this defect due to >its weak uricosuric action and postulated phosphaturic action. > >Forty (40) female fibromyalgia patients were entered into a 12 month double >blind placebo controlled study design. Subjects were randomly assigned to >take either GF 600 mg. or placebo b.i.d. The major outcome measures, the >FIQ and tender point score, were evaluated every 3 months. Renal tubular >function was also measured. > >There was no significant improvement in terms of the FIQ or the tender >point score in the GF treated subjects (15.5 v 14.6). No subjects rated >themselves as cured. There was no increase in the excretion of uric acid or >phosphates in the GF treated group. Salicylates found in plants, cosmetics >and foods are said to nullify, the efficacy of GF. Hyperuricemia and >hypouricosuria were not found in any of the subjects. Thus the inadvertent >use of salicylates could not have been a confounding issue this study. > >Conclusion: Guaifenesin has a comparable efficacy to placebo in treating >FM. The postulated physiologic action of guaifenesin on renal phosphate and >urate excretion was not observed. > > >Dr. Nye's Comments on Guaifenesin: > >On 2/8/98, a participant of Fibrom-L wrote: > >>...I keep seeing mention of guaifenesin. Could someone please tell me >what it is, what aspects of the syndrome it is used to treat, and what the >side effects are?<< > >Guaifenesin is a popular alternative medicine treatment for FMS, along with >magnets, vitamins, minerals, and various herbs, but there is no scientific >evidence that any of these help (by definition, "alternative" means "not >scientifically verified"). 's unpublished study of guaifenesin in >FMS found that the rate of improvement on guaifenesin was no better than on >a placebo, an inert pill. There have been no other scientific studies >finding it effective. > >A surprising number of patients will experience benefit from a medication >just because they expect to, even if it in fact has no medicinal effect. >All active medicines have this placebo effect in addition to a >pharmacologic one. The placebo effect is not imaginary, but a real physical >effect of a "mind over matter" sort. > >The placebo effect and related sources of bias in uncontrolled studies are >why scientific medical treatments need to be subjected to carefully >controlled trials. These trials are what distinguishes scientific medicine >from folk or alternative medicine. An initial study of the use of a liver >extract and vitamins in chronic fatigue syndrome by Kaslow et al reported >dramatic improvement in all patients when both the patient and the >physician knew the patient was taking the active medication. When the same >researchers followed this up with a randomized, controlled, double-blind >study in which neither the patient nor the physician knew who was taking >the medication and who was getting a placebo, they found the treatment no >better than placebo. In other words, all patients reported feeling much >better from the medication, yet when they didn't know whether they were >taking the medication or a sugar pill, they couldn't tell the difference. > >There is also evidence against St. Armand's theory of why guaifenesin works >in FMS and none in support of it. He has proposed that FMS is caused by >phosphate "deposits" in muscles and that guaifenesin removes these >"deposits". NMR spectroscopy studies of muscles of FMS patients which found >no abnormalities of muscle energy metabolism also showed no increase in >phosphates. In the same study which found guaifenesin to be no better than >placebo, no increase in phosphate excretion in patients taking it was seen. > >St. Armand has posted elsewhere that he does not believe it necessary to >test for tender points when diagnosing FMS (one of the two diagnostic >criteria in the syndrome definition that everyone else studying FMS agrees >upon) and he makes no distinction between FMS and myofascial pain syndrome, >so it is possible that Dr. St. Armand's [patients] don't have FMS but MPS >or some other disease. Perhaps guaifenesin is effective for MPS but not >FMS. Another study is needed to answer this question, as only >studied patients with FMS. > > A. Nye MD (nyeda@...) * Midelfort Clinic, Eau , WI >da@ > Learn how to choose, serve, and enjoy wine at Wine @ MSN.

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