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  #1   ^
Old Sat, May-20-06, 21:32
VegGrrl VegGrrl is offline
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Posts: 42
 
Plan: Mine
Stats: 127/127/120 Female 5'5"
BF:
Progress: 0%
Thumbs down BEWARE of GUAIFENESIN!

Do your research before you make these people any more money!
You will find many people who will tell you Guaifenesin did NOT work for them.
I for one, will tell you how much sicker it made me, and in nearly a year, did not make me any better, despite following the protocol to a T, and months after I stopped to get to the point where I was beforehand.
Many people will tell you that Fibro patients have issues with blood sugar, and if you do your research, you will find this has to do with hormones, not phosphates. So yes, a low-carb diet may help many people w/Fibro for obvious reasons.
Also, please note that there are a lot of links on there make this doctor alot of money, which never seems to quite make it to fund a scientific study that proves that his treatment works.
If you really want to go ahead and try it, wait until you know for sure it works (which could be YEARS, because many people w/fibro cycle in and out of good and bad periods anyhow) before you give them any of your money.

I was warned by other doctors that it didn't work, that they had done their own tests and found that the claims were false.
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  #2   ^
Old Mon, Jul-10-06, 01:33
mirielle mirielle is offline
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Posts: 177
 
Plan: Bernstein, M&E
Stats: 179/163.3/118 Female 5'4'
BF:2darnmuch
Progress: 26%
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Thank you for sharing this, Veggirl. I have fibro as a result of Familial Mediterranean Fever and I looked at that protocol. NONE of it made sense to me.

I am getting tremendous relief with Vitamin D3, Calcium, and Magnesium. I can now actually spring out of bed in the morning.
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  #3   ^
Old Sun, Mar-11-07, 10:46
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RobinB RobinB is offline
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Posts: 6,410
 
Plan: Atkins
Stats: 120/120/120 Female 5'2"
BF:
Progress: 17%
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I read a book about this protocol and my dh is interested in trying, but the list of things to be avoided to make this effective is overwhelming!
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  #4   ^
Old Mon, Mar-12-07, 09:38
starter's Avatar
starter starter is offline
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Posts: 16
 
Plan: atkins
Stats: 248/237/130 Female 60
BF:
Progress: 9%
Location: louisiana
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it made me feel so much WORSE, could hardly get out of bed long enough to make it to the couch
i cannot imagine what it would be like to take it for a year
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  #5   ^
Old Mon, Mar-12-07, 09:43
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Cissie_12 Cissie_12 is offline
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Posts: 1,238
 
Plan: 30 or less daily
Stats: 232.2/214.4/169 Female 68
BF:[url=http://www.Ti
Progress: 28%
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My bf who is also an RN has been on this for a while. She told me it will make you worse at first then is supposedly to help. I haven't asked her how it's working for her in quite some time. Got me curious now. Back when she first told me about this being a new experiment for fibro. I told her I'd let her go first. lol Odd thing is I went to the doctor last week for an inner ear pain and she put me on it for 10 days. Hope that short a time won't effect me too much.

Thanks for sharing!

Cissie
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  #6   ^
Old Sun, Mar-25-07, 07:06
myself myself is offline
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Stats: 265/237/180 Female 5ft 4in
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Now see, I am one of the people the protocol is working for.

I got very ill a couple years ago and was diagnosed with Rheumatoid arthritis. I was completely bed ridden and had to have help rolling over, siting up and walking, sometimes eating as well.

I was given all sorts of medications, vitamins etc. and all I did was get worse. I was given prednisone (was on that a year), methotrexate, arava, naproxen, celebrex etc. etc. etc.

Anyway, I kept telling them my muscles hurt more than my joints but they wouldn't listen so i decided to treat myself.

I bought the book about the protocol for this and decided to treat myself. I fixed my diet to a gluten free diet, and made this protocol work for itself.

Needless to say, I am siting at a computer now, walking through the stores etc. I only take celebrex in the morning and night as it is still needed for the RA portion, but that is the only drug I am on.

For me, this works. They say in the book that if it doesn't, you may have to go up to 1,800 mg a day for it to work for you. For me 1200mg is perfect.

Just thought i would give 2cents from someone it does work for.



I forgot to mention, this "will" make you worse. It's supposed to. You get worse while it cleans out your system and it takes around 2months for each year you have been sick. For some that could be a year or two of taking the medication.

When you do finally get better and are no longer sick, then you keep taking the dose that is best for you. If you stop, you will start going down hill again.

It's always best to buy the book.
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  #7   ^
Old Sun, Mar-25-07, 23:34
cindy_cfid cindy_cfid is offline
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Posts: 371
 
Plan: Atkins
Stats: 280/188/150 Female 66"
BF:Day37=2"loss belly
Progress: 71%
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It works for me. I have been low carbing for 3 years but doing guaifenesin for over 5 years. I don't think the short term guai works for me though, but I can tell if I miss a dose. Guai is fairly inexpensive - when I first started taking it, it was a prescription drug, & It was cheap. After it has became OTC & trademarked has the priced gone up so high. I do not believe it is a cure, nor do I believe in the theory behind the protocol, but it does manage the muscle pain that pain relievers do not.

Last edited by cindy_cfid : Sun, Mar-25-07 at 23:43.
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  #8   ^
Old Thu, Oct-09-08, 04:37
deb63501 deb63501 is offline
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Posts: 5
 
Plan: none yet
Stats: 190/192/135 Female 61 inches
BF:
Progress:
Talking

I too am being helped, in fact, I'm no longer bedfast and although I'm cycling still my good days are beginning to out weigh the bad. I wish people would read the entire protcol before saying it does not work. It IS supposed to make you worse before you get better, thats the nature of the beast, you're cycling has begun and your body must get rid of the gunk in the order it began to keep in but in reverse. IF YOU GOT WORSE YOU WERE ON THE RIGHT TRACK.

It takes two months for every year you have been sick to rid your body of the phosphate thats causing the problem.

For those of us willing to follow the protocol that it's helping, it's a true GodSend!!

Again, if you got worse, you were on the right track, and for me, I look at it this way, what do I have to lose? Fibromyalgia is here to stay, it's a lifelong disease that I must live with, so if it takes me a year to reverse it's effects, and I can do so with an over the counter med, and can do so at my own pace, why not go for it? What do I have to lose? One year from now I'll either be very well, or where I am, and after being in chronic pain for over 8 years, I'm certainly willing to make the effort for one year to be well for many many more......

Oh and by the way, I've been on this for one month and so far, as predicted, my left thigh has cleared and again, I'm no longer bedfast!
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  #9   ^
Old Fri, Oct-10-08, 14:15
VegGrrl VegGrrl is offline
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Posts: 42
 
Plan: Mine
Stats: 127/127/120 Female 5'5"
BF:
Progress: 0%
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I felt worse on this...for a YEAR. (Probably because I had to stop taking everything that made me feel better.)And I'd only been sick for a couple of years, so it shouldn't have taken that long to start getting better. I followed the protocol to a T, under close supervision. I have friends who tried it who didn't get better either. I went to the support group they have, and one person out of 11 said they thought they were better. It's funny how the only people who say this works are people on the Internet...
Don't you think if this really worked it would be front page news? I'm sorry but I still think it's a scam. People are making a LOT of money off this "protocol". It makes me really angry to see people w/FM being taken advantage of.
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  #10   ^
Old Sat, Oct-11-08, 05:17
deb63501 deb63501 is offline
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Plan: none yet
Stats: 190/192/135 Female 61 inches
BF:
Progress:
Question

I guess I'm a little confused about your comment that this is making them so much money.

First of all who are "they" and how is my buying mucenix at walmart making "them" so much money?

I see it this way, I am in chronic pain, severe pain a lot of days, or at least I was before the protocol. This gave me a chance, I take only the mucinex, a multivitamin and my hormone replacement (that i've been taking since my hysterectomy in my thirties) as opposed to a literal hand full of prescription drugs trying to relieve the same pain.

I now have many more good days than bad and am no longer bedfast. This protocol IS helping. I can't find any other reason for the relief. Yes, I'm cycling backwards just like the protocol says I would and I can see that specifically..

But again, lets say for the sake of this argument, it didn't work. What did I do that caused "them" to make "so much money"? And frankly What is it that I lost in the process of trying to get better? Some time and the money I spent on mucinex? Thats it. Well worth it to even see if the protocol works if you ask me, and frankly I'm glad I DID try it because now I'm on what appears to be a road to recovery/relapse. There is no cure for fibromyalgia. NONE. With that in mind, why discourage anyone from trying a potential breakthrough for them, just because it didn't work for you? Just because it didn't work for you, does not negate that it does and can work. And for one who lives with chronic pain, if someone told me that going outside in the winter and dancing naked in the street would have given me pain relief, I'd have given that a try.
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  #11   ^
Old Tue, Oct-14-08, 17:47
VegGrrl VegGrrl is offline
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Posts: 42
 
Plan: Mine
Stats: 127/127/120 Female 5'5"
BF:
Progress: 0%
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The "they" I am referring to are the creator of the protocol and his staff. The doctor wrote a book. (What's annoying, is that it looks like a general purpose book about Fibro, seems very knowledgeable, totally draws you in, and then ends up being all about touting The Protocol.) His nurse wrote one too. They get paid to speak to groups regarding this "protocol", as well. They are also affiliated with companies that sell products that are salicylate-free. Hmm...Who could that be targeted at? Not people who are doing their protocol? People sick w/Fibro and CFS?
They say they are raising money for their non-profit by selling the products, but where is that money going? Supposedly to fund that study to prove to the world that Guaifenesin works. But it's been years now, and no study. Also, many of his staff are independent reps for that company, have family who have been on the board of or otherwise affiliated with that company. Can you say conflict of interest?

Granted, many people buy their Guai from many different sources, but if you go see this doctor who made up this protocol, he sends you next door to a compounding pharmacy where you get to pay $35 for it.

I will give you that there could be something to it, because it did make me sick, and all of that can't be attributed to giving up my meds, supplements, and creams, most, but probably not all. But "something" does not make it a treatment. It makes it an experiment. This doctor and his staff act like it's a god-given fact. I was actually talking about this with my new FM/CFS doctor the other day. He has many patients who also tried the protocol. He even tried patients on the protocol. We both don't get all the little idiosyncrasies about the studies.

I do have a friend who says it helped, BUT he also says he now takes magnesium instead, and it does the same thing. (Which kind of fits with the whole being "something" to it because of the whole phosphates-calcium-magnesium connection, but if you can just take magnesium, shouldn't that doctor have figured that out instead of subjecting people to the nightmare that is the Guaifenesin Protocol?) Maybe there's a phosphate connection. But it's caused by SOMETHING ELSE. He says it's a genetic defect. But Google it and you'll see that FM is not considered hereditary.

If I was cycling for a year, then I was at least on the right dose. And I said I got sick a couple of YEARS, not a couple of months before. Plus, I would hope that being directly under this doctor's supervision he would have been able to tell if I was on the right dose. According to him, I was. And according to his maps, I was progressing. A good friend who started it at the same time as I, and was even more meticulous and obsessed than I was with it, went on for 9 MORE months, to no avail. It's really easy to get wrapped up in that whole online community and half-brainwashed with all the Guai talk. Notice that if anyone tries to ask any good questions about it's validity though, they are shushed, and potentially even kicked out.

As for my being a vegetarian getting in the way...at the time I hardly ate salad or veggies or fruits. My doctor called me a carbotarian. I tried the HG Diet of course, as per the protocol doctor's advice, but that didn't help either...(Though I've tried other low-carb diets since, and they HAVE helped because my adrenals were a mess and getting that helped things.)

If it's helping you, I'm happy for you, but I would be willing to bet a lot of money your are in the minority. I'm just sick of hearing people singing it's praises many without knowing the whole deal. Many people start talking about how great it is before they can even possibly say they are significantly better, they get so caught up in the hype and promises. Trust me, I'm not one of those people who doesn't understand about how it works, been there, done that. I was DEVOTED to it.

Oh, also, I recently found out that the hospital where this doctor was a professor doesn't even consider FM a real illness. Their rheumatology department wouldn't even treat FM patients. So I guess that oughta tell you a little more (besides my experience w/at least three other doctors who agreed they'd tried their patients on it and hadn't seen results) about his reputation in the medical community. If anything it's hurt the credibility of our disease even more. (And this is L.A., not some hick town...I had never encountered such disbelief of FM before!)

Okay that's all I'm going to say about that.
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  #12   ^
Old Wed, Oct-15-08, 06:32
starter's Avatar
starter starter is offline
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Posts: 16
 
Plan: atkins
Stats: 248/237/130 Female 60
BF:
Progress: 9%
Location: louisiana
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i have not heard of protocal [will try and look it up] but i did hear about the guaifenesin and like a lot of FA/CFS i will try anything

when i first was taking it, i took it in the morning and the results were horrible slept all day and all night and hurt worse all the time
when i began taking it at bedtime those side effects abated, i felt better for a few months but i have noticed that symptoms are creeping back

i am also on vit B12, otc analygesics, celebrex [not every day] i also take ambien some nights

i buy guaifenesin over the counter or on line and the expense is not too great
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  #13   ^
Old Fri, Oct-31-08, 20:13
cindy_cfid cindy_cfid is offline
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Posts: 371
 
Plan: Atkins
Stats: 280/188/150 Female 66"
BF:Day37=2"loss belly
Progress: 71%
Default

Guaifenesin is blocked by most plant based supplements - spirulina, garlic oil etc. When I first started many years ago, I quit ALL medications & supplements & then tried to add them back in after I found out how guaifenesin worked. I found the guaifenesin helped more than other things I was using - like daily B12 injections, which had helped the most to that point. I got MUCH worse for a few days before I got better. It is NOT a cure but for me it does manage the pain. If I miss a day or take something that blocks it, I can tell.
Guaifenesin (Mucinex) is fairly inexpensive. I get mine from ebay. When the protocol first came out & it was a prescription drug, it was CHEAP. Mucinex stopped competition and prices doubled but it's still cheaper than anything else and I can't bear the pain and I hate the thought of anyone else suffering.
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  #14   ^
Old Tue, Sep-07-10, 14:46
Debwill Debwill is offline
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Plan: Atkins
Stats: 170/160/135 Female 5"5"
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Default "What Your Doctor May Not Tell you About Fibromyalgia"

Yawza, sis you get the wrong info about the Gauifenesin Protocol.
Heck yeah, if ya just go out and buy some guai and take it (For Fibro, I'm assuming) then you got mighty sick and hate Gaui and want to warn the world.
I do not blame you at all. But there was a very big failure to communicate if someone did this to you.
Hi, my name is Deb, Fibrogirl Deb, Chicago. I got super Fibro sick when I was 39, I'm 46 now. I went through all the normal stuff of 50+ docs + the Mayo clinic + losing everything and just about everyone! As we all are at times suicidal, etc. If I didn't have a younger up and coming husband I'd have offed myself. But you got some really bad info. The Gaui Protocol is not just where you go out and buy some guai and get sick and get mad and yell at the world.
It is first and foremost a book: called "What Your Doctor May Not Tell You About Fibromyalgia" By Dr. R. Paul St. Amand. Who is like 84 now, so if he gave you the wrong info, I really do feel bad for you. The Gaui Protocol, first of all is the diet that this site promotes and 2nd it teaches you to get your sleep ritual working for you to get into the 4th level of deep healing sleep.
If you'd ever read the book, and only did those 2 things, you'd feel much better, most of us figure that out on our own, actually.
The Guai portion is about 10x harder than chemo-therapy. People with cancer and Fibro would rather have their cancer back than go through the Guai portion of the protocol.
It CAN make you so sick you want to quit every hour of every day. And if you don't have a Doctor who understands the Guai Protocol then you are in for a rough time as I can see by your post.
When done properly, yes the Gaui is supposed to make you sicker, much sicker if you take too much. The problem is that idiot doctors don't read the book and screw people up, like you. WOW, and what is so sad is that you had just entered the first phase of the reversal of your illness.
It is NOT a miracle pill...well actually it is, ONLY IF YOU DO IT PROPERLY, by first reading the book and understanding that you are supposed to get sick.
Heck if it were as easy as just taking this silly pill, we'd all be healed.
I have Fibro and got very sick and bed-ridden for 2 years and lost it all, as we all do. I did the Guai Protocol (properly) and yes you take a stroll through hell, as your condition reverses itself. It is only for the strongest of us.
And there are many months of preparation you have to go through before you ever take that first pill. You simply cannot just go out and get some guai and expect it to fix your life. It does work, but only if you get the proper info about your dosage and have the time to be sick, just as you would with chemo-therapy. My Fibro cleared in only 14 months (I cheated and used pain pills and upped my dose often to get through the UGH part as fast as possible) I can now run 10 miles a day. Yes, it is a hellish protocol, and not for the feint of heart. There IS no cure for Fibro. But this is the closest thing we have and I am in a permanent remission now since 2007. My goal in life is to stop these idiot doctors from prescribing Guai without understanding and giving out the book first.
I am a scientist, my Father is a drug chemist and we both laughed at how silly this Mucinex/guai idea was. SO I did it just so could go out and yell at everyone that it is stupid too! 6 months into the hell I began to get good days. I was in shock. Then in 12 months I felt cured. In 14 months my final symptom of anxiety vanished and that was it. All done. I will never ever go a day without my Guai until I die. It flippin' worked! It was hell, but that crazy thing worked! I even video-taped a bit every week and will upload it asap.
(waiting on a a Mac Mini cable)
The only problem is idiots who tell you to go out and start taking Guai, just like that. It happens every day. Even dentists now tell Fibros to take Guai.
IT DOESN'T WORK THAT WAY. Oh they anger me by giving incomplete info and make people suffer when all that shoul've done is to tell them just to read the book, find a GOOD Guai doc who can guide your dosage so that it is tolerable and give you meds to make it through that hellish portion.
I now take about 2400mg of Guai every day and it feels like nothing. Like I took a baby aspirin. (Now, that is)
Here's another way to say this: why is it that a normal person can take Mucinex/Guai and all they get is relief from cold/flu symptoms. Why did YOU get sick from that same med? IT MEANS YOU HAVE FIBRO, SINCE ONLY FIBROS REACT WITH SEVERE UGH! When THEY take it.
It is only more proof that you DO have Fibro and what really makes me feel for you is that you just smacked right up against the fix, and walked away angry only because you got some really bad info on Guai and how to use it.
I am so sorry this happened to you. I really am. But I'm angrier at the doc who told you to do this without the proper guidelines and prepping for it.
Low carb diet and sleep rituals are part of the book too. I'm just a housewife in Chicago, who fights against stupid doctors who make the protocol look so bad, and create Guai haters, when so many could be healed if only they knew the whole story. I am very very sorry this happened to you.
dkrolls~swbell.net
If you want the book for free, I send them out for this very reason. Amazon has used ones. The library has them too. They did not write the book for profit. It is a non-profit organization. They wrote the book so crap that happened to you stops.
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  #15   ^
Old Tue, Sep-07-10, 15:13
Debwill Debwill is offline
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Default It's a non-profit organization 501(c)3

You did not understand nor read the book. You are on a low-carb website, talking about how we don't have hypoglycemia....um...we do. It's just that the test is outdated and what it says is IF YOU DO BETTER ON A HYPOGLYCEMIA DIET which is a low-carb diet and you get better then stay on it. period.
Naturally all docs talk about checking for hormones and blood to make sure you don't have other problems. It would be improper for any doc to tell you. You have Fibro without testing you for other crap first.
It's like saying: check with your doctor before beginning a new diet

If you did it for a year with zero results, then you were blocking, or have not followed the diet and are confusing low blood sugar with Fibro. Or you got cheated at the pharmacy.

I just blocked yesterday by eating 2 mint ice cream sandwiches. If you were on the Gaui Protocol and cleared your home of all "sals" and had a proper doctor who mapped you. If you saw no results in a year then you were blocking. or you are experiencing hypoglycemic-type symptoms, which mirror Fibro...or you did not clear your home of "sals" which block the meds..

And yes, for some older patients 60+ it takes longer to get that first good day.
So I assume you are very old and a bit Fibro-fogged since your quotes and simplifications of the protocol are incorrect.

For God's sake, please don't stop the stronger of us from trying it. It is my miracle. It is hell on earth for a time if you take too much, yes, but it works if you work the program properly.

It is the safest drug, and so what if I have to get sick to get better. It's better than living with Fibro.

I emplore you to let people read the book and at least give it a try.
It saved my life.
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