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.