Guaifenesin: A different perspective.

Discussion in 'Fibromyalgia Main Forum' started by Natedagw821, May 28, 2008.

  1. Natedagw821

    Natedagw821 New Member


    I have been on the Guai Protocol for almost 2 weeks. With that said, I can say that I already notice a difference. However, last night I was surfing the internet when I came across a very interesting article.

    I read the whole thing and I can say that it is very, very interesting.

    Read it and let me know your thought,,,its kind of long but worth it.

    Here is the link:

    Nathan :)
  2. Mikie

    Mikie Moderator

    Are noticing a difference. I have been on the Guai for about seven years and consider my FMS symptoms reversed. That said, however, if I get injured, sick, or very rundown (I also have CFIDS/ME), the pain can temporarily return, but never as bad as it originally was.

    Mr. London's articles have been posted here numerous times, mainly by those skeptical of the Guai Protocol. One problem which comes up is the Oregon study, which is often cited by skeptics. This study was too fatally flawed to be of any value except that Dr. St. Amand did learn about sals' blocking the Guai and that not everyone will reverse at the same dose. Other than that, the study is not very useful.

    I believe that the Guai works for additional reasons than that theorized by Dr. St. Amand. I believe he is correct but I believe there is more to the manner in which the Guai reverses the symptoms of FMS.

    We have a few people here on the protocol. Jude is the resident expert on the treatment protocol and she can probably answer most any question you may have. Just put her name in the title of your post.

    Again, I'm happy for you. Please let us know you continue to do on the treatment.

    Love, Mikie
  3. Diva55

    Diva55 New Member

    As Mikie stated MR. london has posted this piece of writing previously on the board.

    If you felt inclined to research (but I wouldn't bother), MR. London has launched many a "vendetta" on alternative treatments. He did the same for Recuperation (which helped me a lot). On this board he challenged the Methylation Protocol & Yasko's work. I've never seen his qualifications for any of these challenges.

    No matter that these treatments/ protocols helped a lot of people. It's a shame that people see a published work with lots of links and presume it's all science! Well that's my opinion anyway.

    It seems he has a lot of energy to be able to do all that writing & linking so I wonder what helped him get better.

    Hope you get the improvement that Mikie has seen - Hi to Mikie!

    Best wishes

    [This Message was Edited on 05/28/2008]
  4. tansy

    tansy New Member

    regardless of what others might think.

    We may just have to dip our toes in. Most of us research anything we feel might help well, ask questions about it, then make our own informed decisions. Sometimes we get it right, other times we may get it wrong; but I prefer to be my own lab rat rather than be anyone else's.

    Very often it's just a gut feeling; or understanding past treatment experiences good and bad. I know I made fewer bad decisions over time.

    I'm really pleased the guai works for you.

    tc, Tansy
  5. Bluebottle

    Bluebottle New Member

    Here is the UK Guai group's official reply to Mark London's 'theories' on Guai:

    "The origins of Mark London's article stem from a difference of opinions or clash of personalities on an FMS support group that existed in the years before the official US and UK groups. I'm not sure of the exact nature of this, but I've talked to Claudia about it before, as the subject will return every so often. Mark London is, or was, a technician at MIT in Boston and has no medical qualifications. In essence, the article is an exhaustive attempt to find alternative explanations for the recovery of patients on Guaifenesin, by presenting selected 'evidence' from the internet and presenting it as a coherent theory. I will agree that it reads quite convincingly, up to a point, but as a writer, I can see that this is more to do with the style of presentation than the content. There are three main faults:

    1 - A lot of it is erroneous. It would take too long to contradict everything he says but sections such as that on Vitamin D are simply wrong. Also, Guaifenesin does not relax our muscles. If it were the many thousands of patients that have followed the protocol would have felt instant relief, whereas we know that there tends to be more muscle stiffness as cycling begins. Guaifenesin can be used as a muscle relaxant, in huge doses, given at the same time as a sedative (if memory serves), but only for horses. Almost all of his 'evidence' suggests how Guai could improve FMS, but this would mean instant benefits, when case studies show that the reverse is usually true (we get worse before we get better).

    2 - There is only one set of evidence: this is not a balanced article, but one which only presents material to support the argument. It's over-exhaustive in the same way that people that deny the existence of FMS have to come up with a catalogue of reasons for individual symptoms. Essentially, as we all suffer our share of symptoms from a known range, it can only be that we must all have a set of similar complaints to give us the syndrome. Statistically, this is all but impossible, and the single cause for all the symptoms is the most likely. Mark London has to use select many individual arguments to counteract the single theory that Dr St. Amand suggest lies behind the action of Guaifenesin.

    3 - There is an agenda at work. Whether it's ego or revenge or whatever, the rationale behind the article is far from objective. In tone, Mr London sets out disprove the Guaifenesin Protocol at any lengths. Any proper scientific analysis would look at all the available evidence and work dispassionately towards a conclusion.

    All of us in the FMS community have to remain open minded about future developments. Dr St. Amand has said that he welcomes any proper scientific examination of his theory. He is a specialist in endocrinology with decades of practice behind him, teaches the subject at Doctorate level and is the recipient of the equivalent of a lifetime achievement award from his peers in the Southern Californian medical establishment. There are very good physiological reasons for seeing phosphate and calcium retention at a cellular level as the culprits behind FMS and some experimental evidence that suggest that this is the case. For many of us, the protocol was the last thing that we came to after years/decades of trying everything else to no effect and Guai is the only thing that has given consistent results. Personally, over more than six years, I have also followed thousands of others undertaking the protocol, either face to face or over the web, and the results are undeniable.

    Sometime in the future, we should have some results form the City of Hope genetic study, though none of us should hold our breath here. There is still a proper clinical trial mooted to go ahead at Tufts University at Boston (oddly enough, my girlfriend's brother is a professor there, though in a different field!), but not necessarily in the near future. Interestingly enough, just in the last couple of years it's becoming apparent that a number of scientific projects have been working on the FMS/genetic connection and that a phosphate and/or calcium excess has been found using other diagnostic methods. With this sort of convergence of research, lets hope that we can finally get some vindication for our condition and that the Mark London article can be left behind where it belongs: in the last century."
  6. Diva55

    Diva55 New Member

    Thanks for posting that.

    "There is an agenda at work. Whether it's ego or revenge or whatever, the rationale behind the article is far from objective. In tone, Mr London sets out disprove the Guaifenesin Protocol at any lengths. Any proper scientific analysis would look at all the available evidence and work dispassionately towards a conclusion."

    I agree as the same thing was done with Recuperation & attacking Alfred Blasi , the person who had come up with it (he had recovered from FM using his own research & formula).

    Mr. London states in his profile that he does this "research" as a hobby.

    Best wishes
  7. Mikie

    Mikie Moderator

    Many of the off-label uses of meds and alternative treatments have no scientific studies to prove they work. All we have is our own trial and error and results. I would love to have more research into the mysteries of our illnesses but in the meantime, I have to do the best I can with what I've got. To me, results are the bottom line. I respect anecdotal evidence even though it doesn't equal well-designed, double-blind studies in many people's minds.

    I've often said here that there are two kinds of people. There are people like me who just want results and are willing to try things until more scientific evidence is available. Then, there are those who put no stock into any treatment unless they can be shown absolute proof that it works. Neither viewpoint is wrong and neither is right. It isn't a black-and-white issue but there are many people who do see the world in only black and white. Some of us, however, see it in shades of gray. Again, it's not about being right or wrong; it's about acknowledging that we see things differently and agreeing to disagree.

    Every alternative treatment has had its champions and its detractors. I do not let the detractors keep me from enjoying the benefits I have been lucky enough to realize from the Guai Protocol. I try to present another viewpoint, especially when I see misinformation being presented here.

    Hey, Diva, hi to you too. Hope you are well.

    Love, Mikie
  8. zenouchy

    zenouchy Member

    Thanks for your article. I'm so glad that you are seeing an improvement in your symptoms after two weeks. That's fantastic!

    I always find it fascinating how different doctors can interpret the same information so radically differently. I think that really shows how complex our bodies are, how complex fibro is (and many illnesses are), and how different medications can affect different people. As Dr. London himself states in his conclusion: "Guaifenesin is not a simple drug, and fibromyalgia is not a simple disease."

    As you might guess, I'm also on the Guai Protocol and have been for almost 4 years. I was a huge skeptic and didn't think it would work. It sounded strange and too good to be true. I decided to try it though because I figured I had nothing to lose and the potential side effects were minimal. It turns out that I don't experience any of them.

    After 3 months or so of taking it, it brought my pain down from a 9 to a 0 to 2. And now, it's usually a 0. Before starting Guai, I couldn't get out of bed or function at all. Meds like hydrocodone had awful side effects and didn't even work well. Salicylates are not an issue for me---I don't block them.

    Dr. London thinks that Guai works due to the placebo effect. I can understand his thinking because many studies have been conducted on several drugs that have shown that. However, I can prove that this isn't the case for me. If this were true for me, I would think that ALL of my many fibro symptoms would be reversed, as Dr. St. Amand stated on his website that Guai would do. However, only my pain has been reversed.

    Unfortunately, I still deal with fatigue, IBS, and interstitial cystitis. I can assure you that my hopes were just as high for getting rid of these fibro symptoms too. Therefore, in my situation, if a placebo effect were in play, these symptoms would be long gone in the almost 4 years of taking Guai.

    (Dr. London has an email link on his website---I wonder what his response would be if I emailed him?)

    It's hard to know why meds work as they do. It's working great for my pain, and it sounds like it's starting to work great for you! Keep us posted.

    All the best,

  9. Mikie

    Mikie Moderator

    You don't need a doc to do the protocol. Get the book, "What Your Doctor May Not Tell You About Fibromyalgia," written by Dr. St. Amand. You can also go to to learn more.

    Of course, if one has a doc knowledgeable in the protocol, it helps but it isn't necessary. There's more to the protocol than just taking the Guai. Some docs think they know the treatment protocol but they don't. Good luck.

    Love, Mikie
  10. Mikie

    Mikie Moderator

    I think the book is well worth the money even if one doesn't do the protocol. There is some technical info in the book about the Krebs Cycle. I had to read parts of it a couple of times. Thing is, though, that it isn't necessary to truly understand the Krebs Cycle to do the treatment. It does help to explain Dr. St. Amand's theory of how our bodies cannot efficiently get rid of the phosphate debris in the mitochondria, which slows down our bodies' ability to produce sufficient energy. I liken it to faulty exhaust valves in a car's engine.

    The reason I mention this is because when one first reads the book, one can become a bit overwhelmed. I didn't even do the protocol right away. I took my time and when I felt ready, I started it. My reversal was just as the doc describes in his book.

    My feeling is that the treatment is safe and I had nothing to lose except a few dollars if it didn't work. My Fibro Fog almost immediately went away when I started the treatment. I wasn't expecting that bonus. With the rest, I had the Guai flares, followed by good days. I wanted to speed things up so I increased the dose in steps. Each time, I had Guai flares but continued to reverse.

    When I started, I was on Morphine for pain and bedridden most of the time. It was about a year before I could stay off the Morphine completely. During that year, however, I was using Morphine less and less. I also have CFIDS/ME so I'm not completely well--yet. Still, the Guai treatment allowed me to focus on healing my CFIDS/ME and I've made good progress with that. I now work part time.

    Best of luck to you with the Guai.

    Love, Mikie
  11. Bluebottle

    Bluebottle New Member

    Mark London isn't a doctor - he has no medical traing.

    For those with interstitial cystitis like me the new slow release Solo Guai Six from Cleure has no dye & I find it better than the other brands that Dr St Amand recommends. Mucinex and Prohealth slow release both contain irritating dye.
  12. Mikie

    Mikie Moderator

    Wow! We really are close. I don't get over to the Cape much any more but am going on Thurs. to order my food from the church which handles the Angel Food Program. How ironic that I work for Publix and am buying my food through the Angel Food Program. Our hours have been so severely cut that I decided to try it.

    Dr. St. Amand believes that CFIDS/ME are one and the same illness but I do not agree. They may be subsets of an umbrella condition. He and Claudia believe that if one takes more Guai for longer, the CFIDS/ME will reverse too. It doesn't matter how much Guai I take; it doesn't affect the CFIDS/ME for me. After a point, it doesn't affect my FMS either as I'm reversed and only require a maintenance dose.

    Perhaps one of these days, we can get together. I attended a couple of the FMS support meetings in the Cape but didn't care for them. Have you ever gone to one?

    Love, Mikie
  13. Mikie

    Mikie Moderator

    I appreciate your offer. The same goes for me if there is anything I can do. So far, things seem to be OK. Do you work "regular daytime hours? My schedule is all over the place. I don't work that many hours but unless I request a specific day off, I never know when I'll be working. Fridays are the exception. I always have them off. Yes, it would be fun to get together.

    The support group used to meet at Cape Coral Hospital. I think it was on one Sat. each month, but it's been years since I went to one of their meetings. Honestly, I prefer this group here. Still, I think support groups are well worth checking out.

    Love, Mikie
  14. Mikie

    Mikie Moderator

    It's OK to wander off topic in a thread. Happens all the time. Yes, I would love to get together; I just don't know how to get my e-mail and phone number to you unless we go into a private chat room. I've sometimes had problems getting in and haven't used it in years.

    I'm wondering whether you can leave a message with the Vineyard Community Church in the Cape. Their number is 239-549-8075. Tell them I'm coming in on Thurs. to place an Angel Food order and ask if they could pass it on to Mikie. If that doesn't work, we could try the chat room. I don't work evenings, so we could pre-arrange to meet there at a specific time. Whichever method works for you.

    I live alone and my kids don't live nearby so my schedule doesn't bother me. Actually, it can be kinda fun to work different hours; it doesn't get boring. If I know in advance that I need a day off, I can request it and always have gotten it. I never work on Fridays, so I plan things then.

    BTW, on Thurs., when I stop by the church, I'll be in the Cape sometime between 1:00 and 3:00p.m. It's on SE 47th Terrace, just off Cape Coral Pkwy. If you don't work too far from there, perhaps we could catch lunch. Just let me know what works best for you.

    Just thought of something. I could e-mail ProHealth and ask them to e-mail my info to you.

    Love, Mikie
    [This Message was Edited on 06/03/2008]
  15. Mikie

    Mikie Moderator

    What a coincidence! I had ProHealth e-mail my online e-address and my phone number to you at the e-address they have for you. We could pretty much go to lunch any time on Thurs. as the church takes order between 1:00 and 3:00 p.m. We could go at 11:30, 12:00, 12:30, 1:00 or 1:30 and I could go place my order after that. I hope you know a good place to have lunch nearby. I used to go over to the Cape a lot but haven't for several years. I hope you can make it. I would love to meet you.

    Love, Mikie
  16. Mikie

    Mikie Moderator

    I have heard excellent things about GE. Of course, on the Guai, I cannot take it. I really have not made lifestyle changes, just a few changes in the personal-care items I use. I do think a lot of people get turned off when they read about ridding their lives of sals. Many do not understand that they can still eat food from plants, just not supps with extracted plants/herbs.

    I am very happy for you that what you are doing has worked so well. If you never had the tender spots, perhaps you do not have FMS. A lot of the symptoms of hypothyroidism overlap with those of FMS. A lot of us with FMS also have hypothyroidism.

    The Guai does not work for everyone; nothing does. Most, but not all, failures of the Guai Protocol can be traced to hidden sals or imporper dose. It is a long, drawn-out treatment and it requires commitment and patience. There are thousands who have been helped with it. As you know, I consider my FMS symptoms reversed but I am not cured. I also have CFIDS/ME and if I get run down, sick or injured, the old FMS pain can return. The Guai has been a God send for me as, I'm sure, the GE has been for you. Thanks for letting us know how well it has worked.

    Love, Mikie

  17. Mikie

    Mikie Moderator

    Calling me in the morning will be just fine. Like most of us with these illnesses, I'm flexible about making plans. One o'clock is fine for lunch. Afterward, I can go place my order at the church. I still can't believe the coincidence of your working across the parking area. If anything comes up, we can always schedule later but if you can make it, it would be great to meet.

    Love, Mikie
  18. jaded_lady

    jaded_lady New Member

    Try some Castor oil on a white cotton flannel (found at Wild Oats Health Store) and a heat pad for tender spots.

    You will want to use the heat pad without its cloth cover and use plastic bags to put under you and the heat pad.

    It is messy, but it helps the tender spots or myfascial knots.

    I don't think those on Guai can use it, but you could.