cfsgeorge re guai etc

Discussion in 'Fibromyalgia Main Forum' started by GoWest, Sep 2, 2008.

  1. GoWest

    GoWest New Member

    I have posted a few comments elsewhere in reply to some of your questions. Here is a comment on guaifenesin and why it may work for some.

    Read this article written by Mark London.
    It makes the point that guai blocks the NMDA receptor. That is probably why it works for SOME patients. If one's problem had nothing to do with high glutamate levels in the brain or low GABA levels or some other problem with NMDA receptors then guai probably would not help at all. This might explain why some on this list get no help from guai while others do. We are not all alike.

    Mark London makes the point that quai works as a muscle relaxant and as an NMDA blocker. It does not thin mucous, and it doesn't clear toxins as St.Amand thought. That doesn't mean it doesn't work, just that St. Amand didn't figure out why it did work for some patients.

    From what I gather dextromethorphan actually does the same thing as guai, so taking a product containing both would mean you would get a double whammy. That could be good or bad, depending on your particular problem.

    The guai is cleared very quickly from the body, thus the development of timed release quai found in Mucinex. I suspect buying plain quai from a pharmacist would not be the same as timed release - it might not work long enough. what I want to know is how this would relate to/compare to the action of pregabalin (Lyrica)? You know Lyrica was just approved for fibromyalgia, probably because it affects the NMDA receptors, although I doubt big pharma gets this. They just know they can make money off of fibro patients. [Since I wrote this a few months ago I found that while I was on 300 mg of Lyrica a day I developed rapidly growing cataracts in both eyes. I do NOT recommend Lyrica. Besides all of these only treat symptoms.]

    I would encourage you to read the information at the following website for effective treatment.
    If you are interested to pursue this, there is a doctor in Sacramento who could treat you. I don't know if there is one in LA. I have a good doctor in Las Vegas, but she is new to this and still on a learning curve. Email me if you want the name of the doc in Sacramento.

    Paula Carnes
  2. cfsgeorge

    cfsgeorge New Member

    I appreciate all your help! thank you so much! i will email you as soon as IT lets me. take care and sweet dreams.

  3. Bluebottle

    Bluebottle New Member

    Here is the UK Guai group's reply to Mark London's article;

    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, 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.

    (In order to do the Guai protocol you need to follow Dr St Amand's book 'What your doctor may not tell you about fibromyalgia' exactly - Bluebottle)
  4. GoWest

    GoWest New Member

    Hum, who cares if London is right or St. Amand is right when you have c. pulmoni. You need Ivermectin, right?

    London is smarter than I am, and I am not stupid. But he wasn't putting St. Amand down, just saying that guai may work for some, but NOT for the reason St. Amand thinks.

    So we can take Mucinex timed release and it might help symptoms. But we have to deal with the underlying chronic infections, and maybe parasites, causing these diseases. I don't think guai will do that.

    You might want to read up on Joyce Waterhouse. She was a guai warrior and isn't counting on guai anymore. She also has an honest-to-goodness PhD. I am not sure she is doing anything better, but we won't go there. I am not dumb enough to bring that up. Too many flames.

    Paula Carnes
  5. Mikie

    Mikie Moderator

    I consider my FMS symptoms reversed by the Guai Protocol. Thousands have been helped by this treatment. I have always believed that there are additional reasons that the Guia works besides the theory presented by Dr. St. Amand. Thing is that it does work for many of us but like all treatments, it doesn't seem to work for everyone.

    Unlike Dr. St. Amand, I do not believe FMS and CFIDS are one and the same; however, with the FMS symptoms reversed, it has allowed me to concentrate on healing my CFIDS.

    The Guai Protocol often fails due to hidden sals. If a person is in a program with medical professionals trained in the treatment and people to help them eliminate the sals, the success rate goes up. I visited a group in Zepherhills, FL where everyone in the program was seeing significant improvement. This group uses a facilitator who helps with eliminating sals, a medical professional who does the mapping, and a doc trained in the treatment.

    I wish the Guai worked for everyone. I am very thankful it has worked so well for me. I take a maintenance dose every day and if the Guai gets blocked, I eventually start to have FMS pain. Until there is a cure, I figure I'll be on the Guai.

    Love, Mikie
  6. roge

    roge Member


    you say it doesnt thin mucus. on what basis do you say this?

    guai it is an expectorant which means it assists with mucus drainage which I would assume it does this by thinning it, no?

  7. GoWest

    GoWest New Member

    originally used in high doses to sedate animals. I know it is advertised as a mucus thinner. I don't know why. I also feel better on quai. But I think we are all really making the same point, namely that a lot of us feel better but can't go off it or symptoms return. So we have to keep looking for solutions.

    Let me just give Mark London's link again.
    He makes the point that guai blocks the NMDA receptor. That is probably why it works for SOME patients. If one's problem had nothing to do with high glutamate levels in the brain or low GABA levels or some other problem with NMDA receptors then guai probably would not help at all. This might explain why some on this list get no help from guai, but some do.

    Mark London makes the point that quai works as a muscle relaxant and as an NMDA blocker. It does not thin mucous, and it doesn't clear toxins as St.Amand thought. That doesn't mean it doesn't work, just that St. Amand didn't figure out why it did work for some patients.
  8. Mikie

    Mikie Moderator

    Are based on an old fatally flawed study of the Guai. The results were not accurate enough to draw any conclusions, such as whether the Guai helps eliminate phosphate debris. That said, though, some things were learned from the study. One was that salicylates block the effectiveness of the Guai in most peatients. The second was that success is dose-dependent. Not everyone has success with 600 mgs. a day.

    Dr. St. Amand continues to try to refine his theory and look for more answers. He is not content to just stop looking because his protocol has helped so many. He, himself, has FMS and it runs in his family. Until he found that the Guai reverses FMS symptoms for many, there was basically nothing which could do this. Most things just help patients deal more easily with the symptoms or mask the symptoms. The Guai is not a cure. Until there is a cure, those of us on the protocol will have to continue taking, at least, a maintenance dose.

    I do agree with Mark London in one area--I think the Guai probably works for more reasons than that theorized by Dr. St. Amand. The thing is that, regardless of how it works, for many of us, it does work. For me, it has been a God send.

    Love, Mikie
  9. GoWest

    GoWest New Member

    I certainly would take quai if it relieved symptoms meanwhile pursuing the underlying causes of fms and cfs.

    I find it curious that St. Amand says he has a family history of fms. Given that fms is pretty much epidemic now I wonder what his family had. Something is very wrong today. I recall knowing of one lupus patient 40 years ago, never heard of ALS or MS. Now we all know many with these diseases and many more with fms-like symptoms.

    I have my own pet theories along the lines of a few chronic, intracellular infections such as c. pneumonia, mycoplasmas, borrelia, babesia, bartonella, maybe EBV, HHV6 etc.

    But who knows? Given my pet hypotheses you can see where I don't take guai too seriously, but have taken it and it relieved symptoms.

    Paula Carnes
  10. Mikie

    Mikie Moderator

    I believe there is a genetic factor and an environmental factor. No one knows which came first. Have infections and exposure to toxins changed our genes or do our mutated genes make us more suseptible to these toxins which cause our illnesses? No one knows for sure. In any case, St. Amand believes that we cannot excrete the phosphate debris, which is a byproduct of making energy in the Krebs Cycle. It is recycled into the bloodstream where it is deposited in our soft tissue, giving us the nodules and tender points. I believe this is true but I also believe there are other reasons why the Guai is so helpful for some of us.

    It will be interesting to see whether the Methylation Cycle Protocol will accomplish the same thing and help with other things too. I do the MCP off and on but it causes too much detox for me to do it every day. I believe I can keep my latent infections under control most of the time now. The Guai takes care of the FMS symptoms. I think what the MCP is doing is chelating toxins from my body. I am very sensitive to the supps.

    Finally, I believe that there are many subsets of all these illnesses. That would explain why no one thing works for everyone. That is why I did such a comprehensive regimen to try to heal. I'm not well--yet but I keep getting better. It's just extremely slow.

    As to why we are hearing about these illnesses so much more today, I believe two things come into play. If the environment is a factor, all the toxins we are exposed to could be making us sicker. Also, we may just have better names for things today. In the old days when people got older, they complained about their Rheumatism. It could have been anything from arthritis to Lupus to FMS, or something else.

    Every treatment which has helped me heal is something I first learned of here. I haven't tried a lot of things but I did try those which made sense to me, considering my history and symptoms. I'm not a medical professional and there was little help available until I found a specialist. I had to do all my own research on each treatment. I've been lucky to have good docs who have helped me.

    Enjoyed discussing this with you. Take care.

    Love, Mikie