Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Phil, I will post every month or so on my status. You can find all of the information on the Guaifenesin protocal by just typing it in your web search. Also, Dr St Amand wrote a book on the therapy. > Bob > > Please keep us informed. How does the guaifensin work? > > Phil > Guaifenesin > > > > > > Hello Group, > > It has been a while since I posted and I will try to give you all a > > heads up on my past 5 months. I did the > > Heparin/Imuplus/Oliveleaf/T3/Adreneal/ Licorice/$$$$$$$$$ etc... > > thing for quite a while. I got some benefit after a couple months. > > What I thought was feeling better. Then the process shifted again and > > I totally crashed. I began to realize that this approach while > > provides some benefit, overall it was a drop in the bucket. Now don't > > get me wrong it has helped a few. But those of us who fall in the > > category of being progressive, lose weight, fatigue, terrible nauseau > > just isn't happening. > > About 7 weeks ago I pulled the plug on everything and started the > > Guaifenesin protocal outlined by Dr St Amand. The first 3 weeks I > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 lou, I am taking Guai right now..It has been a couple of months and I haven't noticed anything yet...I'm sure I am not blocking and I am at 3600mg...so I don't know why I am responding. I haven't heard anything negative about it not working or anything...How long have you been on it and what is your dosage? Take care, Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Hi Suzanne, I'm on 800mg daily and I feel like I am cycling but I feel better a lot more than I feel bad lol. I belong to a support group on Egroups, GuaiSupport and it's great to havce someone to tlak to about it. And I've been on since August off and on ..... no doctor, no mapper, all on my own. Lou >From: " SUZANNE L MAYBELL " <MAYCROSS@...> >Reply-egroups ><egroups> >Subject: Re: Guaifenesin >Date: Sun, 5 Nov 2000 20:04:18 -0600 > > lou, > >I am taking Guai right now..It has been a couple of months and I haven't >noticed anything yet...I'm sure I am not blocking and I am at 3600mg...so I >don't know why I am responding. I haven't heard anything negative about it >not working or anything...How long have you been on it and what is your >dosage? > >Take care, >Suzanne > > > > >This list is intended for patients to share personal experiences with each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Lou - I tried this and my FM pain got much worse. make sure you are not using any salicylates with this - any herbal remedies will cancel the effect. Best, Jennie --- Lou <stockdalegirl@...> wrote: > > Hello everyone. I'm new, joined last night and > wonder if anyone is tryin > Guafenesin??? I've had FM since a hysterectomy in 84 > and so far the > guaifenesin is the only thing that has helped me at > all. > > MAry Lou > > > _________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at > http://www.hotmail.com. > > Share information about yourself, create your own > public profile at > http://profiles.msn.com. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 a asks how she can find a doctor in her area who knows about guai and mapping. The answer is not an easy one. Go to the www.guaidoc.com site and see if there is one listed there in your area. Or you can do it the way I did before Dr.St. Amand's book came out. I copied everything I could that I thought my doctor would read and I gave it to him. When he realized how safe gaui was he wrote me a prescription. I was not mapped, I based my dose purely on my symptoms and got help from the folks on the guai support list. You can do this on your own. It is harder but you don't need a doctor for it. It is better if your doctor knows what you are doing so that he can help you get through painful times. I was lucky and didn't need that sort of help. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 Margret, Does everyone experience the degree of burning that you have described in your email when you are taking guaif.? Is there not any test that you could take to find out if phosphate build-up is the problem. Thanks Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 > Margret, > Does everyone experience the degree of burning that you have described in > your email when you are taking guaif.? > Is there not any test that you could take to find out if phosphate build-up > is the problem. > Thanks Jill Hi Jill, No not everyone. Not a lot of people do have the burning mouth. Most people do have the burning, gunky eyes and urine in a heavy cycle. A lot of people talk about burning feet even before reversal with Guaifenesin. What ever the worst symptom before Guaifenesin will be the worst in reversal. If your worst symptom is fatigue,insommnia, pain or whatever will be the worst. No there is no test, too many variables. You could do a Guai trial yourself..if you do not have FM all you will get is a runny nose. If you have FM you will get worse..when you hit the right dose. You will, however, be reverse cycling to better. A good massage therapist or chiropractor can feel abnormal areas. It is NOT the trigger points that are mapped but the lumps abd bunps. A tip for mapping is that the earliest site to reverse in most patients is the left thigh. When the left thigh is examined it is often described as one on the most tender areas of the body. On proper dosage this is the first to clear and as soon as one month or at least partially in that time. The dose is either too low or the person is blocked by salicylate, if there is at least no partial clearing. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi Jeff, > I am about to start on this drug. Did you know has a guaifenesin group that's great. Also, this group is huge at 1500 with lots of experts and is not http://maelstrom.stjohns.edu/archives/Guai-Support.html Plus, I'm on my forth year of guai' Bob Joy , http://pages.cthome.net/xx/guait.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 > I am about to start on this drug. One person posted that she had > been on this for 11 months but no opinion as to benefit. Can we have > one for the sake of the group--not to mention my sake? > I don't mean to sound contrarian or combative--especially in my > first post to this group-- but as for the message at the bottom in > terms of " consulting the doctor on any treatment, " there are many > treatments they don't even know about (which would include > Kutapressin, Guaifenesin, Imunovir, and undoubtedly others), so in > those cases I say " s_ _ _ _ 'em. " (doctors, ie.). Yes, of course you > need to know potential risks and interactions, but most reasonably > intelligent persons can handle these issues if they are responsiblly > minded. --Jeff, stealth virus positive, CFIDS for decades Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 > I am about to start on this drug. One person posted that she had > been on this for 11 months but no opinion as to benefit. Can we have > one for the sake of the group--not to mention my sake? > I don't mean to sound contrarian or combative--especially in my > first post to this group-- but as for the message at the bottom in > terms of " consulting the doctor on any treatment, " there are many > treatments they don't even know about (which would include > Kutapressin, Guaifenesin, Imunovir, and undoubtedly others), so in > those cases I say " s_ _ _ _ 'em. " (doctors, ie.). Yes, of course you > need to know potential risks and interactions, but most reasonably > intelligent persons can handle these issues if they are responsiblly > minded. --Jeff, stealth virus positive, CFIDS for decades Jeff, In my humble opinion, this is by far the best answer,not just for any particular subgroup, but for everyone with CFS/FM. My wife and I both have this dreaded disease. For me its been 10 years and for her its been five. Yesterday, after three months on the protocal, it happened for my wife. A completely normal day! For me, it will take longer. It's very difficult to convince people of this. (Understandably). My suggestion is to read the archives at http://www.linkcounter.com/go.php?linkid=42273 and look for progress reports. Compare this to the archives of any other group. The proof is in the pudding. If this gets you interested, buy the book and read it. It's a tough protocal because you get worse before you get better. I think now after 5 months I am as good as I was when I started, but it's been very tough at times. It's critically important to know and understand the protocol and to do it correctly. If you don't you will fail. If you do it correctly and for as long as it takes, you will succeeed. It's as simple as that. Dan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Jeff, Dr. St. Amand, the major proponent of using guaifenesin for the treatment of fibromyalgia, found that it was good at expelling inorganic phosphates, Pi, from the body. From cell physiology it has been found that in an acidic cellular environment there is a greater accumulation of Pi. While many people with FMS/CFIDS have found good results taking guaifenesin, I believe that it is a lifetime regimen. When they stop taking guai the symptoms eventually return. One key, I believe, is to restore the alkalinity to the cell so that the Pi is not accumulating to begin with. I wish you the best success with your experimentation. Looking forward to seeing some positive results posted to the group. Remember, consult with your doctor first In this day of litigation everything must carry a disclaimer for protection. All the best, Jim clements@... Fibromyalgia: A hypothesis of etiology http://www.xmission.com/~total/temple/index.html > I am about to start on this drug. One person posted that she had > been on this for 11 months but no opinion as to benefit. Can we have > one for the sake of the group--not to mention my sake? > I don't mean to sound contrarian or combative--especially in my > first post to this group-- but as for the message at the bottom in > terms of " consulting the doctor on any treatment, " there are many > treatments they don't even know about (which would include > Kutapressin, Guaifenesin, Imunovir, and undoubtedly others), so in > those cases I say " s_ _ _ _ 'em. " (doctors, ie.). Yes, of course you > need to know potential risks and interactions, but most reasonably > intelligent persons can handle these issues if they are responsiblly > minded. --Jeff, stealth virus positive, CFIDS for decades Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 > > I am about to start on this drug. One person posted that she had > > been on this for 11 months but no opinion as to benefit. Can we have > > one for the sake of the group--not to mention my sake? > > I don't mean to sound contrarian or combative--especially in my > > first post to this group-- but as for the message at the bottom in > > terms of " consulting the doctor on any treatment, " there are many > > treatments they don't even know about (which would include > > Kutapressin, Guaifenesin, Imunovir, and undoubtedly others), so in > > those cases I say " s_ _ _ _ 'em. " (doctors, ie.). Yes, of course you > > need to know potential risks and interactions, but most reasonably > > intelligent persons can handle these issues if they are responsiblly > > minded. --Jeff, stealth virus positive, CFIDS for decades Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Hi - Re the post on Guai last week - I tried this for a while last year for my FM pain. It increased so much in the first week that I had to discontinue the product, which I understand is normal if you really need to take it. I just wasn't strong enough. Since then I have started taking plaquenil which has really helped my FM pain, so I haven't tried Guai again. But both my internist and my rheumatologist were not opposed to me using it if I wanted - they said it is a benign treatment that does help some people, although they said the percentage of their patients helped was not high. That's about all I know - Jennie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 This particular idea that Phoshpate accumulation is behind the mess called CFS/FM has apparently been disproven by 's study. So the mechanism must be different. There are different ideas about this and I got an email from a guy who swears that combining undenatured whey protein with Guai is the key toward quicker results. Go figure.... Jeff >>> Jeff, I am only aware of one study Dr. did with regards to Guai, so if we are referring to different studies please excuse the misinerpretation. Dr. 's study was done before the importance of abstaining from all forms of salicylates (except for foods, but including herbal supplements, topical preparations with herbal ingredients, etc.) was knoen, therefore it was fundamentally unsound. The protocol per St. Amand requires strict avoidance of all forms of salicylates, which is one of the aspects of the protocol that make it difficult for some. I took Guai for almost two years, and could definitely see changes in my " map " of the fms lumps to which St. Amand refers when i inadvertently got some exposure to salicylates. When i was totally free of salicylates, and at my correct cycling dose, my maps noticeably improved. I'm no longer on it because my correct cycling dose was removing heavy metals as well as phosphates, and i was becoming more debilitated, as my poorly funtioning gut/liver and kidneys could not excrete all the toxins that were being released fast enough. so i am working on improving my liver/gut function as well as my immune system so that i can handle the release of the mercury and lead, particularly, that are stored in large amounts in my tissues and organs. (Yes, I have been found to be mercury toxic and suffered severe lead poisoning as a baby, and neither was being releasd until starting guai - maybe another potential use for guai down the long road of research) donna in NC PS - Cheney staes that Guai is a cellular detoxicant (which is what happened in my case), and so is undenatured whey, or rather glutathione which the whey is supposed to increase, therefore the combination of the two makes for pretty potent medicine in my opinion. And it could be another reason why my " detox " was so strong at the correct dose, for i was taking both at the same time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 > Hi - > Re the post on Guai last week - I tried this for a > while last year for my FM pain. It increased so much > in the first week that I had to discontinue the > product, which I understand is normal if you really > need to take it. I just wasn't strong enough. Since > then I have started taking plaquenil which has really > helped my FM pain, so I haven't tried Guai again. But > both my internist and my rheumatologist were not > opposed to me using it if I wanted - they said it is a > benign treatment that does help some people, although > they said the percentage of their patients helped was > not high. > > That's about all I know - Jennie > >Thanks much for the input. Jeff> > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 > This particular idea that Phoshpate accumulation is behind the mess called > CFS/FM has apparently been disproven by 's study. So the mechanism > must be different. There are different ideas about this and I got an email > from a guy who swears that combining undenatured whey protein with Guai is > the key toward quicker > results. Go figure.... Jeff >>> > > Jeff, > I am only aware of one study Dr. did with regards to Guai, so if we > are referring to different studies please excuse the misinerpretation. Dr. > 's study was done before the importance of abstaining from all forms > of salicylates (except for foods, but including herbal supplements, topical > preparations with herbal ingredients, etc.) was knoen, therefore it was > fundamentally unsound. The protocol per St. Amand requires strict avoidance > of all forms of salicylates, which is one of the aspects of the protocol > that make it difficult for some. I took Guai for almost two years, and > could definitely see changes in my " map " of the fms lumps to which St. Amand > refers when i inadvertently got some exposure to salicylates. When i was > totally free of salicylates, and at my correct cycling dose, my maps > noticeably improved. > > I'm no longer on it because my correct cycling dose was removing heavy > metals as well as phosphates, and i was becoming more debilitated, as my > poorly funtioning gut/liver and kidneys could not excrete all the toxins > that were being released fast enough. so i am working on improving my > liver/gut function as well as my immune system so that i can handle the > release of the mercury and lead, particularly, that are stored in large > amounts in my tissues and organs. (Yes, I have been found to be mercury > toxic and suffered severe lead poisoning as a baby, and neither was being > releasd until starting guai - maybe another potential use for guai down the > long road of research) > > donna in NC > > PS - Cheney staes that Guai is a cellular detoxicant (which is what happened > in my case), and so is undenatured whey, or rather glutathione which the > whey is supposed to increase, therefore the combination of the two makes for > pretty potent medicine in my opinion. And it could be another reason why my > " detox " was so strong at the correct dose, for i was taking both at the same > time. >>Hmmmmmm...Velly Intellesting....!!! Thank you!!! Jeff>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 If you want further info on guaifenesin which Amand doesn't talk about, I suggest you look at the following web page: http://web.mit.edu/london/www/guai.html Guaifenesin is a propanediol derivative, and these drugs act as central-acting skeletal muscle relaxants by selectively depressing transmission of nerve impulses at the internuncial neurons of the spinal cord, brainstem, and subcortical regions of the brain. At low doses they act to relax hypertonic muscles and to lower response to sensory stimuli, i.e. pain. Robaxin, a commonly prescribed muscle relaxant, is also in that class of drugs, and is very chemically related to guaifenesin (it is a " carbamate " of guaifenesin, a form that is preferred, since it doesn't get metabolized and excreted as rapidly as guaifenesin). > that were being released fast enough. so i am working on improving my > liver/gut function as well as my immune system so that i can handle > the release of the mercury and lead, particularly, that are stored > in large amounts in my tissues and organs. (Yes, I have been found > to be mercury toxic and suffered severe lead poisoning as a baby, > and neither was being releasd until starting guai - maybe another > potential use for guai down the long road of research) Then I suggest you look for other drugs. Guaifenesin is likely not to affect any heavy metals, considering that probenecid, another uricosuric drug, doesn't affect heavy metal excretion either, and both guaifenesin and probenecid's actions are blocked by salicylates, so they likely affect the kidneys in the same manner. On the contrary, guaifenesin's actions might actually increase heavy metal retention. I know someone who was responding to guaifenesin, who then did urinary tests comparing being on and off guaifenesin. Not only did the tests not show any difference in phosphate or other mineral excretion, but to his surprise it showed that excretion of heavy metals, especially lead and aluminum, was decreased. I suggest if you are trying to detox heavy metals, you might want to do a similar urinary comparison. > PS - Cheney staes that Guai is a cellular detoxicant Unlikely. Guaifenesin is quickly metabolized within 20 minutes and rapidly excreted from the body. This is why it's mainly used as a muscle paralyzer in surgery on animals by vets, i.e. it's effects wear off quickly after surgery. It's not used in humans, mainly because of it's hemolytic effect. I.e., it breaks down red blood cells. At low doses this effect might be beneficial to some people, i.e. to reduce platelet aggregation. At high doses, this might be harmful, especially if combined with other supplements and drugs that have similar effects, i.e. antioxidants such pycnogenol and ginko, MSM, vitamin E, and heparin which all have such an effect. Herbal handbooks warn against taking guaifenesin if you are prone to bleeding problems. Guaifenesin affects mineral excretion by blocking their reabsorption by the kidneys, thereby releasing them into the urine rather than keeping them in the blood. Any effect on cells would therefore be quite indirect. And although the study has been claimed to be flawed, it should be noted that if you look at the urinary tests from that study, while no change in phosphate was detected, there is about a 33% increase in calcium excretion. I know someone who took guaifenesin and felt awful, and then later discovered he was calcium deficient, so people might want to be aware of this effect. Additionally, a study has shown that some people with CFS actually might be misdiagnosed, and instead have phosphate diabetes, a condition with similar symptoms to CFS, which is caused by the kidneys not retaining enough phosphates. If guaifenesin actually was able to increase phosphate excretion (and there is no proof of this), it could actually be harmful to these people. Btw, as my web page mentions, there is no proof anyway that excess phosphate could be responsible for any of the symptoms of fibromyalgia. Mark London MRL@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi, Alkalinity, hmmmm. The major metabolite of Guaifenesin is lactic acid. Are you sure Guaifenesin creates an alkaline environment. > > Jeff, > > Dr. St. Amand, the major proponent of using guaifenesin for the > treatment of fibromyalgia, found that it was good at expelling > inorganic phosphates, Pi, from the body. From cell physiology it has > been found that in an acidic cellular environment there is a greater > accumulation of Pi. While many people with FMS/CFIDS have found good > results taking guaifenesin, I believe that it is a lifetime regimen. > When they stop taking guai the symptoms eventually return. One key, I > believe, is to restore the alkalinity to the cell so that the Pi is > not accumulating to begin with. > > I wish you the best success with your experimentation. Looking > forward to seeing some positive results posted to the group. > > Remember, consult with your doctor first In this day of > litigation everything must carry a disclaimer for protection. > > All the best, > Jim > clements@x... > Fibromyalgia: A hypothesis of etiology > http://www.xmission.com/~total/temple/index.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2001 Report Share Posted May 9, 2001 To be exact, the metabolite is B-(2-methoxyphenoxy) lactic acid, and the metabolite is found in the urine, not in the cells. > > > > Jeff, > > > > Dr. St. Amand, the major proponent of using guaifenesin for > the > > treatment of fibromyalgia, found that it was good at expelling > > inorganic phosphates, Pi, from the body. From cell physiology it > has > > been found that in an acidic cellular environment there is a > greater > > accumulation of Pi. While many people with FMS/CFIDS have found > good > > results taking guaifenesin, I believe that it is a lifetime > regimen. > > When they stop taking guai the symptoms eventually return. One > key, I > > believe, is to restore the alkalinity to the cell so that the Pi is > > not accumulating to begin with. > > > > I wish you the best success with your experimentation. Looking > > forward to seeing some positive results posted to the group. > > > > Remember, consult with your doctor first In this day of > > litigation everything must carry a disclaimer for protection. > > > > All the best, > > Jim > > clements@x > > Fibromyalgia: A hypothesis of etiology > > http://www.xmission.com/~total/temple/index.html > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Hello, . I quickly read your Guaifenisin article; I am sorry you have been through so much. However, one of the gists I seem to get - correct me if I'm wrong - is that Magnesium, correctly balanced with calcium - will do largely the same thing. I've been on guai for two months, with an initial energy dip (but not too bad), a high, and then a steady drop. I attribute much of this to lack of discipline; the fact that I'm getting to bed at 2 and waking 11-12, and have done a lot of running around to find a half-decent practioner here, have taken a toll. But so has, I'm thinking now, slacking off on the Mg and B12. When I started Guai, I dropped Mg Glycinate from Metagenics for another brand - an oxide - because it was cheaper and easier to swallow. As soon as I started Guai, I got constipation - many would expect as such, but that was not a previous symptom for me. I restarted the glycinate under a dietician's urging two days ago, and today I got up like a double-decker bus ran over me. I wonder if this is Mg kicking in, because I dropped Guai this week in favor of Milk Thistle. (I've had high liver enzymes since I've been sick; the dietician said the thistle might fix this in 4 weeks.) Also, I haven't been shooting up with B12 too much. Before, it was 3 times/wk. Last week, it was once, if that. It's an odd mentality - you don't like to drug yourself or feel like you're dependent on drugs, so you don't take the ones you need. Your article interested me because my FM is minor, my CFS is major; and the Mg and B12 I felt were major helpers before I started Guai. It also hints - hints - that the immune system is helped by all this. Anecdotally we know this for allergies, etc., but you're talking about killing mycoplasma (were you tested? Why aren't you on antibiotics?). I say this because it would be interesting if the guys at Scripps/SUNY doing the new study did PCRS for the suspected viruses as well as immune panels; we could then see, as you mentioned, who is being helped from what and how - i.e., sort the bodies out. 'Nice bit of writing, and I hope you continue to clear and feel better. - N. in CA + for stealth, C. Pneumoniae, Candidas now and thenm past EBV titers, sticky blood, some FM, whacked liver, whacked brain! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 I agree with everything had to say. Guaifenesin got rid of my phosphate deposits; helping a great deal with pain, heart palpitations, and dry eyes; but like most patients that was just one part of my illness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 In a message dated 6/3/01 11:08:33 PM Eastern Daylight Time, 2276@... writes: > I agree with everything had to say. Guaifenesin got rid of my > phosphate deposits; helping a great deal with pain, heart palpitations, and > dry eyes; but like most patients that was just one part of my illness. > > > HI , Could you tell me what phosphate deposits are? My phosphorous is always high but I dont think that this is the same thing? How do you know if your phosphates are elevated? KRISTINA " If we all worked on the assumption that what is accepted as true is really true, there would be little hope of advance. " Orville Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Thanks for the enthusiastic response so far. Either I have solved the riddle of guaifenesin and a lot of people are going to have to change the way they think or I need you guys to help me get this sorted out. One or two of you have suggested that I should have given a direct URL to my paper, so here it is. /files/RTFWeb% 20Fibroguai.htm Good reading, > > The recent correspondence points up the almost total confusion that > exists regarding the role of guaifenesin in treating fibromyalgia. I > have spent over a decade researching and experimenting with agents > that share some of the effects of guaifenesin and in response to this > situation I have written a paper entitled FIBROMYALGIA & GUAIFENESIN - > THE RIGHT DRUG FOR THE WRONG REASON. > > In describing the FM syndrome from 1985 onwards, I have been saying > that an important feature of it was calcium phosphate deposits. The > response which I got from every single medical professional was > complete disbelief and of course for many years that included > disbelief about the existence of the syndrome. Well, after six > years, the American College of Rheumatologists formulated the > diagnosis and the rest is history. As to the deposits, the disbelief > continued. When I found out three months ago that Dr St Amand had > been working in parallel to me all that time, it was the first moment > that I knew that anyone else in the world shared my views. > > I mailed him immediately and offered to share my work with him, > because I could see from his website that he did not have the whole > picture. His description of the illness was the best I had ever > read -- in fact the only description I have ever seen that I could > endorse myself, he had realised the importance of hypoglycaemia, as I > had done myself at quite an early stage, and guaifenesin was an > improvement on the substances that I had been testing myself. > > However, his description of how guaifenesin works was clearly > flawed. For example, if I increase my dose of guaifenesin, my > clearance pains will increase as soon as the drug gets in my > bloodstream -- about 45 minutes after taking. This would be quite > impossible if the drug were working the way he says it does because > it would take many, many hours for my kidneys to lower blood > phosphate levels. I have proposed a better theory which meets all of > the problems which his theory raises, but that is all in my paper so > I won't repeat it here. He also refuses to advise magnesium > supplementation when all the evidence points to low tissue levels of > magnesium in all of the fatigue syndromes -- not just FMS. > Furthermore, magnesium has always been the standard treatment for > calcium phosphate deposits and a lot of the people who post on > message boards find that they benefit from magnesium supplementation, > so he is ignoring the experience of researchers and rheumatologists > as well as many of his own patients. Presumably, he doesn't want > guai to share the credit. > > I first heard about guaifenesin in 1994 (though unfortunately the > article didn't give any information about why it was being used) but > when I read that there was going to be a double-blind trial conducted > by Dr , who is one of the world's foremost authorities on FMS, > I decided to wait for the results. The trial was, as we all know, a > complete failure for Dr St Amand. Not a single patient got better. > Where I'm coming from is that I want to work towards getting the > calcium phosphate aspect which he and I have both been working on > independently taken seriously by the medical profession, and I do not > want the project to be put back another seven years by another failed > or inconclusive drug trial. > > Dr St Amand would dearly like his work to be accepted by > rheumatologists, but as things stand they are unlikely to be > convinced. I sent my paper to him in mid-April and I asked him for > any corrections which he would like me to make or any input which he > might have, but despite a reminder, he has not come up with > anything. Perhaps he thinks I'm right -- who knows? > > I have placed my paper in the Files section on this board - just > click on Files in the box on the left of the screen. The response > that I have received so far has been remarkably appreciative not just > about what I have to say about magnesium and guaifenesin but also > about other sections, such as Fatigue or Neuroendocrine and Vascular > Insufficiency, and this has given me the courage to expose it to some > of the eggheads that I know are denizens of this group. > > So here it is, folks. Am I right or what? If you think not, please > straighten me out. > > Best wishes to all, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 This is interesting, although I need more time to better digest it. Do you believe this applies to people with CFIDS who do not have FMS? Cindi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 In a message dated 2/3/02 3:06:24 AM !!!First Boot!!!, writes: << Thanks, . Could a doc mistake them for fatty cysts? How does one wind up w. too many phosphates- if that is not too big a question? I am totally ignorant here. Adrienne >> I'm not sure since I dont know what a fatty cyst looks/feels like. I think its very likely that a doctor who is experienced in " mapping " a person's body for phosphate lumps would be able to distinguish between the two. Typically if a person has phosphates there will be several (maybe 20-40 total?) that a doctor can feel with his fingers on the legs, arms, and back. I was never able to learn to feel these lumps in my skin; but guai definitely works wonders for some people. There's no blood test or anything for it. I remember dr St Amand found this massive one in my butt cheek and sure enough after a few days on the guai I felt it starting to break up right where he mapped it. Then by the second week my urine got this really toxic smell which lasted for a few weeks and must have been the phosphates as they were coming out. How a person winds up where they arent getting phosphates out of their system is similar to mercury in my opinion. It can be a root cause of illness or it can be the result of the body's detox being allready compromised from years of illness. Whatever the case; I think everyone with fibro and CFS; but especially fibro; should try guaifenesin since there are virtually no side effects (except the flare ups if its working) and its very cheap. Quote Link to comment Share on other sites More sharing options...
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