Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 hi Rich - > As you can see from the above posts, I'm back in a more active status > on the list. I've missed participating quite a lot. I've spent the > past few months working on a chapter on nutrition for a new book on > CFS that will hopefully come out this winter. nice to see you back!! and good to hear about the new book. Thanks for the info on magnesium - the big question is, of course, how to fix it but I'm betting you'll come up with an answer one of these days. Judith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 how much magnisum and arginine should we take? --- vankonynenburg1@... wrote: > Hi, everyone. > > As you can see from the above posts, I'm back in a > more active status > on the list. I've missed participating quite a lot. > I've spent the > past few months working on a chapter on nutrition > for a new book on > CFS that will hopefully come out this winter. I've > signed away the > copyright, so I can't give you the manuscript > verbatim, but I will be > sharing some of the high points of what I've > learned. I reviewed over > 200 references. It turned out to be a much bigger > literature than I > realized. I think I have a new insight on what's > going on with > magnesium. As you know, both PWCs and PWFs have > found benefit from > fairly high magnesium intake, orally and by > injection. The > measurements of magnesium status in CFS, however, > have been equivocal. > Some find low Mg, and some don't. It's not easy to > accurately > evaluate Mg status with a simple test. People have > claimed that the Mg > loading test (aka Mg challenge, or Mg tolerance > test) is the way to > go, but it relies on the kidneys treating Mg > properly. The idea > is that you inject a big dose of magnesium, and then > collect urine > for a day, and see how much of it is dumped. If a > lot is > retained, the conclusion is that the person was low > in magnesium, > and vice versa. I've always been suspicious of this > test in CFS. Now > I think I understand what's going on. It's been > found (2 papers) that > PWCs are low in arginine vasopressin (antidiuretic > hormone). This > produces a state of partial diabetes insipidus. > It's responsible for > the constant thirst, high water intake, and high > daily urine volume. > I think it also contributes to the NMH and POTS > problems in CFS. > > O.K., here's the new insight: It's been found in > rats that low > arginine vasopressin, beside causing a lot of water > loss in urine, > also causes major losses of magnesium in urine > (calcium too, by the > way). Furthermore, in children with bedwetting > problems, it's been > found that the magnesium loss is high, and both the > bedwetting and the > Mg loss were corrected with a synthetic form of > arginine vasopressin > (a Russian paper). > > So, I think this means that the magnesium loading > test is not valid in > PWCs, that they are low in Mg because they are > dumping too much of it > into the urine, and that this results from low > arginine vasopressin. > > Now, how do you fix that? Sorry, I don't know that > yet. I think the > low arginine vasopressin is a result of hypothalamus > problems, and I > don't think they are fully understood yet. I think > Dr. Cheney has > suggested that they are due to toxins that cross the > barrier into the > hypothalamus from the blood. There are also other > possibilities. > This is an area of active research, and hopefully > progress will be > made, but at least I think it's possible to make > sense out of all the > funny results that have appeared on Mg in CFS. > > Rich > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 , The safe upper limit of magnesium supplementation from the Institute of Medicine is 350 mg per day. However, this is based on avoiding diarrhea, and the dose that produces diarrhea is different for different people, and it also depends on the form of magnesium taken. The best form seems to be magnesium glycinate. So long as you don't have kidney failure, there's no problem with taking more magnesium than 350 mg, if you don't get diarrhea. If you get diarrhea, you have to back off. I think it is wise to balance the magnesium with calcium, at about 700 mg per day or so, and also to take about 30 mg per day of zinc. Otherwise, taking a lot of magnesium can interfere with absorbing enough of these other minerals, and you need them, too. It's also important to say that if you urinate a lot per day, your magnesium needs will probably be higher. If you don't urinate a lot, you probably don't need as much magnesium. I would have to know more details about your case to be able to say how much magnesium you might need. Concerning arginine, I don't think you can raise your arginine vasopressin secretion simply by taking more arginine. Arginine is just one amino acid in the whole molecule. I think the problem is more involved than that. Rich > > Hi, everyone. > > > > As you can see from the above posts, I'm back in a > > more active status > > on the list. I've missed participating quite a lot. > > I've spent the > > past few months working on a chapter on nutrition > > for a new book on > > CFS that will hopefully come out this winter. I've > > signed away the > > copyright, so I can't give you the manuscript > > verbatim, but I will be > > sharing some of the high points of what I've > > learned. I reviewed over > > 200 references. It turned out to be a much bigger > > literature than I > > realized. I think I have a new insight on what's > > going on with > > magnesium. As you know, both PWCs and PWFs have > > found benefit from > > fairly high magnesium intake, orally and by > > injection. The > > measurements of magnesium status in CFS, however, > > have been equivocal. > > Some find low Mg, and some don't. It's not easy to > > accurately > > evaluate Mg status with a simple test. People have > > claimed that the Mg > > loading test (aka Mg challenge, or Mg tolerance > > test) is the way to > > go, but it relies on the kidneys treating Mg > > properly. The idea > > is that you inject a big dose of magnesium, and then > > collect urine > > for a day, and see how much of it is dumped. If a > > lot is > > retained, the conclusion is that the person was low > > in magnesium, > > and vice versa. I've always been suspicious of this > > test in CFS. Now > > I think I understand what's going on. It's been > > found (2 papers) that > > PWCs are low in arginine vasopressin (antidiuretic > > hormone). This > > produces a state of partial diabetes insipidus. > > It's responsible for > > the constant thirst, high water intake, and high > > daily urine volume. > > I think it also contributes to the NMH and POTS > > problems in CFS. > > > > O.K., here's the new insight: It's been found in > > rats that low > > arginine vasopressin, beside causing a lot of water > > loss in urine, > > also causes major losses of magnesium in urine > > (calcium too, by the > > way). Furthermore, in children with bedwetting > > problems, it's been > > found that the magnesium loss is high, and both the > > bedwetting and the > > Mg loss were corrected with a synthetic form of > > arginine vasopressin > > (a Russian paper). > > > > So, I think this means that the magnesium loading > > test is not valid in > > PWCs, that they are low in Mg because they are > > dumping too much of it > > into the urine, and that this results from low > > arginine vasopressin. > > > > Now, how do you fix that? Sorry, I don't know that > > yet. I think the > > low arginine vasopressin is a result of hypothalamus > > problems, and I > > don't think they are fully understood yet. I think > > Dr. Cheney has > > suggested that they are due to toxins that cross the > > barrier into the > > hypothalamus from the blood. There are also other > > possibilities. > > This is an area of active research, and hopefully > > progress will be > > made, but at least I think it's possible to make > > sense out of all the > > funny results that have appeared on Mg in CFS. > > > > Rich > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Rich, Welcome back. I'm reluctant to write to you because you know SO much basic science and I don't, so please know I speak from a position differnt and far less sophisticated than yours. Why I write despite this is to share some information that maybe you can integrate re the magnesium loading test, which I can't quite understand in terms of what I was told and what you're suspecting. Mildred Seelig, M.D., who you've probably come across in your magnesium researches (she wrote some seminal papers on magnesium in health and disease as well as a HUGE text on the subject and in recent years actually came to see a relationship with CFS--I forget the paper though have it somewhere) treated me many years ago--way, way before CFS was a diagnosis (early 80s, and when I first fell ill with this monstrous disease). How I found her is interesting but tangential. Anyway, she had me do a mag loading test after my local doctor suspected from symptoms developed and a hair analysis (this was a fairly mainstream endocrinologist!) that I was mag deficient and he put me on mag supplementation, which relieved many of my most dramatic symptoms AS LONG AS I TOOK AND RETOOK the mag. If I stopped they came back. And it never got me recovered. She ordered the mag loading test, which he did using her formula to analyze the results of the two 24-hour urine tests before and after the mag loading. Turns out I was retaining more mag than expected, but wasn't " wasting " mag--i.e., throwing too much of it off in the urine. (Or that fact, the non-wasting, was found in another later test). A subsequent French (or Swiss) mag researcher, name of Durlach, entered the scene via my new mag oriented doctor who Seelig had me see (Seelig didn't see patients--just did research). At the time Durlach and a French guy name of Rayseuger (or something close--I have it somewhere) came to the conclusion that some people don't waste the mag by throwing it into the urine but the waste takes place at the cellular level (though I don't know how they determined it, or if they just hypothesized that that must be it). I.e., that some people's cells (they werent' working with our diagnosis) don't " hold onto " magnesium. Thus it gets absorbed thru the intestinal tract and into the cells but thrown out too quickly (here is where I'm really way beyond my knowledge limits-- just repeating what I understood of what I was told/read). However, in thinking this thru now I would wonder where that cellular mag would go if not out via the kidneys and into the urine, thus while not a kidney located mechanism of wasting but the kidneys ridding the body of intracellular mag thrown out of the cells. Does that make any sense? I stopped paying attnetion to the literature on this after a while and my ME/CFS doc who was deeply into mag could tell I was weary of hearing about it, as I was getting sicker at the time despite all the mag supplementation! I.e., the original profound and quite obvious relief oral mag supplementaiton gave me was deteriorating, even with the IM mag, which btw Seelig had started me on in the early 80s!!! In fact my food allergies became manifest AFTER that big time and my mag ME/CFS doc said that one other patient reported that. But he didn't have any ideas on it; and he was always seeing explanations for everything. I'm soon to try taurine with mag injections a la Dr. Cheney's advice as reported on this list. I've been giving myself mag injections for a long time again and also supplementing orally but haven't had any mag testing and clearly while I haven't " tested " what it would do if I stopped I fear stopping given my repeated abysmally low RBC mag #s even when supplementing and my early experience with improved symptoms. I also think I've observed help at least with sleep with mag. But the true test would involve stopping it for a while to see what if anything gets worse, which I'm currently not willing to do especially because I had kidney stones two years ago and mag is indicated for them IF they are due to calcium. I hope what I've reported is of some help to you (or others) in figuring out what I do believe to be an important part of the complex pathophysiology of this disease. If not. . . . Best, Judith Wisdom On Sat, 04 Aug 2001 00:08:18 -0000 vankonynenburg1@... writes: Hi, everyone. As you can see from the above posts, I'm back in a more active status on the list. I've missed participating quite a lot. I've spent the past few months working on a chapter on nutrition for a new book on CFS that will hopefully come out this winter. I've signed away the copyright, so I can't give you the manuscript verbatim, but I will be sharing some of the high points of what I've learned. I reviewed over 200 references. It turned out to be a much bigger literature than I realized. I think I have a new insight on what's going on with magnesium. As you know, both PWCs and PWFs have found benefit from fairly high magnesium intake, orally and by injection. The measurements of magnesium status in CFS, however, have been equivocal. Some find low Mg, and some don't. It's not easy to accurately evaluate Mg status with a simple test. People have claimed that the Mg loading test (aka Mg challenge, or Mg tolerance test) is the way to go, but it relies on the kidneys treating Mg properly. The idea is that you inject a big dose of magnesium, and then collect urine for a day, and see how much of it is dumped. If a lot is retained, the conclusion is that the person was low in magnesium, and vice versa. I've always been suspicious of this test in CFS. Now I think I understand what's going on. It's been found (2 papers) that PWCs are low in arginine vasopressin (antidiuretic hormone). This produces a state of partial diabetes insipidus. It's responsible for the constant thirst, high water intake, and high daily urine volume. I think it also contributes to the NMH and POTS problems in CFS. O.K., here's the new insight: It's been found in rats that low arginine vasopressin, beside causing a lot of water loss in urine, also causes major losses of magnesium in urine (calcium too, by the way). Furthermore, in children with bedwetting problems, it's been found that the magnesium loss is high, and both the bedwetting and the Mg loss were corrected with a synthetic form of arginine vasopressin (a Russian paper). So, I think this means that the magnesium loading test is not valid in PWCs, that they are low in Mg because they are dumping too much of it into the urine, and that this results from low arginine vasopressin. Now, how do you fix that? Sorry, I don't know that yet. I think the low arginine vasopressin is a result of hypothalamus problems, and I don't think they are fully understood yet. I think Dr. Cheney has suggested that they are due to toxins that cross the barrier into the hypothalamus from the blood. There are also other possibilities. This is an area of active research, and hopefully progress will be made, but at least I think it's possible to make sense out of all the funny results that have appeared on Mg in CFS. Rich 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Rich, I've found that 1000 mgs of taurine a day helped with my excessive thirst and urination. My doctor said it's used in " an antidiuretic hormone. " This is what you're talking about? Any thoughts about the taurine? I also get good amounts of mag in IV's, so perhaps the 2 together helped me. This is interesting stuff. welcome back. Re: I'm back, and I think I understand magnesium in CFS better. , The safe upper limit of magnesium supplementation from the Institute of Medicine is 350 mg per day. However, this is based on avoiding diarrhea, and the dose that produces diarrhea is different for different people, and it also depends on the form of magnesium taken. The best form seems to be magnesium glycinate. So long as you don't have kidney failure, there's no problem with taking more magnesium than 350 mg, if you don't get diarrhea. If you get diarrhea, you have to back off. I think it is wise to balance the magnesium with calcium, at about 700 mg per day or so, and also to take about 30 mg per day of zinc. Otherwise, taking a lot of magnesium can interfere with absorbing enough of these other minerals, and you need them, too. It's also important to say that if you urinate a lot per day, your magnesium needs will probably be higher. If you don't urinate a lot, you probably don't need as much magnesium. I would have to know more details about your case to be able to say how much magnesium you might need. Concerning arginine, I don't think you can raise your arginine vasopressin secretion simply by taking more arginine. Arginine is just one amino acid in the whole molecule. I think the problem is more involved than that. Rich > > Hi, everyone. > > > > As you can see from the above posts, I'm back in a > > more active status > > on the list. I've missed participating quite a lot. > > I've spent the > > past few months working on a chapter on nutrition > > for a new book on > > CFS that will hopefully come out this winter. I've > > signed away the > > copyright, so I can't give you the manuscript > > verbatim, but I will be > > sharing some of the high points of what I've > > learned. I reviewed over > > 200 references. It turned out to be a much bigger > > literature than I > > realized. I think I have a new insight on what's > > going on with > > magnesium. As you know, both PWCs and PWFs have > > found benefit from > > fairly high magnesium intake, orally and by > > injection. The > > measurements of magnesium status in CFS, however, > > have been equivocal. > > Some find low Mg, and some don't. It's not easy to > > accurately > > evaluate Mg status with a simple test. People have > > claimed that the Mg > > loading test (aka Mg challenge, or Mg tolerance > > test) is the way to > > go, but it relies on the kidneys treating Mg > > properly. The idea > > is that you inject a big dose of magnesium, and then > > collect urine > > for a day, and see how much of it is dumped. If a > > lot is > > retained, the conclusion is that the person was low > > in magnesium, > > and vice versa. I've always been suspicious of this > > test in CFS. Now > > I think I understand what's going on. It's been > > found (2 papers) that > > PWCs are low in arginine vasopressin (antidiuretic > > hormone). This > > produces a state of partial diabetes insipidus. > > It's responsible for > > the constant thirst, high water intake, and high > > daily urine volume. > > I think it also contributes to the NMH and POTS > > problems in CFS. > > > > O.K., here's the new insight: It's been found in > > rats that low > > arginine vasopressin, beside causing a lot of water > > loss in urine, > > also causes major losses of magnesium in urine > > (calcium too, by the > > way). Furthermore, in children with bedwetting > > problems, it's been > > found that the magnesium loss is high, and both the > > bedwetting and the > > Mg loss were corrected with a synthetic form of > > arginine vasopressin > > (a Russian paper). > > > > So, I think this means that the magnesium loading > > test is not valid in > > PWCs, that they are low in Mg because they are > > dumping too much of it > > into the urine, and that this results from low > > arginine vasopressin. > > > > Now, how do you fix that? Sorry, I don't know that > > yet. I think the > > low arginine vasopressin is a result of hypothalamus > > problems, and I > > don't think they are fully understood yet. I think > > Dr. Cheney has > > suggested that they are due to toxins that cross the > > barrier into the > > hypothalamus from the blood. There are also other > > possibilities. > > This is an area of active research, and hopefully > > progress will be > > made, but at least I think it's possible to make > > sense out of all the > > funny results that have appeared on Mg in CFS. > > > > Rich > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Welcome back, Rich, certainly missed you. I found that I wasn't noticing any difference with a magnesium/calcium supplement, but did notice a substantial difference with a magnesium/malic acid supplement. There was a good post on the subject of abnormal water metabolism. I made a copy of it, but don't have it saved. If you can't find it, I can send you a copy. It was: Sat, 21 Jul 2001 From Bullock bullocks@... Title: Fw: [cfs_research] Subject: HHV-6, Acquired Angioedema, Arginine-VasoPressin Re: the research work done by Prof. Cocchetto, Source: www.ncf-net.org/forum/NCF seeks_researchers.html. What I found really interesting, is '...due to a deficiency of Complement C1-Esterase Inhibitor (C1-INH). He believes that HHV-6 creates this deficiency via C1-INH consumption...' It's a research paper, that discusses lots of research, but didn't provide a bibliography, some of their findings were the opposite of yours. If our water metabolism is malfunctioning either way, it could explain a lot of symptoms. Good luck with your search. I've had good results using a Cider Vinegar Diet Formula - Apple Cider Vinegar, Grapefruit, Kepl, Lecithin, B-6, Chromium and Glucomanan Fibre, and Digestive Enzymes with Bromelain, to stabilize my water metabolism. Good to have you back, Merle > > > As you can see from the above posts, I'm back in a > > > more active status > > > on the list. I've missed participating quite a lot. > > > I've spent the > > > past few months working on a chapter on nutrition > > > for a new book on > > > > I think I understand what's going on. It's been > > > found (2 papers) that > > > PWCs are low in arginine vasopressin (antidiuretic > > > hormone). This > > > Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 one lady that i went to a while back but didnt stick with her cause i hard someone got better from this other cfs doc so switched very soon which was a dumb idea but anyway that read my blood and sias to take flax oil and seeds and eletrolyes and minerals this is different from my other docs work up would any of that helped? --- vankonynenburg1@... wrote: > , > The safe upper limit of magnesium supplementation > from the Institute > of Medicine is 350 mg per day. However, this is > based on avoiding > diarrhea, and the dose that produces diarrhea is > different for > different people, and it also depends on the form of > magnesium taken. > The best form seems to be magnesium glycinate. So > long as you don't > have kidney failure, there's no problem with taking > more magnesium > than 350 mg, if you don't get diarrhea. If you get > diarrhea, you have > to back off. I think it is wise to balance the > magnesium with > calcium, at about 700 mg per day or so, and also to > take about 30 mg > per day of zinc. Otherwise, taking a lot of > magnesium can interfere > with absorbing enough of these other minerals, and > you need them, too. > It's also important to say that if you urinate a lot > per day, your > magnesium needs will probably be higher. If you > don't urinate a lot, > you probably don't need as much magnesium. I would > have to know more > details about your case to be able to say how much > magnesium you might > need. > > Concerning arginine, I don't think you can raise > your arginine > vasopressin secretion simply by taking more > arginine. Arginine is > just one amino acid in the whole molecule. I think > the problem is > more involved than that. > > Rich > > > > > > > Hi, everyone. > > > > > > As you can see from the above posts, I'm back in > a > > > more active status > > > on the list. I've missed participating quite a > lot. > > > I've spent the > > > past few months working on a chapter on > nutrition > > > for a new book on > > > CFS that will hopefully come out this winter. > I've > > > signed away the > > > copyright, so I can't give you the manuscript > > > verbatim, but I will be > > > sharing some of the high points of what I've > > > learned. I reviewed over > > > 200 references. It turned out to be a much > bigger > > > literature than I > > > realized. I think I have a new insight on > what's > > > going on with > > > magnesium. As you know, both PWCs and PWFs have > > > found benefit from > > > fairly high magnesium intake, orally and by > > > injection. The > > > measurements of magnesium status in CFS, > however, > > > have been equivocal. > > > Some find low Mg, and some don't. It's not easy > to > > > accurately > > > evaluate Mg status with a simple test. People > have > > > claimed that the Mg > > > loading test (aka Mg challenge, or Mg tolerance > > > test) is the way to > > > go, but it relies on the kidneys treating Mg > > > properly. The idea > > > is that you inject a big dose of magnesium, and > then > > > collect urine > > > for a day, and see how much of it is dumped. If > a > > > lot is > > > retained, the conclusion is that the person was > low > > > in magnesium, > > > and vice versa. I've always been suspicious of > this > > > test in CFS. Now > > > I think I understand what's going on. It's been > > > found (2 papers) that > > > PWCs are low in arginine vasopressin > (antidiuretic > > > hormone). This > > > produces a state of partial diabetes insipidus. > > > It's responsible for > > > the constant thirst, high water intake, and high > > > daily urine volume. > > > I think it also contributes to the NMH and POTS > > > problems in CFS. > > > > > > O.K., here's the new insight: It's been found > in > > > rats that low > > > arginine vasopressin, beside causing a lot of > water > > > loss in urine, > > > also causes major losses of magnesium in urine > > > (calcium too, by the > > > way). Furthermore, in children with bedwetting > > > problems, it's been > > > found that the magnesium loss is high, and both > the > > > bedwetting and the > > > Mg loss were corrected with a synthetic form of > > > arginine vasopressin > > > (a Russian paper). > > > > > > So, I think this means that the magnesium > loading > > > test is not valid in > > > PWCs, that they are low in Mg because they are > > > dumping too much of it > > > into the urine, and that this results from low > > > arginine vasopressin. > > > > > > Now, how do you fix that? Sorry, I don't know > that > > > yet. I think the > > > low arginine vasopressin is a result of > hypothalamus > > > problems, and I > > > don't think they are fully understood yet. I > think > > > Dr. Cheney has > > > suggested that they are due to toxins that cross > the > > > barrier into the > > > hypothalamus from the blood. There are also > other > > > possibilities. > > > This is an area of active research, and > hopefully > > > progress will be > > > made, but at least I think it's possible to make > > > sense out of all the > > > funny results that have appeared on Mg in CFS. > > > > > > Rich > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 one lady that i went to a while back but didnt stick with her cause i hard someone got better from this other cfs doc so switched very soon which was a dumb idea but anyway that read my blood and sias to take flax oil and seeds and eletrolyes and minerals this is different from my other docs work up would any of that helped? --- vankonynenburg1@... wrote: > , > The safe upper limit of magnesium supplementation > from the Institute > of Medicine is 350 mg per day. However, this is > based on avoiding > diarrhea, and the dose that produces diarrhea is > different for > different people, and it also depends on the form of > magnesium taken. > The best form seems to be magnesium glycinate. So > long as you don't > have kidney failure, there's no problem with taking > more magnesium > than 350 mg, if you don't get diarrhea. If you get > diarrhea, you have > to back off. I think it is wise to balance the > magnesium with > calcium, at about 700 mg per day or so, and also to > take about 30 mg > per day of zinc. Otherwise, taking a lot of > magnesium can interfere > with absorbing enough of these other minerals, and > you need them, too. > It's also important to say that if you urinate a lot > per day, your > magnesium needs will probably be higher. If you > don't urinate a lot, > you probably don't need as much magnesium. I would > have to know more > details about your case to be able to say how much > magnesium you might > need. > > Concerning arginine, I don't think you can raise > your arginine > vasopressin secretion simply by taking more > arginine. Arginine is > just one amino acid in the whole molecule. I think > the problem is > more involved than that. > > Rich > > > > > > > Hi, everyone. > > > > > > As you can see from the above posts, I'm back in > a > > > more active status > > > on the list. I've missed participating quite a > lot. > > > I've spent the > > > past few months working on a chapter on > nutrition > > > for a new book on > > > CFS that will hopefully come out this winter. > I've > > > signed away the > > > copyright, so I can't give you the manuscript > > > verbatim, but I will be > > > sharing some of the high points of what I've > > > learned. I reviewed over > > > 200 references. It turned out to be a much > bigger > > > literature than I > > > realized. I think I have a new insight on > what's > > > going on with > > > magnesium. As you know, both PWCs and PWFs have > > > found benefit from > > > fairly high magnesium intake, orally and by > > > injection. The > > > measurements of magnesium status in CFS, > however, > > > have been equivocal. > > > Some find low Mg, and some don't. It's not easy > to > > > accurately > > > evaluate Mg status with a simple test. People > have > > > claimed that the Mg > > > loading test (aka Mg challenge, or Mg tolerance > > > test) is the way to > > > go, but it relies on the kidneys treating Mg > > > properly. The idea > > > is that you inject a big dose of magnesium, and > then > > > collect urine > > > for a day, and see how much of it is dumped. If > a > > > lot is > > > retained, the conclusion is that the person was > low > > > in magnesium, > > > and vice versa. I've always been suspicious of > this > > > test in CFS. Now > > > I think I understand what's going on. It's been > > > found (2 papers) that > > > PWCs are low in arginine vasopressin > (antidiuretic > > > hormone). This > > > produces a state of partial diabetes insipidus. > > > It's responsible for > > > the constant thirst, high water intake, and high > > > daily urine volume. > > > I think it also contributes to the NMH and POTS > > > problems in CFS. > > > > > > O.K., here's the new insight: It's been found > in > > > rats that low > > > arginine vasopressin, beside causing a lot of > water > > > loss in urine, > > > also causes major losses of magnesium in urine > > > (calcium too, by the > > > way). Furthermore, in children with bedwetting > > > problems, it's been > > > found that the magnesium loss is high, and both > the > > > bedwetting and the > > > Mg loss were corrected with a synthetic form of > > > arginine vasopressin > > > (a Russian paper). > > > > > > So, I think this means that the magnesium > loading > > > test is not valid in > > > PWCs, that they are low in Mg because they are > > > dumping too much of it > > > into the urine, and that this results from low > > > arginine vasopressin. > > > > > > Now, how do you fix that? Sorry, I don't know > that > > > yet. I think the > > > low arginine vasopressin is a result of > hypothalamus > > > problems, and I > > > don't think they are fully understood yet. I > think > > > Dr. Cheney has > > > suggested that they are due to toxins that cross > the > > > barrier into the > > > hypothalamus from the blood. There are also > other > > > possibilities. > > > This is an area of active research, and > hopefully > > > progress will be > > > made, but at least I think it's possible to make > > > sense out of all the > > > funny results that have appeared on Mg in CFS. > > > > > > Rich > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 one lady that i went to a while back but didnt stick with her cause i hard someone got better from this other cfs doc so switched very soon which was a dumb idea but anyway that read my blood and sias to take flax oil and seeds and eletrolyes and minerals this is different from my other docs work up would any of that helped? --- vankonynenburg1@... wrote: > , > The safe upper limit of magnesium supplementation > from the Institute > of Medicine is 350 mg per day. However, this is > based on avoiding > diarrhea, and the dose that produces diarrhea is > different for > different people, and it also depends on the form of > magnesium taken. > The best form seems to be magnesium glycinate. So > long as you don't > have kidney failure, there's no problem with taking > more magnesium > than 350 mg, if you don't get diarrhea. If you get > diarrhea, you have > to back off. I think it is wise to balance the > magnesium with > calcium, at about 700 mg per day or so, and also to > take about 30 mg > per day of zinc. Otherwise, taking a lot of > magnesium can interfere > with absorbing enough of these other minerals, and > you need them, too. > It's also important to say that if you urinate a lot > per day, your > magnesium needs will probably be higher. If you > don't urinate a lot, > you probably don't need as much magnesium. I would > have to know more > details about your case to be able to say how much > magnesium you might > need. > > Concerning arginine, I don't think you can raise > your arginine > vasopressin secretion simply by taking more > arginine. Arginine is > just one amino acid in the whole molecule. I think > the problem is > more involved than that. > > Rich > > > > > > > Hi, everyone. > > > > > > As you can see from the above posts, I'm back in > a > > > more active status > > > on the list. I've missed participating quite a > lot. > > > I've spent the > > > past few months working on a chapter on > nutrition > > > for a new book on > > > CFS that will hopefully come out this winter. > I've > > > signed away the > > > copyright, so I can't give you the manuscript > > > verbatim, but I will be > > > sharing some of the high points of what I've > > > learned. I reviewed over > > > 200 references. It turned out to be a much > bigger > > > literature than I > > > realized. I think I have a new insight on > what's > > > going on with > > > magnesium. As you know, both PWCs and PWFs have > > > found benefit from > > > fairly high magnesium intake, orally and by > > > injection. The > > > measurements of magnesium status in CFS, > however, > > > have been equivocal. > > > Some find low Mg, and some don't. It's not easy > to > > > accurately > > > evaluate Mg status with a simple test. People > have > > > claimed that the Mg > > > loading test (aka Mg challenge, or Mg tolerance > > > test) is the way to > > > go, but it relies on the kidneys treating Mg > > > properly. The idea > > > is that you inject a big dose of magnesium, and > then > > > collect urine > > > for a day, and see how much of it is dumped. If > a > > > lot is > > > retained, the conclusion is that the person was > low > > > in magnesium, > > > and vice versa. I've always been suspicious of > this > > > test in CFS. Now > > > I think I understand what's going on. It's been > > > found (2 papers) that > > > PWCs are low in arginine vasopressin > (antidiuretic > > > hormone). This > > > produces a state of partial diabetes insipidus. > > > It's responsible for > > > the constant thirst, high water intake, and high > > > daily urine volume. > > > I think it also contributes to the NMH and POTS > > > problems in CFS. > > > > > > O.K., here's the new insight: It's been found > in > > > rats that low > > > arginine vasopressin, beside causing a lot of > water > > > loss in urine, > > > also causes major losses of magnesium in urine > > > (calcium too, by the > > > way). Furthermore, in children with bedwetting > > > problems, it's been > > > found that the magnesium loss is high, and both > the > > > bedwetting and the > > > Mg loss were corrected with a synthetic form of > > > arginine vasopressin > > > (a Russian paper). > > > > > > So, I think this means that the magnesium > loading > > > test is not valid in > > > PWCs, that they are low in Mg because they are > > > dumping too much of it > > > into the urine, and that this results from low > > > arginine vasopressin. > > > > > > Now, how do you fix that? Sorry, I don't know > that > > > yet. I think the > > > low arginine vasopressin is a result of > hypothalamus > > > problems, and I > > > don't think they are fully understood yet. I > think > > > Dr. Cheney has > > > suggested that they are due to toxins that cross > the > > > barrier into the > > > hypothalamus from the blood. There are also > other > > > possibilities. > > > This is an area of active research, and > hopefully > > > progress will be > > > made, but at least I think it's possible to make > > > sense out of all the > > > funny results that have appeared on Mg in CFS. > > > > > > Rich > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 , Thanks for the welcome back. I don't know much about taurine in connection with antidiuretic hormone. There is one abstract of a paper on rats (McBroom, 1998) on Medline in which the authors say that rats drinking a combination of taurine and salt water develop severe high sodium levels in their blood, but rats drinking either of these alone do not. They suggest that the combination interferes with the action of antidiuretic hormone in its regulation of extracellular (such as blood) fluid volume and osmolality (how concentrated it is). Your doctor sounds pretty up to speed. Rich > > > Hi, everyone. > > > > > > As you can see from the above posts, I'm back in a > > > more active status > > > on the list. I've missed participating quite a lot. > > > I've spent the > > > past few months working on a chapter on nutrition > > > for a new book on > > > CFS that will hopefully come out this winter. I've > > > signed away the > > > copyright, so I can't give you the manuscript > > > verbatim, but I will be > > > sharing some of the high points of what I've > > > learned. I reviewed over > > > 200 references. It turned out to be a much bigger > > > literature than I > > > realized. I think I have a new insight on what's > > > going on with > > > magnesium. As you know, both PWCs and PWFs have > > > found benefit from > > > fairly high magnesium intake, orally and by > > > injection. The > > > measurements of magnesium status in CFS, however, > > > have been equivocal. > > > Some find low Mg, and some don't. It's not easy to > > > accurately > > > evaluate Mg status with a simple test. People have > > > claimed that the Mg > > > loading test (aka Mg challenge, or Mg tolerance > > > test) is the way to > > > go, but it relies on the kidneys treating Mg > > > properly. The idea > > > is that you inject a big dose of magnesium, and then > > > collect urine > > > for a day, and see how much of it is dumped. If a > > > lot is > > > retained, the conclusion is that the person was low > > > in magnesium, > > > and vice versa. I've always been suspicious of this > > > test in CFS. Now > > > I think I understand what's going on. It's been > > > found (2 papers) that > > > PWCs are low in arginine vasopressin (antidiuretic > > > hormone). This > > > produces a state of partial diabetes insipidus. > > > It's responsible for > > > the constant thirst, high water intake, and high > > > daily urine volume. > > > I think it also contributes to the NMH and POTS > > > problems in CFS. > > > > > > O.K., here's the new insight: It's been found in > > > rats that low > > > arginine vasopressin, beside causing a lot of water > > > loss in urine, > > > also causes major losses of magnesium in urine > > > (calcium too, by the > > > way). Furthermore, in children with bedwetting > > > problems, it's been > > > found that the magnesium loss is high, and both the > > > bedwetting and the > > > Mg loss were corrected with a synthetic form of > > > arginine vasopressin > > > (a Russian paper). > > > > > > So, I think this means that the magnesium loading > > > test is not valid in > > > PWCs, that they are low in Mg because they are > > > dumping too much of it > > > into the urine, and that this results from low > > > arginine vasopressin. > > > > > > Now, how do you fix that? Sorry, I don't know that > > > yet. I think the > > > low arginine vasopressin is a result of hypothalamus > > > problems, and I > > > don't think they are fully understood yet. I think > > > Dr. Cheney has > > > suggested that they are due to toxins that cross the > > > barrier into the > > > hypothalamus from the blood. There are also other > > > possibilities. > > > This is an area of active research, and hopefully > > > progress will be > > > made, but at least I think it's possible to make > > > sense out of all the > > > funny results that have appeared on Mg in CFS. > > > > > > Rich > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Judith, Thanks for the information. Yes, I have read Mildred Seelig's paper, and I've also read Durlach's papers. The point I am trying to make is that the magnesium loading test does not give an accurate picture of the magnesium status in many PWCs, because their kidneys dump magnesium even though they need more than they have in their bodies. In other words, I think it is very possible that the magnesium loading test that you got, per Mildred Seelig, gave the wrong result. It usually is a very good test for most people, but I don't think it is when you have CFS. I suspect that you really were low in magnesium. That's consistent with the fact that it was beneficial to you when you supplemented it. I think that the reason why you had to keep taking it is that your kidneys continued to dump too much of it, because you were low in antidiuretic hormone. It's like pouring water in a bucket that has a hole in the bottom. If you want to keep the level up in the bucket, you have to keep on pouring. (Sorry, I don't mean to imply that you are anything like a bucket. I just get carried away!) I'm not claiming that supplementing magnesium is going to cure CFS. It's only part of the picture. I think it can help to ameliorate some of the symptoms, but it's not at the basis of the pathogenesis. The only magnesium test that I have much confidence in for PWCs is the one in which they scrape some cells from inside your mouth and examine them with a scanning electron microscope, using x-ray fluorescence analysis. As far as I know, it's only done by one lab, in City, CA, called Intracellular Diagnostics, Inc. (www.exatest.com). I'm not financially involved with them, but I think they have made the best case that their test gives magnesium levels that correspond to the levels in skeletal muscle, and I think those are the ones that count for CFS. Rich > Rich, > > Welcome back. I'm reluctant to write to you because you know SO much > basic science and I don't, so please know I speak from a position > differnt and far less sophisticated than yours. > > Why I write despite this is to share some information that maybe you can > integrate re the magnesium loading test, which I can't quite understand > in terms of what I was told and what you're suspecting. > > Mildred Seelig, M.D., who you've probably come across in your magnesium > researches (she wrote some seminal papers on magnesium in health and > disease as well as a HUGE text on the subject and in recent years > actually came to see a relationship with CFS--I forget the paper though > have it somewhere) treated me many years ago--way, way before CFS was a > diagnosis (early 80s, and when I first fell ill with this monstrous > disease). How I found her is interesting but tangential. > > Anyway, she had me do a mag loading test after my local doctor suspected > from symptoms developed and a hair analysis (this was a fairly mainstream > endocrinologist!) that I was mag deficient and he put me on mag > supplementation, which relieved many of my most dramatic symptoms AS LONG > AS I TOOK AND RETOOK the mag. If I stopped they came back. And it never > got me recovered. > > She ordered the mag loading test, which he did using her formula to > analyze the results of the two 24-hour urine tests before and after the > mag loading. > > Turns out I was retaining more mag than expected, but wasn't " wasting " > mag--i.e., throwing too much of it off in the urine. (Or that fact, the > non-wasting, was found in another later test). > > A subsequent French (or Swiss) mag researcher, name of Durlach, entered > the scene via my new mag oriented doctor who Seelig had me see (Seelig > didn't see patients--just did research). At the time Durlach and a > French guy name of Rayseuger (or something close--I have it somewhere) > came to the conclusion that some people don't waste the mag by throwing > it into the urine but the waste takes place at the cellular level (though > I don't know how they determined it, or if they just hypothesized that > that must be it). > > I.e., that some people's cells (they werent' working with our diagnosis) > don't " hold onto " magnesium. Thus it gets absorbed thru the intestinal > tract and into the cells but thrown out too quickly (here is where I'm > really way beyond my knowledge limits-- just repeating what I understood > of what I was told/read). > > However, in thinking this thru now I would wonder where that cellular mag > would go if not out via the kidneys and into the urine, thus while not a > kidney located mechanism of wasting but the kidneys ridding the body of > intracellular mag thrown out of the cells. > > Does that make any sense? > > I stopped paying attnetion to the literature on this after a while and my > ME/CFS doc who was deeply into mag could tell I was weary of hearing > about it, as I was getting sicker at the time despite all the mag > supplementation! I.e., the original profound and quite obvious relief > oral mag supplementaiton gave me was deteriorating, even with the IM mag, > which btw Seelig had started me on in the early 80s!!! > > In fact my food allergies became manifest AFTER that big time and my mag > ME/CFS doc said that one other patient reported that. But he didn't have > any ideas on it; and he was always seeing explanations for everything. > > I'm soon to try taurine with mag injections a la Dr. Cheney's advice as > reported on this list. I've been giving myself mag injections for a long > time again and also supplementing orally but haven't had any mag testing > and clearly while I haven't " tested " what it would do if I stopped I fear > stopping given my repeated abysmally low RBC mag #s even when > supplementing and my early experience with improved symptoms. > > I also think I've observed help at least with sleep with mag. But the > true test would involve stopping it for a while to see what if anything > gets worse, which I'm currently not willing to do especially because I > had kidney stones two years ago and mag is indicated for them IF they are > due to calcium. > > I hope what I've reported is of some help to you (or others) in figuring > out what I do believe to be an important part of the complex > pathophysiology of this disease. If not. . . . > > Best, > > Judith Wisdom > > On Sat, 04 Aug 2001 00:08:18 -0000 vankonynenburg1@l... writes: > Hi, everyone. > > As you can see from the above posts, I'm back in a more active status > on the list. I've missed participating quite a lot. I've spent the > past few months working on a chapter on nutrition for a new book on > CFS that will hopefully come out this winter. I've signed away the > copyright, so I can't give you the manuscript verbatim, but I will be > sharing some of the high points of what I've learned. I reviewed over > 200 references. It turned out to be a much bigger literature than I > realized. I think I have a new insight on what's going on with > magnesium. As you know, both PWCs and PWFs have found benefit from > fairly high magnesium intake, orally and by injection. The > measurements of magnesium status in CFS, however, have been equivocal. > Some find low Mg, and some don't. It's not easy to accurately > evaluate Mg status with a simple test. People have claimed that the Mg > loading test (aka Mg challenge, or Mg tolerance test) is the way to > go, but it relies on the kidneys treating Mg properly. The idea > is that you inject a big dose of magnesium, and then collect urine > for a day, and see how much of it is dumped. If a lot is > retained, the conclusion is that the person was low in magnesium, > and vice versa. I've always been suspicious of this test in CFS. Now > I think I understand what's going on. It's been found (2 papers) that > PWCs are low in arginine vasopressin (antidiuretic hormone). This > produces a state of partial diabetes insipidus. It's responsible for > the constant thirst, high water intake, and high daily urine volume. > I think it also contributes to the NMH and POTS problems in CFS. > > O.K., here's the new insight: It's been found in rats that low > arginine vasopressin, beside causing a lot of water loss in urine, > also causes major losses of magnesium in urine (calcium too, by the > way). Furthermore, in children with bedwetting problems, it's been > found that the magnesium loss is high, and both the bedwetting and the > Mg loss were corrected with a synthetic form of arginine vasopressin > (a Russian paper). > > So, I think this means that the magnesium loading test is not valid in > PWCs, that they are low in Mg because they are dumping too much of it > into the urine, and that this results from low arginine vasopressin. > > Now, how do you fix that? Sorry, I don't know that yet. I think the > low arginine vasopressin is a result of hypothalamus problems, and I > don't think they are fully understood yet. I think Dr. Cheney has > suggested that they are due to toxins that cross the barrier into the > hypothalamus from the blood. There are also other possibilities. > This is an area of active research, and hopefully progress will be > made, but at least I think it's possible to make sense out of all the > funny results that have appeared on Mg in CFS. > > Rich > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Merle, Thanks for the welcome and the information. I'll try to track down that post. Always happy to hear that somebody comes up with opposite findings from mine! Differences are what makes the scientific world go 'round! That's an interesting combination of things that you're taking. Glad it helps. Not sure I understand it all, though! Rich > Welcome back, Rich, certainly missed you. > > I found that I wasn't noticing any difference with a magnesium/calcium supplement, but did notice a substantial difference with a magnesium/malic acid supplement. > > There was a good post on the subject of abnormal water metabolism. I made a copy of it, but don't have it saved. If you can't find it, I can send you a copy. > > It was: > Sat, 21 Jul 2001 > From Bullock bullocks@g... > Title: Fw: [cfs_research] > Subject: HHV-6, Acquired Angioedema, Arginine-VasoPressin > Re: the research work done by Prof. Cocchetto, > Source: www.ncf-net.org/forum/NCF seeks_researchers.html. > > What I found really interesting, is '...due to a deficiency of Complement C1-Esterase Inhibitor (C1-INH). He believes that HHV-6 creates this deficiency via C1-INH consumption...' > > It's a research paper, that discusses lots of research, but didn't provide a bibliography, some of their findings were the opposite of yours. If our water metabolism is malfunctioning either way, > it could explain a lot of symptoms. Good luck with your search. > > I've had good results using a Cider Vinegar Diet Formula - Apple Cider Vinegar, Grapefruit, Kepl, Lecithin, B-6, Chromium and Glucomanan Fibre, and Digestive Enzymes with Bromelain, to stabilize > my water metabolism. > > Good to have you back, > Merle > > > > > As you can see from the above posts, I'm back in a > > > > more active status > > > > on the list. I've missed participating quite a lot. > > > > I've spent the > > > > past few months working on a chapter on nutrition > > > > for a new book on > > > > > > I think I understand what's going on. It's been > > > > found (2 papers) that > > > > PWCs are low in arginine vasopressin (antidiuretic > > > > hormone). This > > > > > > Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 , Nuts are a good source of magnesium. So are " minerals, " which usually include magnesium. I don't know the details of your case, so I can't say whether they would have helped you or not. A while back, I sent you a set of questions to try to learn more about your case. I never heard back from you on them, so maybe it was just too long a list. If so, I understand. But if you still have them, and feel like sending me answers to them, I might be able to answer your questions better in the future. If you don't still have them, and would like me to send them again, I will. Rich > > > > Hi, everyone. > > > > > > > > As you can see from the above posts, I'm back in > > a > > > > more active status > > > > on the list. I've missed participating quite a > > lot. > > > > I've spent the > > > > past few months working on a chapter on > > nutrition > > > > for a new book on > > > > CFS that will hopefully come out this winter. > > I've > > > > signed away the > > > > copyright, so I can't give you the manuscript > > > > verbatim, but I will be > > > > sharing some of the high points of what I've > > > > learned. I reviewed over > > > > 200 references. It turned out to be a much > > bigger > > > > literature than I > > > > realized. I think I have a new insight on > > what's > > > > going on with > > > > magnesium. As you know, both PWCs and PWFs have > > > > found benefit from > > > > fairly high magnesium intake, orally and by > > > > injection. The > > > > measurements of magnesium status in CFS, > > however, > > > > have been equivocal. > > > > Some find low Mg, and some don't. It's not easy > > to > > > > accurately > > > > evaluate Mg status with a simple test. People > > have > > > > claimed that the Mg > > > > loading test (aka Mg challenge, or Mg tolerance > > > > test) is the way to > > > > go, but it relies on the kidneys treating Mg > > > > properly. The idea > > > > is that you inject a big dose of magnesium, and > > then > > > > collect urine > > > > for a day, and see how much of it is dumped. If > > a > > > > lot is > > > > retained, the conclusion is that the person was > > low > > > > in magnesium, > > > > and vice versa. I've always been suspicious of > > this > > > > test in CFS. Now > > > > I think I understand what's going on. It's been > > > > found (2 papers) that > > > > PWCs are low in arginine vasopressin > > (antidiuretic > > > > hormone). This > > > > produces a state of partial diabetes insipidus. > > > > It's responsible for > > > > the constant thirst, high water intake, and high > > > > daily urine volume. > > > > I think it also contributes to the NMH and POTS > > > > problems in CFS. > > > > > > > > O.K., here's the new insight: It's been found > > in > > > > rats that low > > > > arginine vasopressin, beside causing a lot of > > water > > > > loss in urine, > > > > also causes major losses of magnesium in urine > > > > (calcium too, by the > > > > way). Furthermore, in children with bedwetting > > > > problems, it's been > > > > found that the magnesium loss is high, and both > > the > > > > bedwetting and the > > > > Mg loss were corrected with a synthetic form of > > > > arginine vasopressin > > > > (a Russian paper). > > > > > > > > So, I think this means that the magnesium > > loading > > > > test is not valid in > > > > PWCs, that they are low in Mg because they are > > > > dumping too much of it > > > > into the urine, and that this results from low > > > > arginine vasopressin. > > > > > > > > Now, how do you fix that? Sorry, I don't know > > that > > > > yet. I think the > > > > low arginine vasopressin is a result of > > hypothalamus > > > > problems, and I > > > > don't think they are fully understood yet. I > > think > > > > Dr. Cheney has > > > > suggested that they are due to toxins that cross > > the > > > > barrier into the > > > > hypothalamus from the blood. There are also > > other > > > > possibilities. > > > > This is an area of active research, and > > hopefully > > > > progress will be > > > > made, but at least I think it's possible to make > > > > sense out of all the > > > > funny results that have appeared on Mg in CFS. > > > > > > > > Rich > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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