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SYMPTOM MIGRATION: My Story
About ten years ago I began taking the antioxidant grape seed extract (GSE) in the hope that it would prevent, or at least delay the onset of symptom migration, and for ten years it appears to have done exactly what I hoped: I have not had any new RSD symptoms anywhere in my body.
Since some people never experience symptom migration this could just be my good luck, and if this is all I have to show that GSE actually works I might as well not say anything. There is more, however, and I hope that after reading the rest of this post you will decided its worth $10.00 a month to protect yourself from this awful complication. There is scientific support for antioxidant protection from symptom migration, but that support is based on RSD as a disorder called ischemia-reperfusion injury (IRI), and NOT the result of nerve damage. During my nearly ten years at BrainTalk I wrote thousands of words explaining that nerves don’t do what RSD “experts” tell us they are doing. They really can’t. After explaining why this can’t result from nerve damage I wrote about IRI and how it also begins with a physical trauma. I wrote about how IRI explains every sign and symptom of RSD, explaining exactly how it produces all three types of RSD pain; lower skin temperature; patchy osteoporosis; diminished hair and nail growth, and how it explains the one RSD sign the “experts” never talk about: Cyanosis. I described the IRI process in detail, including the role of oxidants called oxygen free radicals (OFRs) in this disease. I said that physicians apply the topical antioxidant vitamin E to surgical wounds in order to prevent IRI from developing, and this is what led me to begin taking the oral antioxidant GSE. In other words, I offered a scientifically sound rationale for delaying symptom migration that would only be valid if this really is an IRI. But I can’t prove RSD is IRI, so why should you pay any attention to this post? Because of the story I’m about to tell you, the story of my experiences while taking, and then not taking GSE. I think its a compelling story and hope you agree. As I said, I began taking GSE about ten years ago (a few months after the RSD spread from my left to my right foot), and have not experienced any new symptom migration; I have however, come close a couple times. After taking 100mg of GSE every day for about two years, I noticed that about once a month the inside of my left wrist would turn bright pink and burn like a sunburn. I began to apply the topical antioxidant DMSO to the area three times a day, and after about three days the inflammation would subside. I kept up this routine for more than a year and then got the bright idea that since the DMSO controlled the inflammation I could just use it a couple days a month and not have to spend any money on GSE. I stopped taking it and waited to see what would happen next. I didn’t have to wait long: In just a few days both arms and both legs were bright pink and burned like a moderate sunburn. I realized the GSE had been doing a lot more than just protecting my wrist, and was scared to death that my now red, warm skin was about to turn into the cool skin and cyanosis of full-body RSD. I began taking GSE again: 300mg daily now. I also smeared DMSO over my arms and legs five times a day. It took only two days for the inflammation to subside; I had been spared from a major disaster. If I had had any doubt that the GSE was worth the money, it was gone forever. There is absolutely no explanation for the sudden onset of inflammation in both arms and both legs (exactly what happens in first stage RSD), except that the GSE had been preventing it. I had never had any such inflammation before RSD; have you? RSD “experts” might say that the inflammation was a sort of reverse placebo effect: that I believed the GSE was helping and when I stopped taking it my mind caused the inflammation to begin. Maybe, but I’ll keep taking GSE anyway. Anyway, a “reverse placebo effect” can’t explain what happened next: About five years ago I went into a very long emotional crisis; so severe that I decided my only answer was suicide. Not just suicide, however; I wanted to die in a very specific place, the place where I had proved to myself that I had the courage to die. Long story short: I could only drive about 150 miles a day and this place is more than 1800 miles away. I had to get the money to make the trip and plan it very carefully. All of this took time. During this time I guess I forgot to take my GSE regularly. One morning I woke up and both arms and both legs were bright pink and burned. I had to drive 50 miles to buy DMSO, and of course began popping GSE like crazy. After a couple of days the inflammation subsided again. I also realized that ending my life wasn’t my only option after all. I could have looked at the inflammation and decided I wasn’t gonna make it to Chiapas and just tucked a .22 under my chin, but instead I drove 50 miles to buy DMSO. That’s the sign of a man who wants to live. Like I said, “reverse placebo effect” doesn’t fit this last scenario: I didn’t know I had forgotten to take the GSE, so its hard to imagine my mind tricking my body into becoming inflamed again. That’s my story. If BT hadn’t crashed I could post all the stuff I wrote there, but nobody really read it there anyway. The bottom line is that when someone tells you a story like the one you just read, you need to give it some very serious thought. I can’t guarantee that taking GSE will delay symptom migration. I can tell you that only one person who reported taking GSE later reported suffering symptom migration, while lots of people who don’t take it post about new symptoms all the time. I guess we can’t know for sure unless everyone here believes me and begins taking GSE. I know I’d like to know for sure. Finally, as I wrote the line “...lots of people who don’t take it post about new symptoms all the time”, I realized that I have let a lot of people down. A lot of “newbies” never had a chance to read my story. I guess everyone will have to get used to seeing this thread “bumped” a lot; like once a month…Vic |
I got some of the GSE and am experimenting with it. My symptoms have been a little better the last few days and I don't want to complicate things with anything new.
I'm afraid it's about ready to spread into my heart so intend to stay on top of it. |
Hi Vic,
I remember you from about 3 years ago on another board. I always enjoyed your posts. Something happened & I couldn't find that aboard again. Anyways, you convinced me to start taking GSE & I have been for over 3 years. I hate to report, but my RSD has spread from my hand to my legs. Good news is that, so far, I haven't had the severity that I originally had in my hand. Maybe, would have been worse had I not taken the GSE. I had recently wondered whether I should continue it or not, but now that I've heard another convincing story from you, I will. Thanks, Linmarie |
Hi Vic,
Thanks for posting that. Must it be GSE? Wouldn't any heavy-duty antioxidant be just as good or do you think that grape seed extract specifically is what has made the difference with you? all the best :) |
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Thanks! |
Hi Vic!! I am new, I don't know why you would say you let a lot of newbies down?? Vic, I am so glad you posted this about the grapseed. I am going to give this a try. where do I get this?? on line? at my local herbal health store?? thanks, Vic! Love, Desi:)
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It's online and in stores - Grape seed extract- you might check on our vitamin & supplement forum for best brands & prices.
here- http://neurotalk.psychcentral.com/forumdisplay.php?f=49 |
i don't know if grapeseed extract has any properties that aren't in other antioxidants, but it is the most effective antioxidant widely available....pycnogenol is almost as good, but about 3 times as expensive....i get my GSE at walmart.
i'm one of the people vic talks about when he mentions good results....my rsd started with my left arm, then my right arm......it was many years before i started having problems with my feet, and i think it was the GSE that slowed down the progression....or possibly prevented progression, since the neuro, pain doc and family doc have opposing views on just what's wrong with my feet....peripheral neuropathy unrelated to rsd, erythomelalgia, nerve compression, or rsd spread - take your pick. maybe vic is right, and it's a coincidence that he takes GSE and has had no spread......but it's a heck of a coincidence that both of us take it and r doing better than many. |
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As I've said elsewhere, GSE here in HK is mucho expensivo, so I take as much antioxidants and free radical scavenger-carrying food and drink (tea) as I can. I assumed it would do the job in the same way...but since I know Vic isn't a GSE salesman yet pushes GSE so hard, I'm now wondering if he reckons there is something specific in GSE not found in anything else? all the best. |
Thanks for sharing your story with us newbies. The way I see it, I have everything to gain and nothing to lose by trying it. And, when you consider the horrid side effects from the meds they give us for this monster...why not give it a go...Thanks Jeannie
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Hi everyone,
Sorry to take so long to reply but my social life has been so demanding, what with parties, bars and loose women chasing me...anyway, I'm here now. Imahotep; I've done a fair amount of reading about antioxidants in general and GSE specifically and haven't found one report about adverse reactions, drug interactions or overdose, so don't think GSE will complicate anything. Also, we see lots of commercials advertising everything from bottled water to hair dyes containing antioxidants; a lot of this antioxidant stuff is hype, reaching out to people who want to look 20 when they're 80 or have unlimited erections, but it does have real beneficial effects besides slowing symptom migration, so taking it daily will probably help in ways we will never learn. Linmarie; I notice that I never spoke about my attitude about symptom migration, but the bottom line is that it scares the Hell out of me. I don't think I'd be willing to live with pain throughout my body; that I'd probably decide its too much for me. When I suddenly developed inflammation in all four limbs, my response was immediate and massive: I jumped from 100mg to 300mg of GSE daily and smeared DMSO everywhere five times a day. The DMSO left me with flu-like symptoms, but I knew I would rather feel sick than have full body RSD. If that hadn't worked I would have increased the GSE even more and smeared DMSO ten times a day. I would do whatever was necessary to stop what was happening to me, and I would begin just as soon as I noticed anything that even seems like new symptoms. The only weapons that I know of are antioxidants, so I would keep increasing dosages until I won or lost. Artist; I think an I.V. antioxidant would probably be much better: our gut is loaded with OFRs and other reactive oxygens that help break down food molecules, so lots of the GSE is neutralized before they ever reach the body. The problem is that no one has a clue about appropriate dosages or intervals, so a lot of experimenting would be necessary; experiments that will never be undertaken. Liz (coachV) gave the most logical answer to your question. I started using GSE because it was what Wal-Mart sold. I read what I could about it and learned that the little information available reported it to be safe and effective so I kept buying it. Had Wal-Mart only sold pycnogonel, I would probably be pushing that. It boils down to: If it works, don't fix it. Shaman, a former BrainTalk Forum member, argued that the antioxidants in natural foods were enough to do the job, and I agree that they can help but once I was persuaded that antioxidants might delay symptom migration it seemed wisest to me to supplement what we normally eat. Since much of my diet consists of chocolate chip cookies and Hershey's Kisses, a supplement is probably best for me. IHH; GSE is an antioxidant while vitamins C and E contain antioxidants. There was an article in Lancet describing how vitamin C prevented RSD in a study of wrist fractures, so there is support for this view. I didn't think much of the study design or their projected numbers, so I never cite it in my posts. Anyway, I'm a bottom line kind of guy, and the bottom line for me is that I feel safer paying about $10.00 per month and being confident I'm doing all I can. Desi; I get my GSE at General Nutrition Centers (GNC): a 100 count bottle of 300mg capsules is about $27.00, and thats as cheap as I've found anywhere. You have to buy a discount card ($15.00 per year) and can only buy it at this price during the first week of the month, but I can live with that. BTW: I let a lot of people down because I took so long to write this thread. I know GSE helps but I kept it my secret. used to be; my point exactly. Liz; Of course your neuro, pain doc and family doc have different views; everybody seems to have a view. It would be nice if some doc would take the time to compare RSD symptoms with diseases that weren't discovered until after RSD. If anyone, besides me, did that, the answer would be obvious and we could talk about something else...Vic |
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I am not questioning you, Vicc, rather their study... er, it's confusing me, because I have no idea how they would've known that these patients would be the ones that would've developed RSD... Maybe someone could explain that? Or their study? Vicc, could you please give me the name of the study so that I can read it? Thanks. I certainly understand your reasoning for using the GSE. Can you tell me if you know if it interacts with any drugs? Speaking of herbs/ supplements interacting with drugs, does anyone know of a website or such to find out those types of interactions? Thanks. :winky: |
Hi..
I just read in the newspaper doctor's column that large doses of Vitamin C were not good for you.. Lillyblossom |
IHH,
I have some interaction checkers up in the stickys. Medications /Interaction checkers and Pill Identification links http://neurotalk.psychcentral.com/sh...0&postcount=19 copied - hope the links work- http://www.healthsquare.com/drugmain.htm http://www.drugs.com/ http://gsm.about.com/interact/inter.asp http://www.healthatoz.com/healthatoz...drugSearch.jsp http://www.drugdigest.org/DD/Interac...,4109,,00.html But I can't remember which one includes vits & supplements - I'm sure at least one of them does. __________________ |
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I have found that doses of vitamins is usually low, and have read quite a bit on the topic. Since RSD my body has needed more vitamin C, and I regularly take 16,000- 20,000 a day with no adverse side effects (no diarhea)!! Obviously, my body is starving for the vitamin it so needs, and it is more proof that my immune system is not functioning correctly. When you are taking too high of a dose of vitamin c your body will excrete it via diarhea. You should take the highest dose possible without having diarhea. I highly recommend Linus Pauling's books, called "Vitamin C and the Common Cold" and "How to Live Longer and Feel Better" Hope this helps someone! :winky: |
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Just to give you a quickish answer. Usually when they do these studies they pick a group of people who are likely to contract RSD. Who are they? you might ask, and the answer is "Me!" (for one). I'm still outraged that they know perfectly well that people who break their arm with a Colles fracture (the most common type of arm break) have a - statistics vary - 7 to 35% chance of ending up with RSD. The figure most often quoted is 28%. That is enormously high...did anyone warn me? Of course not. But I noticed that the orthos who diagnosed RSD, following my Colles fracture, were sad for me and unsurprised.... Knee injuries have a high risk of leading to RSD too. So, they perform studies on groups of people with injuries statistically shown to lead to higher incidences of RSD. The one I remember immediately was in the UK (Dr. Andrew McBride in the UK at the the Bristol Royal Infirmary in 2003) on the efficacy of using vitamin C. They gave the Colles fracture people huge clinical amounts (via an IV) of vitamin C when they performed surgery to reset the bones, followed by large doses for a while after. Here's a BBC story on it, from 2003, you need to scroll down - there are better refs, I just happened to find this link: http://news.bbc.co.uk/2/hi/health/3383965.stm and a more recent one: http://crps-rsd-a-better-life.blogsp...-possible.html In this study far less people with a Colles fracture developed RSD following the injury than the people who hadn't had the whopping vitamin treatment. There is another far better known study using vitamin E - sorry, can't remember the details of where and when...maybe the Dutch? Vic will know. Here's another link to Vitamin C research: http://www.rsdfoundation.org/en/Prev...RSD_Intro.html Again scroll down, or Find "Vitamin C". I seem to remember, though, that they all concluded that it takes giant clinical amounts in IV form to make the difference. So, unfortunately, it seems a closely-guarded secret that they can make some predictions as to who might develop RSD. Also, despite the evidence, there aren't many places routinely giving this vitamin treatment to people in the "high risk" groups at the time of the initial injury. Makes you weep, doesn't it! Of course, no one can say who *will* get RSD, but in the world of research statistics are about the only truly convincing way of doing it. Just wanted to get this off while I thought of it, sorry I haven't time to give you more refs, but the info is all out there... all the best :) |
mega vitamin C = trouble
http://www.cantonrep.com/index.php?I...subCategoryID=http://www.cantonrep.com/index.php?I...subCategoryID=
FAMILY DOCTOR: High vitamin C doses may harm more than help Thursday, May 17, 2007 PETER GOTT, M.D. UNITED MEDIA Q: I am a 78-year-old male who has been taking a daily dose of 400 IU of vitamin C for so long that I have forgotten why I take it. My wife's doctor recently told her to stop taking vitamin C, for it does nothing for her, and recent studies indicate that it could contribute to a heart problem. She is 77 years old and we are both in relatively good health. I would appreciate your opinion. A: The endorsement of high-dose vitamin C by Dr. Linus Pauling years ago has not worked out. Although the vitamin is vital for normal metabolism, huge doses do not protect against colds, cancer and other ailments; in fact, such megadoses can cause heart problems. I recommend that you continue vitamin C therapy at a lesser dosage, such as 200 IU per day, a level that will not harm you. Your wife's doctor might suggest the same compromise if she wishes to continue the vitamin supplement. Lillyblossom :) |
Hi Lillyblossom,
I'm sorry to say that link you posted won't really cut it - it appears all over the net in many different publications - it's a syndicated "dear doctor" letter, with *no details* whatsoever to back it up - and putting MD after your name means diddlysquat, we still need the references he got his information from. I put "daily dose of 400 IU of vitamin C for so long that I have forgotten why I take it" into google, which came up with at least 100 identical inclusions on many different sites. Doesn't mean it's correct, though ;) - it might be, but one would need more backup references to judge that. Many of us here like to have citations (details and dates of research publications) if possible, when discussing these kind of specifics, since the net has so much rubbish and questionable material on it (I mean, anyone can write anything, ya know?) Here is a good link for Vitamin C research: http://www.vitamincfoundation.org/ As you'll see, it lists lots of stuff, some positive, some negative, but it certainly shows that Vitamin C seems helpful in treating some types of cancer. And also, here: http://www.brightspot.org/cresearch/index.shtml As far as Vitamin C regarding RSD goes, I put some links in my previous post in this thread. As you'll see, there is no doubt that the research is going in a very interesting direction, especially when you open up the topic to antioxidants in general. Happy reading! all the best :) |
Hi,
I have no druthers if any of you want to take 10,000 mgs of vitiman C daily....I'm just giving you a heads-up alert of what I have recently read about in Dr Gott's column in our recent newspaper. I wanted you to ck into it....since the MD study you speak of, took place in 1994, and the guy has been dead for 17 years. Do a search on the web of "Harmfulness of mega doses of vitiman C" and see what most articles say about the link between high doses of vitiman C + heart disease. My own cardiologist has warned me to not add any vitiman C or herbal supplements to my long list of meds. I know why the herbal are not allowed...but guess when I'm in there next time, I'll ask about the vitiman C reason....as it may be interesting to know. I hope I don't sound mean.... as I'm not trying to be...but just trying to save you some $$, and the possibility of another nasty illness called heart disease "CAD"....you all already have enough problems with the RSD . But hey , if you feel it works for you...by all means take it. Take care, Lillyblossom:) |
Re Antioxidants and crps
Hi I've been interested in antioxidants and how they could help sufferers of crps. There have been further studies about vitamin C for prevention of crps post wrist fractures. The dose recommended dose was increased from 500mg to 1 gram. If you are interested email me at oceanshores8@hotmail.com and I'll give you the link to my blog which has links to research about more recent studies and also a British group is now looking at vitamin C as a treatment for crps. Dr Scott Reuben in the USA has developed protocols for the prevention of crps post orthopeadic surgery, dental work and tissue trauma. I recieved an email from him saying they have now included 1 gram of vitamin C in their protocols. It was Dr Reuben who told me about the later research. My interest is because I had a colles wrist fracture about 2 years before they did the research.
Google Scott Reuben vitamin C for more infor or check my blog. Now I wish to draw to your attention the way antioxidats work. Vitamin C is the antioxidant of focus for crps as it is the antioxidant that demolishes inflamation causing free radicals. However Antioxidants give and electron to a free radical making it safe but in so doing they themselves become a free radical. In the case of vitamin C, it gives an electron to a free radical and becomes a vitamin C free radical. If you consume a range of free radical you set up a balanced giving and taking of electrons so that you don't end up with eg a lot of vitamin C free radicals which is not a good thing. I hope I'm explain this well enough. My opinion is that it is smart to increase antioxidants in diet by eating smart. You can actually have 1 gram of vitamin C in your diet by choosing foods wisely. Some food are super foods providing much higher antioxidant nutrients than others. I've developed an "eat smart" plan. It's on my blog with links to research etc. I've been helped by a dietition and "world's healthiest foods" website in the USA among others. I hope this helps you. I think you are all very wise for many reasoons to look at this topic. jeisea |
Hi Lillyblossom,
Yes, there is a lot of negative stuff on the net regarding vitamin C, but there's more positive stuff ;) Seems like the topic has as as many people rooting for it as against it, lol! But Pauling's research and reputation are definitely making a comeback (he was in the science dog-house for a while, as the excellent article posted by IHH explains) as more specific research is being done regarding antioxidants in general. Pauling won the Nobel prize twice, he should be worth taking seriously... and hey, Einstein's dead too, but that doesn't negate the work he did. That's the point, really, that the research he did all those years ago, that was refuted by others later, is now being completely re-evaluated. Anyway, like you say, each to his own. Hi Jeisea! Welcome! I'm in total agreement with you, specially about "eating smart" - I figure since I have to eat, might as well get food that'll do something positive. Many thanks for the info and yes, please give us the blog link, I'd be really interested in reading it, thank you! all the best :) |
Thanks, Artist for your posts in this thread! ;)
Lillyblossom, I certainly wasn't trying to start a problem, only point out that that is a fallacy about taking "too much vitamin c". I just thought I would point out the wonderful research done by Linus Pauling. Too much vitamin c is a joke. It is water soluble, and the worst thing that can happen (as far as I know) is you'll keep running to the bathroom! Eating healthy is a great way to aid your body, as Artist and Jeisea (welcome, btw!) pointed out. But sometimes, with illnesses such as this, your body also needs supplements. I am a big fan of the least medication possible that helps, healthy eating and supplements. Speaking of eating well, Dr Hooshmand has a diet called the "Four F's" which is supposed to help RSD patients. I haven't done it totally yet, but I am working towards eating that way. I'll let you know if it helps. Have a blessed day! :hug: |
"newbie"
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Vic,
I was just re-reading this post & remembered that I read what you wrote on BT. That is why I started taking GSE. I know I printed out some of the things that you wrote. I've moved so don't know if I still have it, but if I find it, I'll let you know. I've upped my GSE from 100 or 200 mg per day to 300. Can't hurt, can it? Linmarie |
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