Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-18-2007, 04:52 PM #11
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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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Old 05-21-2007, 08:01 AM #12
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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.
How could they "prevent" RSD? How did they know that these patients would have gotten RSD?

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.
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Old 05-21-2007, 09:20 AM #13
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Hi..
I just read in the newspaper doctor's column that large doses of Vitamin C were not good for you..
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Old 05-21-2007, 10:41 AM #14
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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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Old 05-21-2007, 11:01 AM #15
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Hi..
I just read in the newspaper doctor's column that large doses of Vitamin C were not good for you..
Lillyblossom
I beg to differ. That is so untrue. Here is an article for you to consider, as I think that doctor's claims are wrong. Please read the following article, and look up "Linus Pauling".

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Vitamin C, Linus Pauling was right all along. A doctor's opinion

Here is an article written by Dr Hilary Roberts about Linus Pauling and his views on vitamin C.

It is the 10th anniversary of the death of Linus Pauling and his most controversial scientific conjectures about the health benefits of vitamin C are being confirmed. The weight of evidence may yet force the medical establishment to accept his ideas on nutrition and health.

Linus Pauling's claim, that he knew a cure for heart disease, cancer and infections, was greeted with ridicule. His remarkable health claims concerned the substance we know as vitamin C. Now, ten years after his death on 19th August 1994, his revolutionary ideas are finally on the way to vindication. Given his history, it should not surprise us if Pauling was right all along. He was, after all, the leading chemist of the last century and, arguably, the greatest ever American scientist. He remains the only person to have won two unshared Nobel Prizes, the first for Chemistry (1954) and the second for peace (1962). In addition to being one of the greatest scientists ever, he was a renowned humanitarian.

By the time of his death, the medical establishment had branded Pauling a quack, because he advocated the use of high doses of vitamin C to treat many diseases. Irwin Stone first introduced Pauling to vitamin C, and explained that it wasn't really a vitamin at all, but an essential substance we could no longer manufacture in our bodies. Most animals make their own vitamin C, in large amounts. In humans, the gene for this ability has mutated and no longer works properly.

When Pauling looked into Stone's claims, he found that conventional medicine had long ignored evidence from respected physicians and scientists. This research suggested that high doses of vitamin C might be a cure for many illnesses, including cancer and heart disease. However, when he explained these findings in his wonderfully constructed books "Vitamin C and the Common Cold" and "How to Live Longer and Feel Better", the medical profession was incensed, implying that a mere chemist could not possibly understand the intricacies of medical science.

If Pauling was correct, vitamin C could help overcome the major killers in the industrialised world. This sounded so unlikely that a lesser scientist making the claim would probably have been ignored; the medical world had already disregarded similar reports of vitamin C. Linus Pauling had a reputation for being 20 years ahead of other scientists.

He may well have been years ahead in other fields but, in medicine, the insiders considered such a thing to be impossible. Pauling battled with the medical authorities and convinced a lot of the public of the benefits of high dose vitamin C. He took on the medical establishment because the implication for health was enormous: an end to premature death and unnecessary suffering from heart disease, infection and many cancers.

Since Pauling's death, the medical establishment has reclaimed the scientific position with a series of experiments on vitamin C. In particular, the NIH measured the distribution of vitamin C in the body and claimed that Pauling was wrong about the need for high doses, as the blood could be saturated at low doses [Proc. Natl. Acad. Sci. USA, 93, 3704-9.]. They added that doses higher than one gram were potentially dangerous. From this point on, the high dose vitamin C lobby were on the defensive.

If the body could be saturated at low doses, the argument went, higher doses were simply a waste or even potentially dangerous. However, clinical reports of the utility of high dose vitamin C had been repeated in the literature for over 50 years. These reports continued, particularly in the fields of heart disease, infections and cancer, contradicting the NIH conclusions. Either the clinical reports of the efficacy of high doses were incorrect, or the NIH experimental work was flawed.

Taking note of this inconsistency, Drs Steve Hickey and Hilary Roberts decided to investigate the data for a book ("Ascorbate, the science of vitamin C", www.lulu.com/ascorbate). They began by looking at the apparently ludicrous claims for the medical effects of vitamin C. Pauling had stated that the substance could cure cancer and that shortage was the major cause of heart disease. Among his many scientific advances, Pauling had made occasional errors: perhaps he had done the same with vitamin C. If he was wrong, his hypotheses should be easy to refute.

When they examined the evidence, Hickey and Roberts found background evidence for Pauling's ideas from independent scientific and medical reports, covering half a century. The findings in these papers could neither be dismissed as placebo effects nor easily explained. The reports included remission of AIDS, cures for cancer, and the immediate recovery of children at the point of death from septic shock. The claims seemed so out of the ordinary that they were hard to believe. However, Hickey and Roberts could find no counter examples in the scientific or medical literature.

If these positive reports were indeed wrong, no-one had shown this to be true. The scientific evidence was consistent with Pauling's ideas, with a few notable exceptions. The primary exception was the NIH data on blood and tissue saturation. The medical establishment accepted the NIH conclusions and held them in the highest regard. The US Institute of Medicine had based their official recommended dietary allowance (RDA) on these results. If the NIH was correct, then Pauling was wrong and the positive reports of high doses must be invalid.

The NIH conclusions were not correct, however. Hickey and Roberts examined their experiments and found them to be full of errors. For example, the researchers had given a dose of vitamin C, waited until it had been excreted and then measured blood levels. Using this procedure, they found that increasing the dose did not greatly increase the blood levels. Instead of realising that this was because the dose had been excreted, the NIH claimed it was because the body was saturated, so higher doses were redundant. They then used white blood cells as a model for normal cells, to see how they absorbed vitamin C from their surroundings. These white blood cells are specialised to absorb vitamin C, even when supplies are low. If other body cells were similar to white blood cells, we would normally have a reserve of 40 grams in our bodies. In this case, given the proposed RDA of 200mg, it would take 2-3 years to fill a depleted body. This is demonstrably incorrect: the classic example is that James Lind's sailors recovered from scurvy in a matter of days when they were given citrus fruits containing small amounts of vitamin C.

These mistakes were gross and unsupportable. In order to check their re-interpretation of the data, Hickey sent emails to the NIH, the Institute of Medicine and every scientist he could contact who was associated with the RDA, asking them to provide a reasonable scientific response to these errors. No-one was able to provide such a response. Since it is normal scientific practice to explain and defend your ideas, the hypothesis that people only need small amounts of vitamin C looks increasingly shaky.

Even the NIH's subsequent data contradicts their earlier work. The NIH vitamin C group published a series of papers on vitamin C and cancer [Ann Intern Med, 140(7), 533-7.]. In these papers, they suggested that repeated doses of oral vitamin C would produce blood levels of at least 220 microM (a measure of the concentration) , which is three times greater than the 70 microM maximum "saturated" value they claimed in their RDA papers. While their own papers clearly showed that their low-dose claims were wrong, the NIH appeared not to notice. Instead, they suggested that intravenous doses could produce higher blood levels, which might be effective against cancer. Even though their data were coming closer to Pauling's findings on the use of vitamin C in cancer, the NIH took the opportunity to mount another attack on Linus Pauling, suggesting he did not know the difference between oral and intravenous (IV) vitamin C.

Pauling had performed a series of trials with Dr Ewan Cameron, a Scottish cancer specialist, showing that intravenous vitamin C allowed cancer patients to live much longer than expected. Numerous other studies confirmed this effect, particularly the work of Dr Abram Hoffer and Dr Hugh Riordan. The Mayo Clinic tried to refute this research but failed, as they used low, oral doses, making their results invalid. In their own cancer paper, the NIH researchers claimed that Pauling and Cameron's use of the IV route was "serendipitous", implying that Pauling did not know the difference between injected and oral doses. In fact, Pauling had written explicitly about this difference, so the NIH criticism was misplaced.

A new scientific theory, called the dynamic flow model, explains all the observed responses to vitamin C in the literature. This model is described in the book "Ascorbate", mentioned above. According to the model, people should ideally be in a state of dynamic flow, which means they should ingest more vitamin C than they need, in the form of divided dose supplements. The extra ascorbate flows through the body and is excreted in the urine. It is not wasted, however, as the excess acts as a reservoir when extra vitamin C is required. Dynamic flow is the closest we humans can get to restoring our physiology to how it was before we lost the ability to make vitamin C in our bodies, as most other animals still do.

It is difficult to imagine what Linus Pauling would have made of all this had he lived. Hickey and Roberts like to think that he would have pointed out the NIH errors earlier. He might have had fun explaining that the NIH could not perform a simple experiment, yet tried to blame him for the deficiencies in the Mayo Clinic's research. It is now 10 years since Pauling's death. Biologist Ren� Dubos suggested that the mainstream converges with Pauling twenty years later. If so, we only have another decade to wait until the medical establishment can admit that Pauling was right all along.

Dr. Hilary Roberts
Email: radicalascorbate@yahoo.com
http://www.medicalnewstoday.com/medi...p?newsid=12154

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!
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Old 05-21-2007, 12:34 PM #16
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How could they "prevent" RSD? How did they know that these patients would have gotten RSD?

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?
Hi Vanessa,

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

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Old 05-21-2007, 01:29 PM #17
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Default 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.

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Old 05-21-2007, 09:01 PM #18
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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

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Old 05-21-2007, 10:14 PM #19
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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
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Old 05-22-2007, 03:36 AM #20
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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.
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