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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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It is speculated that injury, illness, infection, stress, hormones or a combination of these can trigger RSD; but once it takes hold, the trigger does not really matter unless it is perpetuating the illness.
For my daughter, Sarah, there was absolutely an injury that brought about her RSD diagnosis (as was the case with Roz). Sarah was one of the “lucky” ones who received a prompt diagnosis, amazingly within 10 days of an ankle sprain. Her bone scan showed “textbook” RSD and her symptoms were very typical. Although it does not appear to be a concern for Sarah, as is the case with most illnesses, misdiagnosis is always a possibility; thus making research all the more essential. Of concern, however, is that she has an underlying infection that allowed her to develop RSD and is keeping her from fully recuperating. Sarah has benefited immensely from hyperbaric oxygen treatments, but her RSD returns when treatments are discontinued. Treatment with hyperbaric oxygen has been used successfully in treating anaerobic infections and is recognized for such by The Journal of American Medicine. Lyme Disease is caused by an infection of the spirochete Borrelia burgdorferi. The B. burgdorferi spirochete is an anaerobic bacterium, meaning that the organism cannot exist in oxygen. Still, killing off the infection entirely is very difficult to accomplish. Some have found benefit in using antibiotics along with hyperbarics, an approach we have not tried. All of us should be concerned about the overuse of antibiotics, and I AM IN NO WAY PROMOTING THE MARSHALL PROTOCOL. Still, it is very interesting that antibiotics are stopping the pain for some who suffer with chronic pain syndromes. Sarah’s doctor is an M.D., as well as a naturopath. She is being tested for Lyme Disease; but no matter the results of those tests, he believes that infection is involved. He is not proposing the use of lots of antibiotics but is investigating a naturopathic protocol for Lyme. Mike, you are quite obviously a very bright and informed participant on this forum; and I am very interested in your opinions and research. I must admit that when I read that you had been diagnosed with sarcoidosis (thankfully that has resolved) that you might want to consider the possibility that the bacteria that has been seen in sarcoidosis and chronic pain sufferers could be affecting you. As the mom of a 17-year-old daughter with RSD, I cannot sit back and wait until published studies are provided. It is likely that infection is not involved in all RSD, and maybe that is why some with RSD do not respond to hyperbarics? I pray that we all continue to seek answers. Jeanne |
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Dear Jeanne -
I apologize if my hokum remark came across as insensitive. (In the back of my mind, I suppose I was worried that it might: which means it probably was.) I'm sorry. And I was frankly unaware that HBOT relied on an active infection model for its usefulness in treating CRPS. Speaking of which, there's a good article on HBOT written for the general reader by one Patricia McAdams on the RSDSA website, which you can link to here: http://www.rsds.org/3/research/hbot_mcadamshtm.htm. The article cites Allan Spiegel, M.D., a neurologist who explains the likely mechanism of action as follows: Spiegel says that HBOT supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, HBOT has a tendency to constrict vessels by about 15 percent, which causes a decrease in swelling from the edema present in most people with CRPS.In fact, I have heard it speculated that HBOT works by actually forcing oxygen into the brain itself. And I must have painted with too broad a brush if I suggested that I won't move off Square One unless presented with a double-blind controlled study. In preparing the article I did last year on RUL ECT as a possible treatment for CRPS, it became all too obvious how difficult (and expensive) it is to put together human studies that meet that standards of a major medical center's institutional review board. Still, that doesn't mean that doctors shouldn't try to move the ball forward for the benefit of not just their own, but all patients, when they have the opportunity to do so. Even a good case report in a peer-reviewed journal can be of enormous help to others. This said, I suppose still I have a personal bias to disclose. My grandfather was an endocrinologist at the Mayo Clinic and was involved in a lot of the major public controversies in medicine of his day, from being perhaps the first high-profile doc in the country* to publicly support the concept of just pulling the plug on terminally ill patients in intractable pain - a radical idea for the Fifties on account of which he was actually barred from speaking at some medical schools - to writing against the food faddists of the late sixties, who claimed without any hard evidence that you could cure this condition or that with this sort of oil, etc. (Claims that were generally advanced without anything approaching a double-blind study, even in circumstances where putting together such a study wouldn't have been at all expensive.) In any event, after he retired he wrote a book he called "Americans Love Hogwash," and then through contacts secured the services of a top literary agent to peddle the book. Unfortunately, as funny and well supported as the manuscript was - or at least I thought so - the agent had to report his complete failure in securing a publisher after a couple of months of effort. Turned out that in the eyes of the publishing houses, general readers didn't want to shell out their time and money for a book only to be disabused of their hopes and dreams. And as another aside, my wife and I are no longer seeing eye-to-eye on any number of things, that comes down to the same basic thing, whether or not it serves any purpose to believe in something just because everyone else does. (In the interest of keeping what friends I've got, I'll spare you the details.) Now, as noted, there is a role for case reports in this world. Heck, my article on ECT consisted mostly in stringing maybe 50 of them together. But generally, you should expect to see them followed up with at least a small controlled study maybe three or four years later, unless where there's a reason why you can't do a double blind study: as in the case of ECT where I understand that everyone wakes up from the general anesthetic knowing whether or not they've been zapped. But I have seen over the last few years a good number of guys with proprietary interest in the positions they assert, having dozens of - generally unpublished - papers they've written on their websites, each of which just happens to circle back to the same tired old case report, if that. (True.) Most good academic MDs that I know would have no problem, if the evidence changed, to abandon positions they had publicly exposed for years. (Reminds me of a couple of years ago, when a scientist at a symposia tried to trip up the Dalai Lama by asking him what he would do if science unequivocally disproved a major tenant of Buddhism, to which the monk responded, then Buddhism would have to be adjusted accordingly.) On the other hand, there are lots of folks out there who are so wedded to seeing their practice area as a series of marketing niches, not to be lightly disturbed. Some of the latter may practice out strip malls; others may be full boat professors at major private universities. (In the words of an old joke, we’ve already established what they are; now we’re just dickering over the price.) In any case, may we all be delivered from the hands of these learned men and women. And may your daughter soon overcome the burden of this monster. Mike * By his own description – coming equipped with an outrageous sense of humor - he was "World's Greatest Doctor." And he proved it. On three occasions, traveling abroad to three different continents, he addressed and mailed a post card to "World's Greatest Doctor, World's Greatest Clinic, World's Greatest Country." And on each time, the card made it's way to his desk! (With the help, of course, of the folks in the mailroom, who knew whose joke it was.) Last edited by fmichael; 03-01-2009 at 04:22 AM. |
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I appreciate your position on this and in consideration of your comments regarding your grandfathers book, of which I would be highly interested in reading, I draw you attention to an excerpt from a blog published on Dr. Russell Blaylock's website entitled "Regimentation in Medicine and the Death of Creativity" Dr. Blaylock is a neurosurgeon, author and lecturer, here he speaks directly about the state of modern medicine, a very interesting read. As much of the discussion on the forum has been focused on the possible link between viruses and RSD I thought this excerpt about the case of Dr. Barry Marshall and Dr. Robin Warren who discovered the virus that causes ulcers brings the point home. Quote:
On a personal note I'm very happy to see the tone and nature of this thread is providing a respectful platform for open discussion and learning. Thank you all for your thought provoking contributions. MsL |
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Dear Mike,
We are mates, never ever forget because I never ever will. I just want you to be out of the pain that is beyond any charts. You know I really care, we go back to many years. YOU ARE VERY DEAR TO ME. Love, Roz xoxo |
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"Thanks for this!" says: | fmichael (03-01-2009) |
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Thanks for sharing Dr Baylock's comments. There is a huge controversy in the Lyme Disease community and it is well presented in the documentary "UNDER OUR SKIN" It is a must see. One of the researchers mentioned is Dr. McDonald. I can't post links but check out some of his posts at these addresses (below). He has identified the Lyme bacteria in 7 out of the 10 Alzheimers brains he has tested. He has also observed Lyme biofilns in what he says provides proof of concept for chronic Lyme. Gene ** ** ** ** Also, great article by Amy on biofilms ** |
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"Thanks for this!" says: | buckwheat (03-01-2009) |
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http://www.snagfilms.com/films/watch/under_our_skin/
Dear ED, My blood work is low on Vitamin D and B, how in the world could the M/P HELP ME???? The M/P is not for everyone. Roz Last edited by buckwheat; 03-01-2009 at 07:14 PM. |
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Senior Member
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Dear MsL,
I am going through Dr. Blylock's website, and under the Blylock Wellness Report," came to a page entitled "Why Haven't You Been Told About the REAL Cause of Heart Attacks?" at http://w3.newsmax.com/blaylock/22a.cfm and it's scarry stuff: basically you have a guy trained as a neurosurgeon, issueing histerical polemics against statins, and dismissing the thousands of papers that have found them to be of service, because "corrrelation does not equal causality." (Yes, but that's what advanced statistical theory is all about, something that I suspect have been applied to many of the studies he simply dismisses out of hand.) But the big point I wanted to make is that the guy is apparently using his site to market a proprietary "Wellness Report": Find out even more of the surprising truth about Coronary Disease, Strokes and Cholesterol — and many other issues affecting your health . . .You'll forgive me. The man come across as a scientist. More like someone you would find peddling snake oil. Ever here that great Tom Wait's song, Step Right Up? Mike |
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"Thanks for this!" says: | fmichael (03-02-2009) |
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I'm not a doctor, a scientist nor an academic. I am however a patient like many here who has been failed by modern medicine as it is currently being practiced by the majority of physicians. I have not read any of Dr Blaylock's work on statins so I can not comment on his research methods, nor do I think that is relevant to the topic at hand, that is rsd, and what is the underlying reason some of us are predisposed to this disease? What I believe is more relevant to the conversation is that Dr. Blaylock has done some very important research on the effects of excitotoxins on the human body. This work should not be dismissed so easily, especially for those of us with rsd who are hypersensitive to many chemicals. Case in point an article of his that has been published in JANA the Journal of American Nutraceutical Association, a peer-reviewed journal on nutraceuticals and nutrition discusses an extensive review of literature on neurodegeneration in his article titled "New Developments in the Prevention and Treatment of Neurodegenerative Diseases Using Nutraceuticals and Metabolic Stimulants". Have a look at the section that discusses Inflammation, Cytokines and Autoimmunity where he describes " As we see, glutamate itself can act as a trigger for microglia activation leading to the release of numerous inflammatory cytokines, or some other event may trigger the process, such as a viral infection, Lymes disease organism invasion, or even heavy metal exposure." http://www.ana-jana.org/reprints/JAN...ockarticle.pdf Personally I would never sign up and pay for a newsletter advertised in such a manner. I see where you are coming from with your comments. Upon further research into Dr. Blaylocks published accomplishments I see that he has taken a position on many conditions that fly in the face of most of modern medicines mainstream beliefs. I suspect he has been ostracised and ridiculed from the medical profession much like Dr. Barry Marshall and Dr. Robin Warren were for taking the views that he does. In my mind however and especially after reading the attached newsletter (no I did not pay for it)titled "Inflammation: The Real Cause of Diseases", I admire and applaud his courage and commitment to speaking his mind on this very subject. http://w3.newsmax.com/newsletters/bl...une2008_48.pdf "CRPS/RSD is characterized in the acute stage by symptoms of regional inflammation. This inflammatory response is also seen in the rodent chronic nerve constriction injury model that is produced by loose ligation of the sciatic nerve. Inflammation could be caused by cellular hypoxia and diminished oxygen utilization. In the chronic stage, CRPS/RSD is manifested as a more neuropathy-like disorder. It has been hypothesized that this alteration results from the development of sensitization or plasticity during the early inflammation phase of the disorder." http://grants1.nih.gov/grants/guide/...AS-03-120.html Yes perhaps I too am stringing things together here, for the past few months now, since my surgery I have been researching the role of inflammation and how it affects my rsd. I have implemented and now follow an anti-inflammatory diet, introduced neutraceuticals, improved my exercise regime, and done much of what Dr Blaylock has recommended in his newsletter on Inflammation prior to reading it yesterday. I for one feel much better since I have changed my lifestyle, my rsd symptoms have decreased substantially. Personally I believe there is good value in what he has researched and written about here. Many of his recommendations make good sense to me and I think much of it can help to improve the lives of those of us inflicted by this nasty monster. If I have stepped up to the front of the line of the snake oil salesman than so be it! MsL |
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#10 | ||
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Junior Member
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Dear ED,
My blood work is low on Vitamin D and B, how in the world could the M/P HELP ME???? The M/P is not for everyone. Roz Hi Roz, The CDC recently reported that 90,000,000 people in the US suffer from chronic disease. MEDCO the nation’s largest prescription supplier reported that in 2007 for the first time over half of its subscribed customers were taking a prescription drug. The biggest increases, they report, are in children under 19 years old. For over 50 years we have been supplementing vitamin D in food and vitamins. Where is the benefit!!! The vitamin D council say we just aren’t taking enough and must take more!!! Maybe it is time to ask them to prove it and explain the metabolic pathways that show the claimed benefits and don’t fall back on subjective epidemiological correlations ripe with confounding factors. . Vitamin D is not a vitamin. By definition a vitamin is a required nutrient that can’t be made by the body. This is not the case for vitamin D. Vitamin D is actually a seco-steroid with the active hormone being 1,25-D made in the kidneys and passed to the blood to the cellular vitamin D nuclear receptor (VDR). The VDR is responsible for transcribing over 900 genes many of which are important to the innate immune system such as the antimicrobial peptides. Marshall proposes that the current idea that low vitamin D is the cause for disease disregards the alternative hypothesis that it is the disease that is causing low vitamin D assay values. The disease being, intracellular bacterial infection by cell wall deficient bacteria and their associated biofilms. |
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