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Infection connection -- please research!
I BELIEVE THAT IT WOULD SERVE US ALL WELL TO CONSIDER AN INFECTION CONNECTION IN RSD, BE IT LYMES OR ANOTHER BACTERIAL OR VIRAL COMPONENT. FINDING RESEARCH ABOUT RSD IS EXTREMELY LIMITING, BUT IF WE ARE WILLING TO EXPAND OUR THINKING TO INCLUDE SIMILAR ILLNESSES (FIBRIMYALGIA, CHRONIC FATIGUE, AND LYMES TO NAME A FEW), THE COMMONALITIES ARE SIGNIFICANT AND MAY JUST PROVIDE MUCH NEEDED INSIGHT INTO THIS TRAGIC SUFFERING.
I EXTRACTED THE FOLLOWING FROM A DOCUMENT. IF YOU WOULD LIKE TO READ IT IN ITS ENTIRITY, YOU CAN GOOGLE: THE MARSHALL PROTOCOL FOR TREATING CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA: HOPEFUL RESULTS EMERGING I AM NOT PROMOTING THIS PROTOCOL BUT AM ENCOURAGED TO LEARN THAT CHRONIC PAIN RELIEF IS BEING REALIZED WITH ANTIBIOTIC TREATMENTS. ALSO, IF YOU TAKE THE TIME TO GOOGLE LYMES MISDIAGNOSED, YOU WILL DISCOVER MUCH TO CONSIDER. I PRAY THAT THE MANY BRILLIANT MINDS WHO VISIT THIS FORUM WILL PULL TOGETHER AND INVESTIGATE THIS CONSIDERATION. JEANNE Quote:
http://www.prohealth.com/library/sho...784&t=CFIDS_FM |
Hi Jenno,
What I am trying to understand on this is:
IF RSD is caused by an infection then does this throw injuries out the window and therefore anyone fighting for WC or trying to sue a Dr. for surgery gone worng goes out the window too? I'm not saying what you are saying isn't right but it sure would hurt a lot of lawsuits the way it sounds if it turns out this way. Ada |
if I may throw something into the mix as a parent and wife of guys with chronic illness....
sometimes illness can manifest with symptoms very similar to another illness, but not both have necessarily the same cause nor even be the same disease/disorder. I know of many examples where patients were misdx because their symptoms "fit" a particular illness. However when further tested it was found their illness was caused by a different agent, and yes, in some cases infection (eg strep, mycoplasma, lyme and other microbial agents) We have a young girl we know whohas been ill since very young. She was first dx with epilepsy and then Multiple Sclerosis....but it turns out she has Lyme disease as well as untreated strep (something known as PANDAS) Once correct treatment starts, (although in some cases much damage done by prior wrong/no treatment) yet improvement begins I know very little about RSD...except to deeply sympathize with the pain that you all suffer :grouphug: but could it not be possible that there is more than one cause for the symptoms that manifest in CRPS? and the possibility that some may be misdx. For those that have a clear "trigger" point of an injury, surgery, blood draw etc it seems something related to that set the disease in motion. Similarly the damage caused by untreated infection can cause a malfunction. so all I am saying is it doesnt have to be *only* one or the other cause because it isnt always necessarily the same illness that manifests with similar symptoms |
Dear Jeanne,
Thanks so much for taking the time to research this article, it really gives everyone of us something to think about. We need solutions to our RSD DX.. This article could very well help people. Much Love, Roz |
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Some peoples lives are really at stack here. Much Love, Roz |
I just saw this thread in the index...
As luck would have it, this article in a very recent Science News discusses mitochondrial damage as a source of chronic illness. http://www.sciencenews.org/view/feat...ndria_Gone_Bad Quote:
The mitochondria in our cells are basically similar and actually derived FROM bacteria. So agents that KILL bacteria, may kill our mitochondria too. example: http://www.autism.com/medical/resear...ntibiotics.htm There already is a supplement made by Dr. Bruce Ames who studies mito deterioration as a cause of aging: Juvenon http://www.bruceames.org/ I think it is more likely that RSD is closer to mito damage than is to sarcoidosis. The treatment the Marshall Protocol uses is a angiotensin receptor antagonist like Benicar (also used to lower blood pressure). This protocol also requires very low intake of Vit D...and that alarms me since Vit D is showing anticancer, and antidepressant and many other positive effects for people. I have seen many fibro patients on this and another forum improve when Vit D levels were normalized from very low. This implies to me that using the Marshall Protocol for fibro would not be a good idea. This protocol remains very controversial among doctors still. Please read the mito article at the beginning of this post, and look at the diagram included. It makes it easier to visualize how this chemistry works. |
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Thanks so much for your knowledge. But don't you think a serious pathogen in the body can effect cell to cell signaling? Much Love, Roz |
Yes, Roz. The cell to cell signals are mediated by Cytokines.
These are short range hormonelike substances. Thromboxane initiates platelet actions during trauma. Leukotrienes initiate the release of histamine from mast cells and signal the immune system to fight invaders. There are families of these substances. PGE1s, PGE2s, PGE3s, etc. All with certain functions. The Series One type are for homeostatis, and the Series 2 type are mostly for inflammation and response to trauma and stress, the Threes, are mixed. There a just an amazing array of others. The body favors PGE1s on a daily basis IF and only IF certain nutrients are available to make them. This is Omega-3 territory, alpha linolenic acid, from nuts and seeds..like flax. The Omega-6 fats come from plants also, and favor making the PGE2s. When the diet is too low in Omega-3, then we don't do well...we get stuck in the inflammatory side and that causes inflammation, blood clots, allergies etc. So a balance is needed. So far using DRUGS on this system has brought some failures. Cox-2 inhibitors which block PGE2 inflammation and arthritis pain, fail and Vioxx actually killed people because one of the PGE2 cytokines is a vasodilating agent..the body uses in trauma (swelling), but also keeps our coronary heart arteries open. Singulair which blocks leukotrienes and reduces allergy, and asthma, will also fail to signal when bacteria get out of control in the lungs, and the result may be pneumonia and death. NSAIDs like ibuprofen work in the short term for swelling for pain, but if taken for over 6 wks in a row, they actually block healing PGE2s that we need for tissue repair. (they are good and bad both). In the end, it is balance we need. Our bodies will balance if we provide them with the proper nutrients. So far drugs for these systems have not worked very well. Bacteria stimulate the release of many cytokines so our bodies will survive. Leukotrienes to motivate white cells, and PGE2s for swelling (increasing blood flow) of the area. |
Dear Mrs. D,
I hope your day is so full of love because you are truly a blessings to soo many of us. I just want to thank you from the bottom of my heart, for making the time to help us. Much Love, Roz |
I'm sorry to be getting in late on this one, but the Marshall Protocol has been around these boards for a very long time, and I have yet to see any published studies (controlled or not) on it's efficacy. So I am inclined to think of it as hocum.
And as to mitochondrial damage, yes we know it causes ulcers. There are an incredible number of studes going on right now. PubMed lists 11,293, but when you add Complex Regional Pain or CRPS to the search, you get a big fat O. I do not want to offend anyone, but it is my considered view, for what it's worth, is that you guys are going off half cocked on this one, without support in the peer reviewed literature. Search PubMed, and then if you indeed find something, get the article and then we can have a more informed discussion. Now, to answer Ada's question, it's my understanding that the researchers who are looking at infections as having a relationships wuth CRPS/RSD are doing so only as a predisposing factor, a setting of the stage if you'll have it. In legal terms, the subsequent injury becomes the "proximate cause" of the CRPS. See, Vosburg v. Putney, 80 Wis. 523, 50 N.W. 403 (Wisc. 1891) (stating the now well-settled proposition that the tortfeasor must take his victim as he finds him; that is, the mere fact that the plaintiff is more susceptible to injury does not mitigate the tortfeasor's liability). http://en.wikipedia.org/wiki/Vosburg_v._Putney To then going on to Jeanne's inquiry, it's my personal and relatively uniformed view that how infections potentially predispose us to CRPS will in the end have little role in actual treatment, where many but not all of these links show historic antibodies but no trace of active infections: IgG v. IgM. My sense is that, at least in the chronic stage, CRPS while showing up in the small-fiber axonal nerve degeneration in the extremities* is maintained in the brain, and while the brain does itself produce a cascade of cytokines, it's not in response to a specific infectious agent. Rather, part of the basic process of neurimmunology. But what drives chronic or "cold" cases of CRPS are disturbance in the basic structures of the brain itself. ** And that's what any truly effective therapies must address. Mike * “Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy),” Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y, Gott R Pain 2006; 120: 235-243, free full text at http://www.rsds.org/2/library/articl..._pain_2006.pdf ** See, e.g., “The brain in chronic CRPS pain: abnormal gray-white matter interactions in emotional and autonomic regions," Geha PY et al., Neuron, 2008 Nov 26;60(4): 570-81 at 575: Regional gray matter density comparison indicated atrophy within a single cluster for the whole group of CRPS. The same brain region or portions of the same cluster exhibited atrophy even after subdividing the group by age or by laterality of CRPS pain. Hence, the atrophy spanning AI [anterior insula], VMPFC [right ventromedial prefrontal cortex], and NAc [nucleus accumbens] seems a robust result in CRPS and is right hemisphere dominant. Moreover, this atrophy was related to the two fundamental clinical characteristics of CRPS, duration and intensity, which impacted the density of this cluster above and beyond normal aging. When the cluster was subdivided into separate anatomical regions, the right AI correlated with duration of CRPS pain. The insula is the brain structure most often observed activated in acute pain tasks (Apkarian et al., 2005). In CRPS patients, bilateral AI activity correlates with ratings of touch-induced pain (allodynia) and pin-prick hyperalgesia (Maihofner et al., 2005, 2006). Moreover, recent human brain imaging studies, consistent with the older literature regarding the role of the insula as a viscerosensory cortex (Craig, 2002; Saper, 2002), highlight the role of the right AI in the representation of autonomic and visceral responses (Critchley, 2005). Patients with pure autonomic failure due to peripheral disruption of autonomic responses exhibit reduced right AI activity (Critchley et al., 2001) and atrophy in right AI (Critchley et al., 2003a). In healthy subjects, neural activity in right AI predicts subjects’ accuracy in heartbeat detection, while local gray matter volume, at coordinates closely approximating the center of the cluster we observed atrophied in our CRPS patients, correlates with subjective ratings of visceral awareness (Critchley et al., 2004). Furthermore, by comparing brain activity and autonomic responses in a fear conditioning task between healthy subjects and pure autonomic failure patients, Critchley and colleagues conclude that the right AI is involved in emotional representations, ‘‘wherein ‘feelings’ are the integration of both the mapping of internal arousal and conscious awareness of emotional stimuli’’ (Critchley et al., 2002). Given that CRPS patients are presumed to be in a constant negative emotional state and exhibit multiple signs of abnormal autonomic function, atrophy of right AI in CRPS corroborates the above studies and suggests that central anatomical abnormalities may explain fundamental symptoms of CRPS.PMID: 19038215 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/sites/entrez I will be happy to email a copy of the full text article to anyone who wants it. (Personal, non-commercial use only please.) Just drop me a PM with your email address. Thanks. |
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Mike, On a serious note, are you aware that inflammation and infection go together? Hugs, Roz |
Dear Roz -
I believe that infection may be a sufficient but not a necessary cause of inflamation, if that's what you're asking. Mike ps Signing out to run some errands: my wife driving. |
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So in your opinion, why do you have inflammation? Hugs, Roz |
"Hocum" or Not!
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 |
Th1 Intracellular bacterial infections chronic illness
Hi all,
I am a new member and have read some posts in this thread. I started my research 10 years ago when I was diagnosed with sarcoidosis. I understand the feeling of despair of chronically ill people and feel the pain of the very sick people on this site. . I have been treating my sarc with the Marshall Protocol (MP) for three years and have had significant improvement. I expect a complete cure in the next year or two. It is actually the reactivated innate immune system that kills the intracellular bacteria infection. The low dose pulsed antibiotics are bacteriostatic protein inhibitors that block the 70S bacterial ribosome from making the proteins that they use to protect themselves from the Host immune system. The MP is not easy, requires discipline, and must be approached slowly to avoid the immunopathology associated with the toxins released with the die off of infected cells. Marshall is not selling anything. You must work with you own doctor to prescribe the medications. Members of the Autoimmune Research Foundation have presented the MP science at several international medical/science/genomic conferences in the past two years. Links to transcripts and videos can be found at the MP study site. Two peer reviewed papers discussing the MP science have just been published. Three more will appear in an April publication. Here is a link (below) to the first two along with an article by Amy Proal who is recovering from CFS. Gene Sorry, My post was returned. I am not allowed to post links. Maybe you can search by description. Two peer reviewed papers have just been published on Elsevier's website: Albert PJ, Proal AD, Marshall TG. Vitamin D: The alternative hypothesis. Autoimmunity Reviews, in press. dx.doi.org/10.1016/j.autrev.2009.02.016 A full-text preprint is available from: AutoimmunityResearch.org/transcripts/AR-Albert-VitD.pdf And: Proal AD, Albert PJ, Marshall TG. Autoimmunity in the Era of the Metagenome. Autoimmunity Reviews, in press. dx.doi.org/10.1016/j.autrev.2009.02.011 A full-text preprint is available from: AutoimmunityResearch.org/transcripts/AR-Proal-Metagenome.pdf There are still 3 papers "in press" at the Annals of the New York Academy of Sciences. They have been peer reviewed and accepted, but are awaiting publication in the special issue "Frontiers in Autoimmunity." There is also still a paper in gestation, which has not yet been submitted. And: Article about the MP by Amy Proal: bacteriality.com/about-the-mp |
hokum
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.) |
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I've been working all day on this one, and have pulled lots of interesting stuff. Hope to post by Sunday. take care, Mike |
There is a biological theory emerging in biological research that most if not all human disease is infectious.
That infectious organisms start a cascade of autoimmune responses which in some people begin inflammatory reactions. Rheumatoid arthritis is one, and so is Type I diabetes. The latter is thought to be provoked following a viral illness. And there is a study out of Denmark that showed that bovine insulin fragments in cow's milk will induce Type I diabetes in children who have the genetic propensity to develop diabetes. There is a genetic difference in some peoples' reactions to infectious disease. So that the trigger may only affect these genetically different patients. An example is Campylobacter infections (gastroenteritis) may provoke GBS in some people. http://www.ncbi.nlm.nih.gov/pubmed/9665983 Quote:
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Mike, mrs. D. & Roz,
Thank you for your responses. As I have previously said, this forum has many incredibly bright individuals … with the three of you being excellent examples. I pray that we can continue on with healthy and considerate dialogue as there is much we can learn from the research and experiences of others. Mike, hyperbarics does address inflammation, thus providing pain relief associated with RSD. I have recently been in contact with an individual involved in Hyperbaric Research and Development for 33 years. In his experience, RSD patients who find relief with hyperbarics do not require ongoing treatments. Because Sarah’s symptoms continue to resurface, he believes that infection is perpetuating her illness. Mrs. D, it is evident that in many illnesses, infection has done irreversible damage; and when that is the case, building up the immune system and finding beneficial therapies is so very important. I am reading a very helpful book, Chronic Fatigue, Fibromyalgia, & Lyme Disease by Burton Goldberg and Larry Trivieri, Jr.. There truly are many answers to be discovered in Alternative Medicine. Roz, your passion in raising awareness of Lymes is to be applauded. Thanks for caring enough to share your experience in hopes of helping others!! It is important that we don’t get caught up in the panic of every new theory that surfaces, but sometimes a little hysteria is warranted and just may provide the help and answers we are all seeking. Blessings, Jeanne |
I'll never forget a science show I saw on TV about 3 yrs ago.
It was about a little boy, about 3-4yrs old, who sustained a closed head injury from a car accident. His behavior was severely affected, and he was very impaired as a result. Traditional medical experts had nothing to offer this boy other than rehab. His parents found a hyperbaric treatment center in Florida (I don't recall the doctor's name, sorry.) and he was given many treatments ..at least a dozen or more. His father had to go into the chamber with him, to keep him quiet and relaxed. This boy recovered functions, speech, and could be considered normal after these treatments. It was a very moving program. I have always been fascinated by hyperbaric treatments. They do them for burn victims, why not more often for others? |
Hyperbarics
Hyperbarics are amazing, and it breaks my heart that most are not aware of these treatments; and if they are, the logistics and cost of receiving them are often prohibitive. It is just very sad and wrong!
Jeanne |
Marshall Protocol for Sarcoidosis
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Sorry, I almost missed your post up there. I am so happy for you that the Marshall Protocol is helping, and thanks for your further explanation. I actually took the protocol in to our family doctor many months back; but since my daughter has had RSD of the intestines for four years, he was concerned that it would be too hard on her system. I really need to do more research into the protocol and Sarcoidosis. Ten years ago, after literally months of in-patient testing, my Mom was diagnosed with Sarcoidosis. She did not fit the profile, as she was 67 and had never had any prior problems. It was a very complicated illness, pretty much stumping the doctors at one of the country's best teaching hospitals. She initially presented with stroke symptoms, with an MRI "confirming" that thought; but as the weeks passed, it became apparent that was not the case. Once the Sarcoidosis was discovered, it was thought that what was going on in her brain was likely the same. They began treating her with very high doses of steroids. It turned out that they were mistaken. In actuality, it was a virus that she likely acquired because her immune system had been suppressed by the Sarcoidosis. Sadly, the steroids inflamed the virus and we ended up losing her. I am so very happy for you and that there is an end in sight! Thanks so much for sharing. Jeanne |
The Case of Dr. Barry Marshall and Dr. Robin Warren
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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 |
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 |
Lyme Disease and Under our Skin Documentarty
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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 ** |
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 |
Dr. Blaylock
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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Vitamin D is a seco-steroid not a vitamin
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. |
PLEASE check out the link that Dubious posted re the Marshall Protocol, which includes the following:
Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist.The point being, who needs evidence when you've got a compelling theory? Oh yeah, that and there's lots of evidence that Vit. D. deficiencies can be really bad for you. Once more, the link is http://209.85.173.132/search?q=cache...lnk&cd=8&gl=us Mike |
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Mike, John Cannell is The Vitamin D Council Executive Director an organization he created himself as follows: “…In 2003, he recruited professional colleagues, friends, and family for a board of directors and took the steps necessary to incorporate The Vitamin D Council as a tax exempt, nonprofit, 501(c)(e) corporation...” I suppose that could cause many people to question if he is completely unbiased in his promotion of vitamin D. Look him up on the internet, I can't post links. Note his first sentence: “...Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist..." As a PhD in EE Marshall has the capability to do in-silico studies at the molecular level and this has lead him to identify both agonists and antagonists to the vitamin D nuclear receptor (VDR) and forms the basis of his discussions and the MP science. He has arrived at the molecular pathway that regulates the concentration of the hormone 1,25-D. The Vitamin D council and Crannel rely on subjective epidemiological correlations ripe with confounding factors. Three peer reviewed papers about the MP have been published, three more are to be published in April. Marshall and colleges from the Autoimmunity Research Foundation have presented at science conferences in Sweden, L.A., Portugal, and China, last year. In April, Marshall has been invited to speak in Prague. Not a bad achievement for a protocol presented only 6 years ago. BTW, it has been necessary to close the MP study site to new members because the overwhelming response of over 7000 members (in olny 5 years)was too much for the small group of volunteer staff. Information is still available at a sister site to answer questions but the main site is not taking new members. As I said, neither Marshall nor myself have anything to gain. I am only sharing this information to sort of "pay it forward". I wish someone had alerted me about the MP three years sooner but I had to search for it myself. Gene |
Thanks for sharing!
Hi Gene,
Thanks again for additional insight into the Marshall Protocol. As you have indicated, it is not appropriate for everyone ... but how very wonderful that it has helped you. I have read some of the testimonials on the MP website and discovered many encouraging and remarkable results. Obviously there is lots of controversy surrounding this treatment, with some ready to attack both messenger and the message. I for one am thankful you are here and hope you hang around! Thanks! Jeanne |
Dear Ed -
I am sorry if I overlooked your comments. As one whose pulmonary sarcoidosis went into spontaneous remission - as I am advised it does with aprox. 2/3 of Northern-European males - I'm wondering if you know of any studies (case-reports, etc.) involving the use of the MP with Afro-American females, for whom pulmonary sarcoidosis is often a death sentence? And I certainly didn't mean to imply that you were supportive of the MP for any financial reason. My comment was directed at doctors whose practices seem to be based largely on providing unproven treatments across a wide range of specialties, without disclosing to their patients that these treatments have yet to be validated in controlled studies. Mike |
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Just a thought, Babesia (several strains) is a malaria like illness. Shortness of breath in the evening is a very common SX. The blood tests for Babesia are not accurate as well, maybe even worse than LYME tests. The M/P will not work for Babesia. Hugs, Roz |
Dear Mike,
Here's your post on quinine, I believe it was from Ada's link. Do you think it might of been possiable that you had a HERX reaction? A herx. reaction can kill someone. If you were well, why on earth do you need a breathing machine at night? Please research Babesia, I beg of you. Much Love, Roz I was given it years ago, and it was essentially useless. 100+ years ago it might have been the best drug available, but now we have far better. There was, however, one interesting moment in which I accidentally aspirated a capsule into my lungs and was sick for weeks. |
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I use the BiPAP machine for obstructive sleep apnea. This has nothing to do with the sarcoidosis, which has been clear for the last 2-3 years on CT lung scans, where it was first picked up, before being confirmed on biopsy. And I'll take a look at Babesia, thanks. Mike |
Check this out from Neurotalk:)
http://neurotalk.psychcentral.com/thread35024.html Quote:
[I've been diagnosed with Babesiosis and Sleep Apnea. Can you tell me where you got the information that babesiosis can cause Sleep Apnea? I like to refer my doctors, so that they will give me the best treatment possible. Thanks, Rod.] |
Dear Roz -
PubMed searches for "Babesiosis sleep apnea" and "Babesiosis obstructive sleep apnea" yield "No items found." Any other search term suggestions? Mike |
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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 |
Maybe worth looking into?
HI MIKE,
"DR. ROZ" IS OBVIOUSLY CONCERNED AND CARES DEEPLY ABOUT YOU. BECAUSE OF THIS, SHE WANTS TO MAKE SURE THAT YOU ARE NOT MISSING ANYTHING ... AND NOW IT IS MY TURN. I EXTRACTED THIS FROM THE QUOTE I POSTED IN THE BEGINNING OF THIS POST: [Tiny "pleomorphic" bacteria have been photographed living within the cells of the immune system of sarcoidosis patients. Emil and Barbara Wirostko produced stunning electron microscope photographs of immune phagocytes each containing hundreds of tiny bacterial forms, around 0.01 to 0.025 microns in diameter, living in colonies within the very cells (phagocytes) which are supposed to kill these bacterial parasites. One of the Wirostko photographs can be found at http://www.autoimmunityresearch.org/wirostko-fig3.jpg It is important to understand that these bacteria are "coccoid" (round, and very, very small), 10 to 100 times smaller than the shapes these same pleomorphic bacteria will take when they enter the bloodstream.] [We found that you can measure a hormone (in the blood) resulting from the Th1 inflammation produced by these tiny bacteria, and that it is elevated in Sarcoidosis patients. It is also often elevated in CFS patients, indicating that the inflammation of CFS is often very similar to that of Sarcoidosis.] MIKE, I KNOW THAT YOUR SARCOIDOSIS IS IN REMISSION, BUT COULD IT POSSIBLY BE THAT THE BACTERIA DESCRIBED ABOVE ARE STILL PRESENT IN THE CELLS OF YOUR IMMUNE SYSTEM? IT IS ALSO INTERESTING THAT THERE IS A SIMILAR HORMONE LINK IN CFS PATIENTS. I REALIZE THAT YOUR DIAGNOSIS IS RSD; BUT IT IS AMAZING HOW MANY SYMPTOMS OVERLAP IN CHRONIC FATIGUE, FIBROMYALGIA, RSD, AND LYMES. JUST SHARING BECAUSE I CARE. JEANNE |
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