Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 > ...a vicious circle of excessive immune > response... " Rob, Dr Cheney told us that this is exactly what this illness is. He said " The immune system is not suppressed, it is upregulated and is going all-out after something. We just don't know WHAT! " Dr Cheney was so far ahead of everyone else that he told us this before this illness was given any name at all and yet people are still arguing that this is a condition of immunosuppression. - The theory must fit the facts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Marshall designed the treatment for his own Sarcoidosis. And that's where he started, but his research has had him convinced for quite a while that the cause of sarc and many chronic illnesses that involve the immune system (he's not sure about MS yet, as it may be a TH2 response), is caused by cell wall deficient bacteria that escape detection. I already know my immune system is way overworked, have been saying that for years, also that I have an autoimmune thyroid condition (hashimotos), and that I respond favorably to the right antibiotics, so his protocol was a natural progression for me and a lot of people who've come to the same conclusions over time. So we have no problem trying the protocol, and will hopefully provide some of the info you're looking for in other patients, besides sarc patients. If you don't buy the premise, then it wouldn't make sense for you to do the protocol. For me, it all fits and the results have been remarkable. I have no doubt that inflammation has been causing the majority of my symptoms now that they're being relieved. And Benicar is extremely low risk. Studies show the drug's side effects are same as placebo, even in high doses. In conjunction with low dose antibiotics, he's reduced the risk and increased the effectiveness of antibiotic therapy tremendously. Regarding the vitamin D issue. I'd really suggest you go look up the research on Marshall's site. He says they've got it all wrong, and the science is there to prove it. More D is about the worse thing most of us can do. This is a brilliant man, who's not gaining anything for himself, except knowing that he's helping others. I really encourage you to give his work a look. Or call him. penny > Penny, > > I don't know much about this so perhaps you can help me. The Marshall > Protocol seems to be designed for those with sarcoidosis, which is a very > distinctive condition involving a vicious circle of excessive immune > response and the formation of granuloma that produce vitamin D, leading to > excessive D levels. > > I wonder if it is safe to extend the protocol without amendment to other > conditions that are thought to be autoimmune, like MS and RA, but do not > involve these granuloma. > > I also worry that an assumption is being made here that all or many PWC > might benefit when there is no evidence that I am aware of that it is an > autoimmune condition. There is, on the contrary, increasing evidence that > vitamin D deficiency, common in PWFMS, leads to widespread musculoskeletal > pains. > > Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi, don't mean to be redundant but I'm going to post the same thing here that I posted at the marshallprotocol group for those who may not go there. (I promise, I'll limit what I post here, but just wanted to follow up on the previous discussion about the Ds). My post from: marshallprotocol/ Hi, Well, my test results seem to support Dr. Marshall's theories regarding the D levels and my illness. Here are my vitamin D test results (Doc forgot to order ACE). 1,25-D 37 25-D 15 Independently those numbers are within range (although higher than Dr. Marshall's target numbers). However, the ratio of the two is what's important and should be at 1.25, and mine's 2.47 which conforms to Dr. Marshall predictions for inflammatory illness. Apparently, my body takes the vit. D it receives (which appears to be on the lowish side in the test) but too rapidly converts it to the 1,25-D hormone, creating too much for the body to handle. This affects the inflammatory cascade and the entire HPA axis according to my understanding, and certainly explains why I've responded so well to the Benicar. Please remember that I do not have Sarcoidosis, but that the TH1 inflammatory process is the same, and this would be due to the premise that many of these chronic illnesses are caused by pathogens that are hard to detect. Sarc patients tend to have a ratio of around 4, and mine's only 2.47, but that's still much higher than the mean of 1.25. Apparently it's time for me to start covering up and staying out of the sun. Not going to be easy, because I'm a light nut, and the only room I can tolerate in my house is one with lots of windows and skylights. Time to order the NOIR sunglasses, obviously, and see how this affects how I feel. I got the lab paperwork for my daughter to be tested, as she's highly photosensitive, feels lousy in the sun, has had a number of tick bites, and has excessive fatigue and migraines. I'm so hopeful that this protocol can restore her health. I really hope that others, especially lyme, cfs/fms patients, or people with various autoimmune and chronic illnesses will get these tests done so that we can compare them to the tests of sarc patients, and see if this could potentially be a marker for those of us who have difficult to treat illnesses, or illnesses with no known " cause " . pneny Explanatory excerpts from Dr. Marshall's website (can be found in files/links at left at the site, and also at www.sarcinfo.com): " This page from the Merck manual tells Doc that the maximum value for 1,25-D is 45 pg/ml. Print it, because he/she probably needs to know that (many of the labs print ridiculous ranges on their lab results page) I personally recommnd that Sarc patients should try to get their 1,25-D between 20 and 25 pg/ml to minimize symptoms, particularly to minimize the 'neuro' symptoms. This paper describes how Doc can calculate the D-Ratio Print it to discuss with him/her (and please discuss it on SarcInfo.com) Your doctor must not panic if he/she finds your Calcium/Vitamin D3 levels do not make sense. Typically the 25-hydroxyvitamin-D is at the low end of normal (<25) and the 1,25-dihydroxyvitamin-D will be normal to high (>29). Some doctors may want to prescribe a supplement when they see the low 25- hydroxyvitamin-D value that most sarcoidosis patients have. " http://www.sarcinfo.com/d-ratio.htm " In refractory cases of Sarcoidosis, the production of 1,25- dihydroxyvitamin D is essentially unregulated, and there is an extremely active hydroxylase biochemistry within the granuloma. Any 25-hydroxyvitamin D resulting from sunlight exposure or dietary supplement is vigorously converted into the active hormone within the inflammatory granuloma. This results in sarcoid patients typically having lower values of serum 25-hydroxyvitamin D than normals. We have developed the D-Ratio: Serum 1,25-dihydroxyvitamin D (pg/ml) --------------------------------------------- Serum 25-hydroxyvitamin D (ng/ml) to reflect the activity of the 25-OH-D-1-hydroxylase4 in the inflamed tissue. We use a D-Ratio of 1.25 as the normal mean, with a 0.5 standard deviation. Sarcoid patients, typically have D-Ratios above 4.0 and are thus sensitive to dietary Vitamin D and extremely sensitive to sunlight. D-Ratios less than 2.5 indicate that inflammatory production of 1,25-dihydroxyvitamin D is approaching `normal', and that renal control is returning. The patient is approaching remission from the run-away inflammation of sarcoidosis. " http://clinmed.netprints.org/cgi/content/full/2002080004 **** > > Penny, > > > > I don't know much about this so perhaps you can help me. The > Marshall > > Protocol seems to be designed for those with sarcoidosis, which is > a very > > distinctive condition involving a vicious circle of excessive > immune > > response and the formation of granuloma that produce vitamin D, > leading to > > excessive D levels. > > > > I wonder if it is safe to extend the protocol without amendment to > other > > conditions that are thought to be autoimmune, like MS and RA, but > do not > > involve these granuloma. > > > > I also worry that an assumption is being made here that all or > many PWC > > might benefit when there is no evidence that I am aware of that it > is an > > autoimmune condition. There is, on the contrary, increasing > evidence that > > vitamin D deficiency, common in PWFMS, leads to widespread > musculoskeletal > > pains. > > > > Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 , I agree with you but only to a point. The immune system seems to be going after something, but at the same time, opportunistic infections are not kept under control, so you can't say that the immune system is up or downregulated -- more like misregulated. However, the rest of my sentence concerned the formation of granuloma and the vitamin D toxicity that Marshall says they produce. This is a vitamin status that should not be assumed by anyone else without lab tests. Rob ----- Original Message ----- From: " erik_johnson_96140 " <erikj6@...> > ...a vicious circle of excessive immune > response... " Rob, Dr Cheney told us that this is exactly what this illness is. He said " The immune system is not suppressed, it is upregulated and is going all-out after something. We just don't know WHAT! " Dr Cheney was so far ahead of everyone else that he told us this before this illness was given any name at all and yet people are still arguing that this is a condition of immunosuppression. - The theory must fit the facts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Penny, I am not disputing that the protocol might be right for you. If you look again at my post, you will see that I am worried by the tendancy of Marshall supporters to assume that it will benefit PWC who do not have granuloma. Regarding vitamin D, many of us have been forced by new evidence to re-evaluate the usefulness of this vitamin to us. Here is the abstract of a seminal study published in December 2003 and more studies are awaiting publication. Prevalence of severe hypovitaminosis D in patients with persistent, nonspecific musculoskeletal pain. Plotnikoff GA, Quigley JM. Department of Internal Medicine, University of Minnesota Medical School, Minneapolis, Minn, USA. gregory@... OBJECTIVE: To determine the prevalence of hypovitaminosis D in primary care outpatients with persistent, nonspecific musculoskeletal pain syndromes refractory to standard therapies. PATIENTS AND METHODS: In this cross-sectional study, 150 patients presented consecutively between February 2000 and June 2002 with persistent, nonspecific musculoskeletal pain to the Community University Health Care Center, a university-affiliated inner city primary care clinic in Minneapolis, Minn (45 degrees north). Immigrant (n = 83) and nonimmigrant (n = 67) persons of both sexes, aged 10 to 65 years, from 6 broad ethnic groups were screened for vitamin D status. Serum 25-hydroxyvitamin D levels were determined by radioimmunoassay. RESULTS: Of the African American, East African, Hispanic, and American Indian patients, 100% had deficient levels of vitamin D (< or = 20 ng/mL). Of all patients, 93% (140/ 150) had deficient levels of vitamin D (mean, 12.08 ng/mL; 95% confidence interval, 11.18-12.99 ng/mL). Nonimmigrants had vitamin D levels as deficient as immigrants (P = .48). Levels of vitamin D in men were as deficient as in women (P = .42). Of all patients, 28% (42/150) had severely deficient vitamin D levels (< or = 8 ng/mL), including 55% of whom were younger than 30 years. Five patients, 4 of whom were aged 35 years or younger, had vitamin D serum levels below the level of detection. The severity of deficiency was disproportionate by age for young women (P < .001), by sex for East African patients (P < .001), and by race for African American patients (P = .006). Season was not a significant factor in determining vitamin D serum levels (P = .06). CONCLUSION: All patients with persistent, nonspecific musculoskeletal pain are at high risk for the consequences of unrecognized and untreated severe hypovitaminosis D. This risk extends to those considered at low risk for vitamin D deficiency: nonelderly, nonhousebound, or nonimmigrant persons of either sex. Nonimmigrant women of childbearing age with such pain appear to be at greatest risk for misdiagnosis or delayed diagnosis. Because osteomalacia is a known cause of persistent, nonspecific musculoskeletal pain, screening all outpatients with such pain for hypovitaminosis D should be standard practice in clinical care. Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Penny, are these tests the type that most doctors and labs can easily do. I mean, are the tests commonly done or will I need to take the research to my doctor to explain and is a special lab needed? I didn't find the answer to this on the info on the infosarc site. They just said that step one is to get tested. This is exciting news. Thanks for bringing it to our attention. Sandy > Hi, don't mean to be redundant but I'm going to post the same thing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Rob, I share your concern about the importance of making sure this treatment is appropriate for a given PWC before trying it. I continue to emphasize that there is a great deal of evidence that there are many subsets within the population diagnosed as having CFS. I, too, don't doubt that the Marshall treatment might be right for Penny, and probably some others on this list. But I think it's important to get the tests for the two forms of vitamin D and for the angiotensin converting enzyme level before going ahead with this treatment. There are PWCs who already have very low blood pressure, and lowering it further, as may occur with this treatment, because the renin-angiotensin system is also involved in blood pressure regulation, may not be a good idea for some. Also, there are PWCs who are deficient in vitamin D, and lowering it further would not be a good idea for some. Concerning the abstract you referenced below, I note that only the serum 25-hydroxy vitamin D was measured. While it is probably usually true that a low value for this parameter reflects a vitamin D deficiency, particularly for people who aren't getting much sunlight up in Minneapolis (or people who are house-bound), I think it's also important to note that Dr. Marshall has pointed out that people with sarcoidosis (and presumably those who have other conditions in which bacteria and genetic predisposition may be promoting granulomas) may have low values for 25-hydroxy vitamin D because it is being too rapidly converted to 1,25-hydroxy vitamin D. These people are not deficient in vitamin D, and in fact experience improvement if their vitamin D intake and sunlight exposure are reduced, according to Dr. Marshall. I think the only way to be sure is to measure both forms of vitamin D and take the ratio that Dr. Marshall has defined. Rich > > Penny, > > I am not disputing that the protocol might be right for you. If you look > again at my post, you will see that I am worried by the tendancy of > Marshall supporters to assume that it will benefit PWC who do not have > granuloma. > > Regarding vitamin D, many of us have been forced by new evidence to > re-evaluate the usefulness of this vitamin to us. Here is the abstract of > a seminal study published in December 2003 and more studies are awaiting > publication. > > Prevalence of severe hypovitaminosis D in patients with persistent, > nonspecific musculoskeletal pain. > > Plotnikoff GA, Quigley JM. > > Department of Internal Medicine, University of Minnesota Medical School, > Minneapolis, Minn, USA. gregory@s... > > OBJECTIVE: To determine the prevalence of hypovitaminosis D in primary > care outpatients with persistent, nonspecific musculoskeletal pain > syndromes refractory to standard therapies. PATIENTS AND METHODS: In this > cross-sectional study, 150 patients presented consecutively between > February 2000 and June 2002 with persistent, nonspecific musculoskeletal > pain to the Community University Health Care Center, a > university-affiliated inner city primary care clinic in Minneapolis, Minn > (45 degrees north). Immigrant (n = 83) and nonimmigrant (n = 67) persons > of both sexes, aged 10 to 65 years, from 6 broad ethnic groups were > screened for vitamin D status. Serum 25-hydroxyvitamin D levels were > determined by radioimmunoassay. RESULTS: Of the African American, East > African, Hispanic, and American Indian patients, 100% had deficient levels > of vitamin D (< or = 20 ng/mL). Of all patients, 93% (140/ 150) had > deficient levels of vitamin D (mean, 12.08 ng/mL; 95% confidence interval, > 11.18-12.99 ng/mL). Nonimmigrants had vitamin D levels as deficient as > immigrants (P = .48). Levels of vitamin D in men were as deficient as in > women (P = .42). Of all patients, 28% (42/150) had severely deficient > vitamin D levels (< or = 8 ng/mL), including 55% of whom were younger than > 30 years. Five patients, 4 of whom were aged 35 years or younger, had > vitamin D serum levels below the level of detection. The severity of > deficiency was disproportionate by age for young women (P < .001), by sex > for East African patients (P < .001), and by race for African American > patients (P = .006). Season was not a significant factor in determining > vitamin D serum levels (P = .06). CONCLUSION: All patients with > persistent, nonspecific musculoskeletal pain are at high risk for the > consequences of unrecognized and untreated severe hypovitaminosis D. This > risk extends to those considered at low risk for vitamin D deficiency: > nonelderly, nonhousebound, or nonimmigrant persons of either sex. > Nonimmigrant women of childbearing age with such pain appear to be at > greatest risk for misdiagnosis or delayed diagnosis. Because osteomalacia > is a known cause of persistent, nonspecific musculoskeletal pain, > screening all outpatients with such pain for hypovitaminosis D should be > standard practice in clinical care. > > Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Just want to mention that it's incorrect to say that blood pressure " may drop too low " on this protocol. All the studies that were done for FDA approval contradict that presupposition. I started the MP with my blood pressure consistently 80s/40s. My blood pressure has not dropped lower. If anything, it's gone up a bit, as is commonly reported. It stabilizes, it does not send it continuously lower. penny > > > > Penny, > > > > I am not disputing that the protocol might be right for you. If > you look > > again at my post, you will see that I am worried by the tendancy of > > Marshall supporters to assume that it will benefit PWC who do not > have > > granuloma. > > > > Regarding vitamin D, many of us have been forced by new evidence to > > re-evaluate the usefulness of this vitamin to us. Here is the > abstract of > > a seminal study published in December 2003 and more studies are > awaiting > > publication. > > > > Prevalence of severe hypovitaminosis D in patients with persistent, > > nonspecific musculoskeletal pain. > > > > Plotnikoff GA, Quigley JM. > > > > Department of Internal Medicine, University of Minnesota Medical > School, > > Minneapolis, Minn, USA. gregory@s... > > > > OBJECTIVE: To determine the prevalence of hypovitaminosis D in > primary > > care outpatients with persistent, nonspecific musculoskeletal pain > > syndromes refractory to standard therapies. PATIENTS AND METHODS: > In this > > cross-sectional study, 150 patients presented consecutively between > > February 2000 and June 2002 with persistent, nonspecific > musculoskeletal > > pain to the Community University Health Care Center, a > > university-affiliated inner city primary care clinic in > Minneapolis, Minn > > (45 degrees north). Immigrant (n = 83) and nonimmigrant (n = 67) > persons > > of both sexes, aged 10 to 65 years, from 6 broad ethnic groups were > > screened for vitamin D status. Serum 25-hydroxyvitamin D levels > were > > determined by radioimmunoassay. RESULTS: Of the African American, > East > > African, Hispanic, and American Indian patients, 100% had > deficient levels > > of vitamin D (< or = 20 ng/mL). Of all patients, 93% (140/ 150) had > > deficient levels of vitamin D (mean, 12.08 ng/mL; 95% confidence > interval, > > 11.18-12.99 ng/mL). Nonimmigrants had vitamin D levels as > deficient as > > immigrants (P = .48). Levels of vitamin D in men were as deficient > as in > > women (P = .42). Of all patients, 28% (42/150) had severely > deficient > > vitamin D levels (< or = 8 ng/mL), including 55% of whom were > younger than > > 30 years. Five patients, 4 of whom were aged 35 years or younger, > had > > vitamin D serum levels below the level of detection. The severity > of > > deficiency was disproportionate by age for young women (P < .001), > by sex > > for East African patients (P < .001), and by race for African > American > > patients (P = .006). Season was not a significant factor in > determining > > vitamin D serum levels (P = .06). CONCLUSION: All patients with > > persistent, nonspecific musculoskeletal pain are at high risk for > the > > consequences of unrecognized and untreated severe hypovitaminosis > D. This > > risk extends to those considered at low risk for vitamin D > deficiency: > > nonelderly, nonhousebound, or nonimmigrant persons of either sex. > > Nonimmigrant women of childbearing age with such pain appear to be > at > > greatest risk for misdiagnosis or delayed diagnosis. Because > osteomalacia > > is a known cause of persistent, nonspecific musculoskeletal pain, > > screening all outpatients with such pain for hypovitaminosis D > should be > > standard practice in clinical care. > > > > Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Yes very easy tests for the major labs except Labcorp. Labcorp refuses to keep the specimen frozen until testing, which Marshall says is vital. The other major labs, like Quest, Unilab, etc., do it correctly. Just go to www.sarcinfo.com and there's a link to the exact requiremnets for the tests, and even specific instructions depending on which lab you go to, so there will be no confusion. My friend did it at her docs office and the doc accidentally sent it to Labcorp, and they did it incorrectly, even though it specifically said to keep the blood frozen. So she's having to have it retested. penny > > Hi, don't mean to be redundant but I'm going to post the same thing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 I know about the recent trends that are saying we may be deficient in D, but Trevor can show you many studies which appear to prove the opposite, but people aren't paying attention. Please visit his site and look at the articles on HYPERvitaminosis. It really doesn't make sense that we'd be low in vit D, as it only takes approximately 10 minutes a day of sunlight, not to mention, we're getting light from other sources which creates D, as well as so much of our food has D added to it at present, milk, cereal, etc. Even many vitamin supplements. penny > , > > I agree with you but only to a point. The immune system seems to be going > after something, but at the same time, opportunistic infections are not > kept under control, so you can't say that the immune system is up or > downregulated -- more like misregulated. However, the rest of my sentence > concerned the formation of granuloma and the vitamin D toxicity that > Marshall says they produce. This is a vitamin status that should not be > assumed by anyone else without lab tests. > > Rob > > ----- Original Message ----- > From: " erik_johnson_96140 " <erikj6@e...> > > > > ...a vicious circle of excessive immune > > response... " > > Rob, Dr Cheney told us that this is exactly what this illness is. > He said " The immune system is not suppressed, it is upregulated and > is going all-out after something. We just don't know WHAT! " > Dr Cheney was so far ahead of everyone else that he told us this > before this illness was given any name at all and yet people are > still arguing that this is a condition of immunosuppression. > - > The theory must fit the facts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi, Penny. I'm glad that this treatment is working well for you and that your blood pressure did not drop too low. Here's what it says on page 3001 of the 2004 issue of the PDR (Physicians Desk Reference): " Hypotension in Volume- or Salt-Depleted Patients In patients with an activated renin-angiotensin system, such as volume- and/or salt-depleted patients (e.g. those being treated with high doses of diuretics) symptomatic hypotension may occur after initiation of treatment with BENICAR. Treatment should start under close medical supervision. If hypotension does occur, the patient should be placed in the supine position and, if necessary, given an intravenous infusion of normal saline. A transient hypotensive response is not a contraindication to further treatment, which usually can be continued without difficulty once the blood pressure has stabilized. " My concern was based on the fact that many PWCs are volume-depleted. Rich > > > > > > Penny, > > > > > > I am not disputing that the protocol might be right for you. If > > you look > > > again at my post, you will see that I am worried by the tendancy > of > > > Marshall supporters to assume that it will benefit PWC who do > not > > have > > > granuloma. > > > > > > Regarding vitamin D, many of us have been forced by new evidence > to > > > re-evaluate the usefulness of this vitamin to us. Here is the > > abstract of > > > a seminal study published in December 2003 and more studies are > > awaiting > > > publication. > > > > > > Prevalence of severe hypovitaminosis D in patients with > persistent, > > > nonspecific musculoskeletal pain. > > > > > > Plotnikoff GA, Quigley JM. > > > > > > Department of Internal Medicine, University of Minnesota Medical > > School, > > > Minneapolis, Minn, USA. gregory@s... > > > > > > OBJECTIVE: To determine the prevalence of hypovitaminosis D in > > primary > > > care outpatients with persistent, nonspecific musculoskeletal > pain > > > syndromes refractory to standard therapies. PATIENTS AND > METHODS: > > In this > > > cross-sectional study, 150 patients presented consecutively > between > > > February 2000 and June 2002 with persistent, nonspecific > > musculoskeletal > > > pain to the Community University Health Care Center, a > > > university-affiliated inner city primary care clinic in > > Minneapolis, Minn > > > (45 degrees north). Immigrant (n = 83) and nonimmigrant (n = 67) > > persons > > > of both sexes, aged 10 to 65 years, from 6 broad ethnic groups > were > > > screened for vitamin D status. Serum 25-hydroxyvitamin D levels > > were > > > determined by radioimmunoassay. RESULTS: Of the African > American, > > East > > > African, Hispanic, and American Indian patients, 100% had > > deficient levels > > > of vitamin D (< or = 20 ng/mL). Of all patients, 93% (140/ 150) > had > > > deficient levels of vitamin D (mean, 12.08 ng/mL; 95% confidence > > interval, > > > 11.18-12.99 ng/mL). Nonimmigrants had vitamin D levels as > > deficient as > > > immigrants (P = .48). Levels of vitamin D in men were as > deficient > > as in > > > women (P = .42). Of all patients, 28% (42/150) had severely > > deficient > > > vitamin D levels (< or = 8 ng/mL), including 55% of whom were > > younger than > > > 30 years. Five patients, 4 of whom were aged 35 years or > younger, > > had > > > vitamin D serum levels below the level of detection. The > severity > > of > > > deficiency was disproportionate by age for young women (P > < .001), > > by sex > > > for East African patients (P < .001), and by race for African > > American > > > patients (P = .006). Season was not a significant factor in > > determining > > > vitamin D serum levels (P = .06). CONCLUSION: All patients with > > > persistent, nonspecific musculoskeletal pain are at high risk > for > > the > > > consequences of unrecognized and untreated severe > hypovitaminosis > > D. This > > > risk extends to those considered at low risk for vitamin D > > deficiency: > > > nonelderly, nonhousebound, or nonimmigrant persons of either sex. > > > Nonimmigrant women of childbearing age with such pain appear to > be > > at > > > greatest risk for misdiagnosis or delayed diagnosis. Because > > osteomalacia > > > is a known cause of persistent, nonspecific musculoskeletal pain, > > > screening all outpatients with such pain for hypovitaminosis D > > should be > > > standard practice in clinical care. > > > > > > Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Penny, I don't have to visit the site as I have his paper on file. Yes it would take only 10 minutes a day with plenty of skin exposed to direct sunlight but the catch is that folks in colder climates wear a lot of clothes. Even in hot countries, D deficiency is a problem among Muslim women wearing the burkha (sp?). Check it out on pub med. However, D deficiency is widespread in cooler climates, especially among the photophobic and those with limited mobility who spend most of their time indoors and that's just a fact, whether it makes sense or not. Where I came in is that I'm pleased that it's working for you and it might work for others but please do not make assumptions or some people are likely to get hurt. That's still my position. Rob Re: Marshall protocol I know about the recent trends that are saying we may be deficient in D, but Trevor can show you many studies which appear to prove the opposite, but people aren't paying attention. Please visit his site and look at the articles on HYPERvitaminosis. It really doesn't make sense that we'd be low in vit D, as it only takes approximately 10 minutes a day of sunlight, not to mention, we're getting light from other sources which creates D, as well as so much of our food has D added to it at present, milk, cereal, etc. Even many vitamin supplements. penny > , > > I agree with you but only to a point. The immune system seems to be going > after something, but at the same time, opportunistic infections are not > kept under control, so you can't say that the immune system is up or > downregulated -- more like misregulated. However, the rest of my sentence > concerned the formation of granuloma and the vitamin D toxicity that > Marshall says they produce. This is a vitamin status that should not be > assumed by anyone else without lab tests. > > Rob > > ----- Original Message ----- > From: " erik_johnson_96140 " <erikj6@e...> > > > > ...a vicious circle of excessive immune > > response... " > > Rob, Dr Cheney told us that this is exactly what this illness is. > He said " The immune system is not suppressed, it is upregulated and > is going all-out after something. We just don't know WHAT! " > Dr Cheney was so far ahead of everyone else that he told us this > before this illness was given any name at all and yet people are > still arguing that this is a condition of immunosuppression. > - > The theory must fit the facts. This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 On Fri, 21 May 2004, penny wrote: > Independently those numbers are within range (although higher than > Dr. Marshall's target numbers). However, the ratio of the two is > what's important and should be at 1.25, and mine's 2.47 which > conforms to Dr. Marshall predictions for inflammatory illness. I am awaiting my serum vitamin D test results. I just joined this thread and am just wondering why if inflammation is involved why all the tests for same-ESR, C-Reactive Protein and a serum Ferritin test all are in normal range. I did have a high immunoglobulin IgA result and a below normal range Complement C4 result for which I will be seeing a rheumy about as this indicates a possible autoimmune disorder. margo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Rob, Dr. Cheney was aware of the opportunistic infections that got out of control while the immune system was upregulated in an antiviral response. His point was that the damage to CFSers is largely the result of the upregulated immune system attacking in an autoimmune-like response. The UBO's in the brain are somewhat like MS but not quite. The striking thing about this is the way it seemed to have a more devastating effect in people who were apparently healthy and seemed to have the greatest potential for a really strong immune response. When what we called " The Truckee Crud " (remember the Tahoe Truckee HS girls basketball team cluster?) passed through North Tahoe and then on to Incline Village, it really slammed everybody. But some of us just never recovered. And the people who didn't recover were marathon runners, tennis pro's, champion swimmers, and with all humility; hang glider instructors. It was just crazy. I've told everybody that the Canary concept is a good one, and it's just plain common sense, and I'm sure that someday when the planet is a total toxic waste dump that the Canary concept will emerge in full force but that just doesn't fit what happened in Incline. Looking at who recovered from the Truckee Crud, it was as if you were better off being sickly than athletic. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Sounds like you're assuming I'm making assumptions? :-) There's more evidence than 1 paper regarding hypervitaminosis, resulting in many people being misdiagnosed with hypovitaminosis. Shouldn't this also be a concern? Again, I'm making no assumptions. Not suggesting anyone should do the protocol. Just sharing information, and my own experience. And wanting to be sure that people know there's two side to the vitamin D story. penny -- In , " Napier " <rob.nap@v...> wrote: > Penny, > > I don't have to visit the site as I have his paper on file. > > Yes it would take only 10 minutes a day with plenty of skin exposed to > direct sunlight but the catch is that folks in colder climates wear a lot > of clothes. Even in hot countries, D deficiency is a problem among Muslim > women wearing the burkha (sp?). Check it out on pub med. > > However, D deficiency is widespread in cooler climates, especially among > the photophobic and those with limited mobility who spend most of their > time indoors and that's just a fact, whether it makes sense or not. > > Where I came in is that I'm pleased that it's working for you and it might > work for others but please do not make assumptions or some people are > likely to get hurt. That's still my position. > > Rob > > Re: Marshall protocol > > > I know about the recent trends that are saying we may be deficient > in D, but Trevor can show you many studies which appear to prove the > opposite, but people aren't paying attention. Please visit his site > and look at the articles on HYPERvitaminosis. It really doesn't make > sense that we'd be low in vit D, as it only takes approximately 10 > minutes a day of sunlight, not to mention, we're getting light from > other sources which creates D, as well as so much of our food has D > added to it at present, milk, cereal, etc. Even many vitamin > supplements. > > penny > > > > > , > > > > I agree with you but only to a point. The immune system seems to > be going > > after something, but at the same time, opportunistic infections > are not > > kept under control, so you can't say that the immune system is up > or > > downregulated -- more like misregulated. However, the rest of my > sentence > > concerned the formation of granuloma and the vitamin D toxicity > that > > Marshall says they produce. This is a vitamin status that should > not be > > assumed by anyone else without lab tests. > > > > Rob > > > > ----- Original Message ----- > > From: " erik_johnson_96140 " <erikj6@e...> > > > > > > > ...a vicious circle of excessive immune > > > response... " > > > > Rob, Dr Cheney told us that this is exactly what this illness is. > > He said " The immune system is not suppressed, it is upregulated and > > is going all-out after something. We just don't know WHAT! " > > Dr Cheney was so far ahead of everyone else that he told us this > > before this illness was given any name at all and yet people are > > still arguing that this is a condition of immunosuppression. > > - > > The theory must fit the facts. > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 Margo, I'd ask or Trevor or Barb Peck those questions. They've got a much better grasp of the immune system than I do. I know that PWC typically test normal on tests, that's how we get the lovely diagnosis. Also know that these bugs are able to evade the immune system's defenses, so the typical markers of the immune response may not be there. How that works with the inflammatory cascade, I'm not certain. There's a lot of technical talk that's still over my head, but some smart folks who can answer your questions better than I. And Trevor has made strides in understanding the immune response. We are obviously ill, and many of us do have diagnosed autoimmune illnesses, so it seems the immune system is defintely involved. I'm quite certain, after being on the protocol for almost 3 weeks, that I have some pretty serious inflammation going on as it's like night and day since I started. Not just body pain (I'd developed arthritic type pain in the last few months) but also mental stress has really melted away, and I'm sleeping like I haven't since I was a kid. penny > > > Independently those numbers are within range (although higher than > > Dr. Marshall's target numbers). However, the ratio of the two is > > what's important and should be at 1.25, and mine's 2.47 which > > conforms to Dr. Marshall predictions for inflammatory illness. > > I am awaiting my serum vitamin D test results. I just joined this thread > and am just wondering why if inflammation is involved why all the tests > for same-ESR, C-Reactive Protein and a serum Ferritin test all are in > normal range. I did have a high immunoglobulin IgA result and a below > normal range Complement C4 result for which I will be seeing a rheumy > about as this indicates a possible autoimmune disorder. > > margo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 See protocol ratings at http://lassesen.com/cfids/protocols.htm Marshall Protocol Hello. I have had CFS for 14 years and in a few months, may start the Marshall Protocol. I am new to this group and was wondering if anyone has any experience with the MP. Thanks! Sue ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.2/780 - Release Date: 29/04/2007 6:30 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Hi, Sue. The MP is off-topic on this list. Also, benicar has turned out to not be so good as advertized for CFS and has demonstrated clearly dangerous side effects in PWCs, just check the archives on this list using the word " benicar " and take heed. " suebackagain123 " <suebackagain123@...> wrote: > > Hello. I have had CFS for 14 years and in a few months, may start the > Marshall Protocol. I am new to this group and was wondering if anyone > has any experience with the MP. > > Thanks! > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Sue, I used to be a moderator for the Marshall Protocol website. (They decided I was too openminded or something to work out there. <grin> I am very proud of that.) I think it is an effective protocol and I know many patients who are doing well on it. Having said that you need to have a doctor who can use it wisely. Benicar at high dose may be risky and probably doesn't need to be taken for years and years either. It is not good to reduce D levels indefinitely. But the antibiotics probably work very well, and the Benicar and reduced D help for a few months. If you want to email me off list that is fine. I would be interested to know which doctor will oversee your treatment as well. Some of them are outstanding and understand the issues I mention above. a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Just to give you another point of view, Prof. De Meirleir said that it is very bad to reduce and avoid completely vitamin D (not to mention wearing sunglasses at all times and not going out at all), although he does not prescribe it unless you show a deficiency. He is also quiet reluctant prescribing antibiotics for too long periods, and he prefers to do short courses at full doses and breaks in the middle rather than small doses for almost ever. Massimo Re:Marshall Protocol Sue, I used to be a moderator for the Marshall Protocol website. (They decided I was too openminded or something to work out there. <grin> I am very proud of that.) I think it is an effective protocol and I know many patients who are doing well on it. Having said that you need to have a doctor who can use it wisely. Benicar at high dose may be risky and probably doesn't need to be taken for years and years either. It is not good to reduce D levels indefinitely. But the antibiotics probably work very well, and the Benicar and reduced D help for a few months. If you want to email me off list that is fine. I would be interested to know which doctor will oversee your treatment as well. Some of them are outstanding and understand the issues I mention above. a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 I know that everyone must follow their own path to healing but here is my experience with the MP. It set me back!!! The more Benicar I took and the more I avoided Vit D the worse I felt. It was a horrible ordeal and in the end did nothing for me, since within a couple of weeks of stopping the antibiotics I was back where I started. After reading Ken's papers on D I gave it a try, this started me on a whole new path of undertanding about CFS that ended in remission. The question I always had about the MP is why do all of the cohorts have to remain on the antibiotics for years and years if it is a cure for anything. The site is full of people who have been on the MP for years and still are having problems, including the original cohorts. Antibiotics have helped many people, but in my opinion the MP is not an antibiotic protocol for CFS it is a protocol for Sarcodosis, and even they do not get very good results. Anyone interested in antibiotic protocols for CFS should look into Ken's papers, the Road Back Foundation (the Brown protocol), The Vanderbilt protocol, Dr. Cecile Jadin, etc. Before beginning a protocol that uses an untested use of a powerful suppresive substance like Benicar and that advises against sunshine, one should try to understand the issues. Suppresion of the Angiotensin receptor sites in those who already have poor reactive function is not wise. Also many of us with CFS have been tremendously beniffited by large doses of Vit D, so there is clearly something wrong with the Marshall theory. None of the Marshall concepts have been shown to be a cure for anything, many feel better, but they are not cured, and most have all symptoms return after stopping the antibiotics. In the MP the thing that works for people are the pulsing and combination of several antibiotics, Benicar and Vit D avoidance are nonsense unscientific concepts that have harmed many people including me. I found antibiotics to be much easier and effective after giving up Benicar and Vit D avoidance. Please study the issues before beginning to take Benicar or putting sun blocking drapes up or ordering your sunglasses and broad rimmed hats. In my opinion for those with CFS, the MP is the opposite of what we need. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 hello. thank for your reply. in fact, i have a phone appt with Prof. De Meirleir soon. i am expecting he will discourage me from doing the Marshall. so i guess i will see. all i know is i am despeate to get my mind back. its been 14 years of an ever thickening cloud of darkness and i cant take much more! sue > > Just to give you another point of view, Prof. De Meirleir said that it is very bad to reduce and avoid completely vitamin D (not to mention wearing sunglasses at all times and not going out at all), although he does not prescribe it unless you show a deficiency. He is also quiet reluctant prescribing antibiotics for too long periods, and he prefers to do short courses at full doses and breaks in the middle rather than small doses for almost ever. > > Massimo > > Re:Marshall Protocol > > > Sue, > I used to be a moderator for the Marshall Protocol website. (They decided I > was too openminded or something to work out there. <grin> I am very proud of > that.) I think it is an effective protocol and I know many patients who are > doing well on it. Having said that you need to have a doctor who can use it > wisely. Benicar at high dose may be risky and probably doesn't need to be > taken for years and years either. It is not good to reduce D levels > indefinitely. But the antibiotics probably work very well, and the Benicar > and reduced D help for a few months. > > If you want to email me off list that is fine. I would be interested to know > which doctor will oversee your treatment as well. Some of them are > outstanding and understand the issues I mention above. > > a Carnes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 HAve you ever tried b12 injections? That has helped many, including me. Adrienne Re:Marshall Protocol > > > Sue, > I used to be a moderator for the Marshall Protocol website. (They decided I > was too openminded or something to work out there. <grin> I am very proud of > that.) I think it is an effective protocol and I know many patients who are > doing well on it. Having said that you need to have a doctor who can use it > wisely. Benicar at high dose may be risky and probably doesn't need to be > taken for years and years either. It is not good to reduce D levels > indefinitely. But the antibiotics probably work very well, and the Benicar > and reduced D help for a few months. > > If you want to email me off list that is fine. I would be interested to know > which doctor will oversee your treatment as well. Some of them are > outstanding and understand the issues I mention above. > > a Carnes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Hi Sue, I do not want to dicourage you, but you are right. DMl will not be involved with the Marshall protocol. There is no doubt..... Talk with him personally and ask for the reasons and you will understand. best wishes!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Has anyone looked into the Marshall Protocol? I read that it is controversial. But what isn't? Donna Hall This week a Nature.com Journal, " Cellular and Molecular Immunology, " published our latest paper " Immunostimulation in the era of the Metagenome. " This is a detailed paper, containing both theoretical material and clinical case summaries: http://www.nature.com/cmi/journal/vaop/ncurrent/abs/cmi201077a.html A free preprint is online at: http://autoimmunityresearch.org/preprints/Proal2010CellularMolecularImmunologyPr\ eprint.pdf During our regular web conference this weekend I will discuss key topics from the new paper - immunopathology, kidney 'failure' and olmesartan dosing. I will finish answering the question about the difference between mouse and human immune systems, and answer new questions submitted during the conference. http://MarshallProtocol.com/conferences/ Remember that the conference will start on Sat Feb 5th at 2pm PST, there is a countdown timer at the website. The text window for asking and answering questions will become available 15 minutes before the hour. Sincerely, Trevor ------------------------------------------ Prof. Trevor G Marshall, Director, Autoimmunity Research Foundation, Thousand Oaks, California Faculty of Health Sciences, Murdoch University, Western Australia ------------------------------------------ .. .. Autoimmunity Research Foundation | 3423 Hill Canyon Ave | Thousand Oaks, CA 91360 Quote Link to comment Share on other sites More sharing options...
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