Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Bill I know is really busy so until comes around to answer your questions with more accuracy, I will comment. 1) I do not think that Dr. Marshall has any experience with 'CFS' patients. Since it is unclear what 'CFS' is, he may have treated some that were previously diagnosed with CFS. I do not know. In fact, I do not believe Dr. Marshall has knowingly treated any lyme patients either. Some lyme patients have similar symptoms as sarc, and may have been misdiagnosed, but again, we do not even know if lyme patients show abnormal results. For lyme at least, the inflammation cascade would suggest that some might. 2) I do not think there are any studies of the test results on CFS or lyme patients. Normally, I don't make conjectures and I'm no expert by any standard, but my intuition is that a few lyme patients will show the defect, and a few 'CFS' patients will too. I base this on two reasons: a) I don't hear too many lyme or CFS patients complain that they feel worse in sunlight (increases vit D). A few lyme patients have said this--one is doing better on a drug somewhat similar, but less effective, than Benicar. My understanding is that Sarc patients with the defect feel worse in sun. Second, I think a lot of CFS and some lyme patients have an entirely different cytokine profile than sarc patients. I think disagrees totally with this, and he's done the research and is feeling better, at least initially, on Benicar. So I can understand his enthusiasm. I'm just playing a guessing game which I probably shouldn't do. I still think it is an avenue to persue, even if it only helps 10% of people suffering. 3) I 'think' the testing is a key component of the protocol. has spoken with him, so he will know if you HAVE to have the defect in order for Marshall to start the program. I will let answer your other questions and correct me if I have made any errors. Kell > > > this is very interesting. Thank you for posting it. > > I wish that Dr Marshall would talk specifically about treating CFS. > The tests that he uses for Sarcoidosis are tests that have been > consistently found abnormal in people who have active sarcoidosis. > namely the Angiotensin Convertting Enzyme (ACE) and the Vitamin D > tests. > > It makes sense that Benicar would help to rebalance these results, > and thus feel better. > > But do people with CFS have abnormal results on these tests? and does > Dr Marshall think that his protocol would help people who have CFS > regardless of what these test results are? > > > also, i'm little worried about the idea of low-dose abx? is there any > reason not to just do the standard dosage of minocycline? > > finally, could you just give a summary of all the things you are > taking....inculding any supplements etc...? > > I hope you continue to improve. this is really exciting potential > news for all of us.... > > > thanks > bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Bill, check out the low dose minocycline protocol for RA on the Road Back Foundation's website. The rationale is there for the reduced dosage, and it's what my doctor wanted me to do but I started on normal doses of minocycline anyway, and got really sick. Am doing better now with symptom relief on minocycline 3xweek. I'm not diagnosed with borrelia or lyme, but I am confident that my CFS is caused by infection, whatever the type, because of my reaction to antibiotics. The problem is, the bugs always seem to be able to outsmart the antibiotic. I'd be surprised that if this really works, that it wouldn't also work pretty much for all infections. penny > > > this is very interesting. Thank you for posting it. > > I wish that Dr Marshall would talk specifically about treating CFS. > The tests that he uses for Sarcoidosis are tests that have been > consistently found abnormal in people who have active sarcoidosis. > namely the Angiotensin Convertting Enzyme (ACE) and the Vitamin D > tests. > > It makes sense that Benicar would help to rebalance these results, > and thus feel better. > > But do people with CFS have abnormal results on these tests? and does > Dr Marshall think that his protocol would help people who have CFS > regardless of what these test results are? > > > also, i'm little worried about the idea of low-dose abx? is there any > reason not to just do the standard dosage of minocycline? > > finally, could you just give a summary of all the things you are > taking....inculding any supplements etc...? > > I hope you continue to improve. this is really exciting potential > news for all of us.... > > > thanks > bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 , I could swear I heard you read that currently you are taking mino every day. Do you plan on going to MWF over long term? I think the low dose mino offers the best compromise for taking abx long term due to low toxicity, low cost, less chance if any of suppressing immune system, etc. If I eventually do low dose mino MWF protocol I plan on mixing in some abx like Biaxin, Zithromax, Flagyl just for 10 days at a time, for extra measure at times. From what I understand this is long term project to defeat ALL infection and might need 2-4 years being that study showed higher remission rate for 4 years than 3 years, albeit we are talking different diseases here, but perhaps not totally different parts of the etiology. Also, , I doubt you have ever read this from me but many times in the past here I posted about how when I had the surgery 5 years ago that put me into the deep stage CFS I was given dexamethasone and Zithromax. I am thinking that dexamethasone is what caused me to feel as good as I had ever felt up to that point (and this is before I knew I even had CFS, although the surgeon/ENT/allergist had already diagnosed me as such even though I was in denial) and completely eliminated ALL brain fog to where I could think clearly and quickly or as another CFSer who followed up on my post said who had also taken dexamethasone and abx following a surgery, " effortlessly " . Are there similar properties of dexamethasone that caused the same thing as benicar may cause, or is this likely simply b/c of the powerful anti-inflammation effect of dexamethasone? Thanks. In a message dated 5/1/2004 11:34:29 AM Eastern Daylight Time, writes: also, i'm little worried about the idea of low-dose abx? is there any reason not to just do the standard dosage of minocycline? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 , the protocols from both Dr. Marshall and the Road Back Foundation seem to indicate increasing the minocycline as tolerance increases. penny > , I could swear I heard you read that currently you are taking mino > every day. Do you plan on going to MWF over long term? I think the low dose mino > offers the best compromise for taking abx long term due to low toxicity, low > cost, less chance if any of suppressing immune system, etc. If I eventually > do low dose mino MWF protocol I plan on mixing in some abx like Biaxin, > Zithromax, Flagyl just for 10 days at a time, for extra measure at times. From what > I understand this is long term project to defeat ALL infection and might need > 2-4 years being that study showed higher remission rate for 4 years than 3 > years, albeit we are talking different diseases here, but perhaps not totally > different parts of the etiology. Also, , I doubt you have ever read this > from me but many times in the past here I posted about how when I had the > surgery 5 years ago that put me into the deep stage CFS I was given dexamethasone > and Zithromax. I am thinking that dexamethasone is what caused me to feel as > good as I had ever felt up to that point (and this is before I knew I even had > CFS, although the surgeon/ENT/allergist had already diagnosed me as such even > though I was in denial) and completely eliminated ALL brain fog to where I > could think clearly and quickly or as another CFSer who followed up on my post > said who had also taken dexamethasone and abx following a surgery, > " effortlessly " . Are there similar properties of dexamethasone that caused the same thing as > benicar may cause, or is this likely simply b/c of the powerful > anti-inflammation effect of dexamethasone? Thanks. > > > In a message dated 5/1/2004 11:34:29 AM Eastern Daylight Time, > writes: > also, i'm little worried about the idea of low-dose abx? is there any > reason not to just do the standard dosage of minocycline? > > > Quote Link to comment Share on other sites More sharing options...
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