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  • #313043
    John McDonald
    Participant

    To tell the truth I would be a whole lot more comfortable myself if the PhD's agreed on D.  But I take solace that after avoiding it for years I seem to be doing just fine. Besides I have seen a lot of junk science and especially in medicine, particularly as it passes through newspapers, so I'm not inclined to support the pro-D faction just because they are louder. But all the same I would be happier if this AP / MP treatment were more mainstream.

    When I started the MP in earnest I really worked at avoiding D and my serum 25D indeed dropped. About the time it passed through 12 ng/ml I had a big increase in herxing remarkably like Marshall predicted.  I didn't know it was passing through 12 at the time, I just noted the herxing. But later when I measured my D again I realized that it coincided pretty well.  At one point my 25D became immeasurable but now with the same diet and only modest more sunlight exposure my 25D has become stable around 12 ng/ml.  It would seem that my body is now regulating my 25D level probably just due to light exposure and irrespective of my lack of exogenous dietary D.

    Respecting herxes: on AP I was aware of 2, a few days immediately when I started and a few days to a week 8 months later when I finished the last of my Plaquenil. Between those episodes I can say that my RA became unstable with good and bad days and weeks but nothing that I could finger as a herx. And as a skeptic I could and did argue to myself that my two bookend herxes might just have been a placebo effect. Afterall I had the appropriate psychological stimulus and I had been trained to expect a herx. But herxing has been entirely different on the MP. One of the MP antibiotics has a long half-life and it is taken once each 10 days. The others are taken once on alternate days. On the MP since beginning I have experience clear and evolving herxing since September 2005 that waxes and wanes according to those two 48 hour and 10 day patterns, like clockwork.  These three antibiotics are familiar to this group, I will call them Z, C and Minocycline. So it isn't a reaction to the antibiotics. Moreover any particular herx I have fades in time and is replaced by another in different tissues. This is directly in response to my dosing schedule which calls on me to start with small doses of each and to gradually step each antibiotic up in dosage as the herxing wanes. I spent about 2 months on the 1st abx, another 10 months on a combination of two abx, slowly working these up, and then added a 3rd in Sept 2006. With each new addition all are reduced to a low, low level and the stepping starts again. Nearly each change in abx produces a somewhat new and different herx, which gradually wanes away until the next step up. So my herxing started especially with my eyes, then it was largely exhaustion, then my joints and then muscles, and now my cognition and emotions. I can pretty well stop herxing by backing down to a former mastered dose, but I am still taking all 3 antibiotics, just 25mg or 50mg less of one of them when I need or want to be herx-free for a bit. I have heard some contrived explanations from the auto-immune proponents for herxing but the easiest explanation for me to believe for this waxing and waning is that the antibiotics are killing something. Especially since when the herxing wanes away often so does the original symptom.

    So I wasn't so sure why antibiotics worked when I first decided to use them and I didn't care. Even if they are immuno-suppresive, and they are in a limited way, they still had to be better for me than methotrexate or Enbrel. But now someone would have to be pretty persuasive to convince me that my clockwork herxing isn't about killing bacteria. I can't see bacteria or ribosomes or biomolecules so I don't believe in herxing the way I believe in say, baseball which I can see, hear and feel. But the Jarisch-Herxheimer story is the most plausible and least contrived story that I have been told to explain this waxing and waning, and my recovery.

    I don't think that by now that I am being too quick to label these things that I experience as herxes.

    #313044
    Todd WI
    Participant

    Hi John,

    My herx comment certainly wasn't “aimed” at you, but thanks for the detailed reply as to your experience with herxes.  As always, your explanation seems reasonable.

    I wonder if you ever thought you'd end up being a poster child for MP?

    Todd

    #313045
    John McDonald
    Participant

    “…so throroughly predictive”?

    In the early 20th century Einstein, Bohr and Schrodinger turned physics on its head by introducing relativity and quantum mechanics. Those fields are so counter-intuitive, so foreign to our day-to-day experience that it is hard to believe them. So Physics came to accept or reject models (theories) based on whether they predict the outcome of an experiment, not based on whether they feel like truth or not. It is a practical way to deal with being unable to know something in your gut. I was trained in this tradition in college so tend to see “unknowable things” in these terms. Marshall has created an extensive and detailed model of the how we acquire e.g., rheumatoid arthritis. He and by now the MP cohort also do an incredibly detailed job of predicting how we will respond to the MP medicines. Each of us respond differently but there are strong commonalities. So far my phase-1, phase-2 and phase-3 experiences have been almost eerily as he predicted. To me that doesn't mean that his model is correct especially in all details, but it is very reassuring and it gives me considerable confidence that the next bit will also be as the treatment model predicts. I would have to restart school from freshman biology through graduate school and more to judge his theory as a peer, something I am not about to do at 53 years of age. Besides, I like physics better than microbiology. But when someone asks me if the MP will cure me completely (vs. remission) I say “who knows, but so far he has been spot on”.

    But I am actually with you on your approach. I bit the AP apple first. It was easier and less risky and at the time there was only one other patient on the very new MP who had RA as a primary diagnosis. But one concession I made to the MP immediately was to stop taking D. That didn't hurt my progress on the AP at all. It might have helped it. In about 8 months I was starting to use the remission word and by18 months I figured I was in remission. So the lack of D didn't hurt my recovery one bit. But that is a sample of 1.

    #313046
    Bill
    Participant

    Todd,

     I really find your labeling people who have found the immense amount of scientific data  behind the Marshall protcol  helpful, as “a cult” absurd at best.

     Dr Marshall was able to overcome the terminal ” auto immune ” disease sarcoidosis. He has helped countless other patient's do this as well. Hundreds if not thousands of other people suffering from chronic inflammatory diseases are also recovering from their illnesses.

     I do not see the Vitamin d promoters having this same success with diseases of this level, despite all the positve press they recieve.

     If Dr Marshall  is leading a “cult” of people regaining their health, then I say we need more “cults” like this.

    Be well,

    Bill

    #313047
    Karen R
    Participant

    Hi All.

    Well I am one of the pro Vitamin D people with a very serious form of Scleroderma and I am improving rapidly by the day. I definitely can say if it were not for the vitamin D supplelmentation I would have not gotten better. My levels are finally high enough that I can reduce the amount I supplement with. In my case I was not absorbing vitamin d and needed to supplement. I think that the calcium/ magnesium and vitamin d ratio has to work for us individually. My calcium deposits are finally going away and I noticed a definite correlation between my vit d exposure( from sun directly or supplementation) and the calcium deposits draining on there own. I think because of the bacteria overgrowth in my intestines I was not properly absorbing my vit d along with other vitamins thus becoming deficient in many. Now I am absorbing, based on my latest blood test and I test for both vit d.

    Karen R

     

    #313048
    Todd WI
    Participant

    Hi John,

    How were you able to make the leap that MP would work for RA?  I'm guessing that when you started, MP had successes for sarcoidosis, but relatively little history on other auto-immune diseases.

    Todd

    #313049
    Todd WI
    Participant

    Hi Bill,
     
    I apologize if my choice of words upset you. My intent was not to belittle either camp. I'm just trying to wade my way through this issue.

    Todd

    #313050
    John McDonald
    Participant

    Karen – I sure don't mean to criticize your choice. You have a life threatening disease so your choices require less risk than mine do. If you get it wrong you are done. I have room to experiment a bit. For quite a long time I wouldn't recommend the MP to scleroderma patients for just that reason, too risky for them. I have since watched a few brave SD souls try the MP and I find their results extremely encouraging, so now I am less equivocal. I openly recommend the MP to scleroderma patients. But only to those who ask me, and some do. Only to those who have already expressed some interest. To my knowledge none of these patients has progressed very far on the MP yet so know one knows.

    By the way Marshall wouldn't argue your relief by using vitamin D. He says it works something like prednisone. If you have a autoimmune disease, if your own body is attacking your own tissues then that might be exactly the right treatment. But if you have a CWD bacterial infection then it would be the wrong treatment. But either way it should provide relief for a time. Besides, if it didn't at least provide relief for a time then it would never have gained the kind of traction it has. It the Marshall concept catches and persists I can easily see vitamin D and other steroids being used by medicine for emergency measures, just not on a long term basis. But note I have said if many times here. I don't know.

    Todd – Carol S. was a rheumatoid arthritis patient who adopted the MP right away. She and I corresponded for 18 months or so before I started it and by then there were 2 or 3 more. Later after I started I decided that part of my motive underneath much rationalization had to be an insane desire to experiment on my favorite subject, me. Happily so far it has worked out.

    #313051
    Karen R
    Participant

    Hi John,

    My post was not to criticize you, it was just to voice another opinion. For the record I have been taking vit d for years and it still helps, so the argument that it wears off is not applying to me.

     

    All the best,

     

    Karen R

     

    #313052
    John McDonald
    Participant

    Karen – it is true that I am most passionate and sensitive about things that I am least comfortable with. Maybe that's human nature, like a bully really being insecure. But I didn't take it as criticism.

    I know a woman who said she had RA for years. She started taking fish oil and nothing else and it cleared up. Ah ha!, I thought. According to the theory as I know it this will pass. But no, turned out that she blundered onto the fish oil 20 or 25 years ago. So I figure when it comes to medicine we do the best we can to figure it out but must routinely accept what we perceive to be impossible as perfectly real.  I wish the rheumatologists could do that.

    I can say quite a bit about Benicar and antibiotics from personal experience. On the MP when I do something with Benicar I can see results in minutes to hours. When I fuss with antibiotics I get results within a day.  But the entire vitamin D issue is much more subtle. It takes a couple of months of avoidance to drop serum 25D by very much. In that period of time a lot can happen.

     

    #313053
    Karen R
    Participant

    John,

    I would like to say thanks for all you do. I think all of us combined will figure these diseases out and hopefully the next generation will not even know what these diseases are.

     

    Karen R

     

    #313054
    mom
    Participant

    John,

    are you suppose to restrict D intake even if your 1,25D levels are extremely low as well as 25D?

    Thanks,

    MOM

    #313055
    John McDonald
    Participant

    are you suppose to restrict D intake even if your 1,25D levels are extremely low as well as 25D?

     The problem is once you start the Benicar it causes your 1,25D levels to change lower to a more normal level. Some people continue to measure their 1,25D but evidently it isn't very diagnostic vs. the 25D, once you start the protocol. Besides it is a very volatile seco-steroid that may shoot up if you drive to the market and drop back down as sit indoors. It only has about a 6 hour half-life and I can personally attest to that from experience. It is also difficult to measure. A normal number is on the order of 12 or 20 picograms per milliliter.  An elevated amount might be 2 or 3 times that but it is still a parts per trillion type of measurement, and it is only valid if the blood is frozen and handled with care. As a practicing scientist / engineer I think the measurement has value but not enough compared to the cost and difficulty for me to have it done again after my initial diagnosis.

    I wish I could measure it on the fly with a gizmo like diabetics have for blood sugar. That would be extremely interesting but we are a long way from that type of technology.

    Moreover, you can boost your 1,25D quickly with sunlight. But boosting it with dietary D is treacherous.  The dietary D has a half-life of months, whereas the 1,25D has a half-life of 6 hours.   It would be like steering an ocean liner with the rabbit like changes that we normally use to steer a car. It would be impossible to not to over or under compensate, especially since our own body has much faster mechanisms for creating 1,25D. As I think about it in this light for the first time, eating dietary D2 or D3 to regulate our 1,25D is absurd on the face of it.  The vitamin D promoters are said to have derived most of their data from large statistical samples.  They are not likely to be aware of the nuances of of the more recent molecular and genetic research.

    #313056
    Jo
    Participant

    [user=3]John McDonald[/user] wrote:

    It is a tough issue and none of us has the requisite background to work through the microbiology. But that shouldn't excuse us from questioning either point of view and assessing it as best as we can.

    I stopped taking vitamin D as soon as I heard of Marshall's work well over a year before I started MP. Why? I have never fully believed the claims that we need supplemental vitamin D.

    Why do you find it troubling? Because there is profound disagreement between Marshall and the D promoters? Because you don't know to take or not take D? That is reasonable. What would you do if the PhDs were arguing about the health advantages of sun bathing or drinking mineral water? What would you do if the argued about the value of taking St. John's Wart or Melatonin? That is why until I made up my mind I thought it safer to stop taking the supplement. After all, it is said to be a supplement.

    john

     

    Taken from another article posted on the board.

    “Key to the ability of the Marshall Protocol to effectively target biofilm bacteria is the fact that the specific pulsed, low-dose bacteriostatic antibiotics used by the treatment are taken in conjunction with a medication called Benicar. Benicar binds and activates the Vitamin D Receptor, displacing bacterial substances and 25-D from the receptor, so that it can once again activate the innate immune system.[29] Benicar is so effective at strengthening the innate immune response that the patient?s own immune system ultimately helps destroy the biofilm weakened by pulsed, low-dose antibiotics. “

    Apparently whether or not vit D is good or bad for you, it's bad on the MP because too much Vit D means you have to increase your Benicar doses significantly.

    If it works the way this Marshall Protocol article says it does, the less Vit D you have, the smaller a dose of Benicar that is needed to work for you.

    Blessings

    Jo

    #313057
    richie
    Participant

    Hi

    Just as I feel the MP is flawed –I still feel it is “internet medicine –where their site gives way way too much specific medical advice by so-called “experts :” –this report is also flawed in my opinion -With a very little bit of digging one can find backgrounds of all the so-called opposing principles –Just as I feel medicine is best left to medical doctors —Based on my own experience with these illnesses –the author of this report Mark London is listed on the Plasma Science and Fusion Center of MIT site as a System Programmer analyst in the Office of Computer Services –A System Programmer ????????????? –Give me a break !!!!!!!!!!

     

    Richie

Viewing 15 posts - 16 through 30 (of 33 total)

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