Vitamin D

[Andrea]

Ok I read a little bit about MP and I'm currently trying AP.  My doctor noticed that I was low on D and has me on a suppliment.   I noticed in MP that Vitamin D is bad.  Is this also true for AP and should I be taking this suppliment?

Your thoughts………

p.s.  still herxing and it's been a week although it's been getting a bit better but, not much.

Andrea

[Cheryl F]

Andrea:

While I am sure others will comment on your questions regarding AP and MP and Vitamin D supplementation, I would like to encourage you to use the archives of the old RBF Bulletin Board and do a search on Vitamin D.  Also a search of this new BBoard should turn up posts that would be well worth reading as you are educating yourself so that you may make your personal decision.  The answer is that there is no clear answer.  If you ask anyone who has choosen the MP path, they will tell you that Vit D should be avoided and the lower your Vit D blood levels the better, as it is believed that Vit D is immunosuppressive.  However, many of the most experienced AP doctors recommend high doses of Vit D supplementation, and their patients also report good results.  My opinion is, like so much of this, you just need to do the reading, ask questions here and on the MP site, and make your own choice. 

I hope you find the archived posts helpful, there is a great deal of high quality information sharing, along with some entertaining and sometimes heated discussion on this topic.

Cheryl Ferguson

[Rosemary Perth Aust.]

Andrea I had a severe Vit D problem and was in incredible pain if I went in the sun. so I did try to do what Dr. M said, however I was unable to go off my flax altogether, not only for inflammation but also for memory retentionbecause of fungal problems, but managed to cut down to 8 Flax seed capsules a day instead of 10 successfully. What I found was just needed to increase gradually not just with D, but with everything.  That way you can cope and the body adjusts accoredingly.

I am getting better daily still taking my flax but keep out of the sun just in case, until I fully recover.  This seems to work.  You need a certain amount I am sure. I can eat eggs and fish now also which I could not before.

Everyone is diffferent and for some of us there are things we just cannot do without. This is just my opinion only, but I wanted you to know that I got away with it because I needed it.  This is for your information only.  Others will have other ideas.

I guess we all just have to do what ever we have to do to get there.

[John McDonald]

Andrea – Vitamin D is either good or bad for everyone, not just MP or AP. Trevor Marshall did some computer molecular modeling and determined that dietary D as a supplement is pretty much bad for all of us. There is about a legion or two of D proponents that disagree with him. If I ever relive my life I may get a biomedical PhD and a workstation and see if I can replicate his work. At this point, his evidence is interesting, even compelling, but hasn't yet been poked and prodded and contested by his peers. I strongly suspect that he is correct but my whole point is to say, as a scientist, not a patient, it is real hard to know at the moment. 

But it turns out to be real true and widely accepted that vitamin D is a very potent seco-steroid and powerful hormone in the body. Taking massive amounts of vitamin D could be compared to taking say, prednisone or even anabolic steroids. It isn't the benign stuff that the proponents might lead you to believe. So I wonder just why it is that after about 100,000 years as homo sapiens we now are suddenly deficient of D.

And as a final note: Researchers note that some sick people have low levels of 25D. So they conclude that low D makes people sick. But like so much evidence based medicine, they rarely ask if (1) sickness might cause low D rather than the other way around and (2) whether it is in fact good or bad to supplement. It is a bit like noticing that normal people don't have fevers, so furiously trying to suppress fevers in sick people without considering that maybe fevers are the body's way to kill bacteria and viruses.

After considerations like this, I decided that I could do without taking a vitamin that I am said to make in my skin when needed anyway.

john

[Andrea]

Thanks guys, I am still trying to take ALL of this stuff in and make some since of it.  I guys you can really just play with it and see what works and what doesn't, trial and error of sorts.  Thanks again for the feedback.  He has me taking B12 injections and Vitamind D as well as Cod Liver.  I will try that for now, see if it works and if doesn't we shall play with the combination or try eliminating one.

 

[John McDonald]

In today's news I see this headline “Vitamin D may help curb breast cancer, study finds” and in the first paragraph I read “Breast cancer patients with low levels of vitamin D were much more likely to die of the disease or have it spread than patients getting enough of the nutrient…”

This is another one of those cool studies in which they never ask if perhaps the cancer is causing the low D. Evidence based medicine, that is what they call this, must be the weakest most embarrasing branch of science there is. There are papers that strongly suggest that infection causes a rapid conversion of 25D, the type they measure, to 1,25D the type that they don't commonly measure. So it is quite common for us sickies to have lower than normal 25D, but as a result of our disease, not the other way around. In fact if we supplement like crazy often the physician is puzzled because he still can't get our dietary D up to what he considers normal.  Gee, duh.

Uh, I am a bit cranky today. I hope I am better by the time Cricket and the girls get home.

-john

[Michele]

Hi Andrea,

My first AP doctor in VA told me to get my vitamin D from sunshine when I questioned the steroidal aspects of oral supplements. Dr. S in IA didn't worry much about dietary needs, but that is perhaps more his era of training.

MP has a therapeutic probe to lower your vitamin D, but I don't recommend purposefully dropping your D for long unless you are seriously considering moving to MP, because I have found that without the Benicar, and a lowered D state, the herxing increases beyond tolerable.

Dr. Brown used low dose steroids if necessary with AP, if I recall this right. I wonder if the dietary D acts like a steroidal replacement.

Hopefully someone who is a qualified biomedical PHd that will continue to seriously study Marshall's work!

I've been on Benicar for 6 weeks and went to my doctor today for a Strep test. His first comment was, “you are getting around a lot better.” 😀

I'm still a newbie totally to the antibiotic approach to disease, but herxing certainly shows me that I'm loaded with L-forms or cell wall deficient bacteria.

So far, progress has been glacial. I think the hardest part about looking at treatments for chronic illnesses for the first time is getting over the duration of time a treatment has to last and how long it takes to work.

It's up and down, so celebrate those good days every chance you get. Then after awhile, more good days will replace bad ones.

take care,

Michele

[Michele]

Interesting Vitamin D link:

https://www.who.int/bulletin/volumes/85/5/06-039446/en/

It looks like a year ago that the World Health Organization was also considering the plusses and minusses of Vitamin D / sunshine without conclusion.

My guess is that it will be hotly contested for quite a while. I don't like being on the side of a sicko while the debate goes on…As Cheryl said earlier, read as much as you can and make your own decision.

I really don't understand why other biomedical PHd types can't verify or deny Marshall's molecular modelling. Someone has to be bright enough to understand his science to have a discussion about his model and the applications.

Just some more mulling around about this since Vitamin D was a headliner today.

Michele

[KAnderson]

I had some interesting information relating to Vitamin D in that those with Arthritis are usually in short supply of the stuff. I take it with calcium

K

[John McDonald]

But why are they short, and of which variety of vitamin D? The physicians aren't rigorous about this. They notice that a sick patient has low vitamin D (25D) and conclude that the patient is sick because their vitamin D is low. Surprisingly the patient often fails to obtain higher 25D after extensive supplementation. But the active metobolite of vitamin D is 1,25D. It is the real deal, a seco-steroid that modulates many body hormone functions such as the gender hormones but also immunity and muich more.  1,25D is active in trascribing hundreds of genes and so is a trigger for many human proteins.  The real deal 1,25D is easy to generate in skin exposed to sunlight. The far less active dietary D, known variously (and approximately) as D2, D3 and the resulting 25D is fat soluble and has a very long half-life, as much as a couple of months.  The real deal 1,25D has a much shorter half life of about 6 hours. There are papers and now in the MP study a huge body of evidence that shows that rheumatic patients rapidly upconvert 25D to 1,25D.  Something about the disease causes us to have TOO MUCH 1,25D with many published adverse effects. But it is a little more difficult and more expensive to test for 1,25D so physicians left to themselves just about never do. They assume that if they test for 25D (easy) that they have likewise measured 1,25D (hard). You can think of 25D as the firewood (precurser) to the real-deal 1,25D, the fire. So you and the rest of us test low in 25D because our body is rapidly upconverting it to 1,25D, too much 1,25D as part of the disease process. Marshall argues persuasively that it is deleterious to supplement with 25D. According to his work with computer molecular modeling, 25D antagonizes (disables) the vitamin D receptor which shuts down various immune responses, blocks the transcription of many needed proteins and disregulates our 1,25D balance.  I am not aware of anyone either confirming or disproving his results, but he is getting plenty of attention for this work amongst the biomedical research community.

According to Marshall taking 25D is like taking an over the counter steroid with similar results. Short term benefit and serious long term disadvantages.

-john

 

 

[Todd WI]

This Vitamin D issue is very disturbing.  I'm still trying to wade my way through it and went actively looking for opposing views.  Here's a site “taking shots” at MP:

http://stuff.mit.edu/people/london/universe.htm

[John McDonald]

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. We make vitamin D in our skin. How many vitamins are there that you make on your own? Given that we can make our own D, how could a million years of evolution fail us so badly in the last half of the 20th century? So at that time I ate a healthy diet and left the D to itself. 18 months later when I started the MP and thus had my D's tested, both values were somewhat high. So no problem right? And now after 2.5 years of scrupulously avoiding vitamin D my own serum levels seem to have balanced out at about 12 ng / ml. It seems to be well regulated by my body now as it won't go up or down much. I am not aware of any, absolutely any D defficiency issues and I have had tremendous progress with my health. So who are the pro D advocates, what are they selling and how many of them are there? Why don't they measure the 1,25D component, the active seco-steroid when they perform their studies?

The link to the MIT guy is worth looking at for a strongly antagonistic view of Marshall's work. But this borders on personal attack doesn't it? What motivates this guy? I heard that his wife tried the MP and had a bad experience. This guy has been on a crusade ever since. What a way to spend your time. I was aware of this guy's web page when I started MP and bits of it are troubling. He is very articulate. But that doesn't change my opinion that I know of no disease and treatment model that is so complete and so throroughly predictive as Marshall's. Marshall may be wrong, I don't have the bio background or time to prove so or not. But the protocol has been an astonishing, eye-popping boon to quite a few of us early adopters now. I will keep drinking MP kool-aid until I don't like the results.

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

 

[Michele]

Hi Todd,

Kudos to you on your digging. I also have done some digging but did not pull this one out of the trench. Personally, the vitamin D issue is also disturbing to me because it makes a huge difference which side of the coin flips up with the correct answer! So I do find it interesting to read both sides of the argument.

But, who is this guy? How valid is his research? He has an MIT address, and on another link he claims to have fibromyalgia and that he is not a doctor. Looking at MIT's directory he's a Systems Programmer/Analyst in the Plasma Science and Fusion Center.

I read a fair amount of your previously listed link and did note that he found some positive things to MP. He thought the anti-inflammatory effect of Benicar could help folks with RA. Hmmmm. He did seem to have many objections to the Vitamin D issue and the affect of light. I guess he'd have to actually experience a sunflare to understand…so I rather doubt he was on the MP himself. Some of his conclusions, IMHO, would be different had he personally experienced an AP herx or passed through the MP Benicar only phase.

Overall, I'm just glad to see some people really thinking about this! And a systems analyst is just as welcome as a musician, mechanic, engineer, or physicist! So thanks again for sharing his link!!! There is a lot there to digest.

Most unfortunately, it's more than a two sided coin to toss, too. There are always the specialists who are giving people DMARD's and openly stating they don't know why they work or what causes “the chronic disease.” That plain frightens me. 😯 But maybe my amygdala is overstimulated today because I've left my sunglasses off. (I need a sarcasm face here!) What I mean by that is his examples of amygdala stimulation were so limited.

At least AP and MP clearly identify a “root cause.”
Pour the Kool-aid!

Michele

[Todd WI]

Hi John,

I?m naturally suspicious of information I get on the internet.  If the information is important to me I actively seek out opposing views, this is how I stumbled across the MIT guy?s site.  I can?t speak to his motivation, but his site didn?t strike me as a personal attack on Marshall. Regardless of the motivation behind it, I think the site has some valuable information to consider. 

Why is the issue disturbing? Well to start, both sides are like cults and both say that very bad things will happen to you if you don?t drink their cool-aid.  For me AP was a no-brainer, because it had huge upside potential for a small risk. The MP cult would have you believe the same about MP, while the vitamin D supplementation cult would have you believe the same about vitamin D supplementation. The obvious problem is they have opposing views which suggests the risk of either may not be all that small. Meanwhile, I?m not even fully convinced that the issue is black and white. It?s at least conceivable that vitamin D supplementation is good in some ways and bad in others.

Your point on simply choosing not to supplement is a good one, however my AP doctor suggested I use this particular supplement so it?s no longer in the same category as sun bathing or mineral water.  I actively sought out a doctor that would prescribe AP and found a wonderful doctor thanks to the RBF members. My biggest initial concern was that he might be too alternative for me and that he would want me to take a bunch of supplements.  This actually happened and I am taking a bunch of supplements. Why?  I came to trust the doctor.  He?s a card carrying member of the vitamin D cult, and there?s no doubt in my mind that he?s joined it because he truly believes it will help his patients. For now I?m drinking his kool-aid, and I?m making good progress. 

I do appreciate that you talk candidly about your experiences with AP and MP.  I?m glad to hear that you have had astonishing results on MP and hope that continues.  I may eventually follow a similar path. 

Todd

P.S. what did you mean when you said that Marshall's theory “…so throroughly predictive”?

[Todd WI]

Hi Michele,
 
I?m glad to hear I?m not the only one that is disturbed about the vitamin D issue and I?m also glad to see others are really thinking about this. I don?t know anything about the MIT guy, but I thought he brought up some interesting issues which is why I posted the link.  
 

Some of his conclusions, IMHO, would be different had he personally experienced an AP herx?

 
Possibly, but I also wonder if we are too quick to label everything under the sun (no pun intended) as a herx. I suspect some of these things are either side effects or drug interactions…

 
Todd

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