Vitamin D Receptor Dysfunction

[snowathlete]

hi everyone, i read this thread a while ago, but this new paper may be of interest to people.only the first two pages is available i think:
Immunostimulation in the treatment for chronic fatigue syndrome/myalgic encephalomyelitis.

I know this is a controversial topic. I dont really know what to think yet about this, but it seems from the into that these guys at least dont think that the illness is psychosomatic, and I think the ideas around metagenomics are interesting and worth exploring. Thoughts?

 

[Ema]

hi everyone, i read this thread a while ago, but this new paper may be of interest to people.only the first two pages is available i think:
Immunostimulation in the treatment for chronic fatigue syndrome/myalgic encephalomyelitis.

I know this is a controversial topic. I dont really know what to think yet about this, but it seems from the into that these guys at least dont think that the illness is psychosomatic, and I think the ideas around metagenomics are interesting and worth exploring. Thoughts?

Well, it's Trevor Marshall so I assume that they will be telling us all to avoid Vit D and take Benicar...

 

[ukxmrv]

The marshall protocol justs keeps getting bigger as he discovers that his earlier sun avoidence doesn't work.

 

[Hip]

The marshall protocol justs keeps getting bigger as he discovers that his earlier sun avoidence doesn't work.

Is sun avoidance now not part of the Marshall Protocol?

 

[Lotus97]

When I take large doses of Vit D (above 5000 IU/day), my active Vit D level (1,25 D) goes out of control high.

Usually the body keeps the 1,25 D tightly regulated and as such there isn't much sense in measuring it. In someone with properly functioning Vit D receptors, the level should stay around 30 no matter where the 25-OH level is.

When my 25-OH D level climbs much above 50-60 through supplementation, this regulation mechanism seems to go off track and my 1,25d level climbs upwards of 80. This high of a level is supposedly suppressive to the immune system and contributes to inflammation - the exact opposite of what most of us want.

I suspect Vit D is another Goldilocks situation...both too much AND too little are not good for immunity. I think a lot of people may be shooting themselves in the foot right now with megadosing Vit D especially if they are not measuring their 1,25 D levels as well. I personally think a 25-OH level of more than about 60 is too high. I think most doctors that say otherwise are just parroting the current Vit D trend rather than having any in depth knowledge of the effects of Vit D on illnesses like ours.

Ema

In my recent vitamin D research I came across a post of yours from a little under a year ago where you thought you needed higher levels of 25 hydroxy and 5000-10000 iu to reach that. You now seem to have a different opinion so I'm curious what changed your mind? I don't want to post your old post here because it might make things more confusing, but this is what I'm referring to:
http://forums.phoenixrising.me/index.php?threads/vitamin-d-question.18258/page-2#post-278407

 

[Lotus97]

Hi Hip, thanks for your posts here. Bryan Rosner had chronic Lyme for many years, and is now fully recovered. He has written several books on his Lyme journey, and credits elements of the Marshall Protocol as being very important for his success. During his sojourn, he took fairly extraordinary measures to protect himself from sun exposure, as even a little bit would set back progress he was making at certain junctures.

I believe part of the Marshal Protocol involves taking antibiotics, I think long-term. I think this has been especially controversial, because some who've tried this protocol became extremely sick, and several have reported coming close to dying. The criticism on some of the Marsh Protocol boards is that there's no acknowledgement of some of these dangers, and it's generally recommended that eveything would be OK if they just pushed through rough spots.

It would seem there's a lot more to be discerned about this whole topic, And as with anything we pwCFS do, we should all proceed with caution.

Edit: I just saw the following on Mercola's website (which I tend to agree with):

The Antibiotic Issue
Taking antibiotics for years, as directed by the MP, is just ludicrous and is an invitation for disaster.

I was prescribed Clindamycin last year and herxed on it. After doing some research I got the impression that Clindamycin was part of the Marshall Protocol. I have Lyme so I was thinking maybe that's what caused the herx, but I have no idea really.

 

[Lotus97]

When I was on candida treatment a few years ago my doctor at the time told me Benicar could help with the herx. I'm not sure, but I think it had something to do with inflammation. I read that weight gain was one of the side effects of Benicar so I decided not to take it. One source even said that people with CFS are especially prone to the weight gain side effect of Benicar. I'm not trying to discourage people from trying it. Everyone is different and prescription drug side effects usually only affect a small minority of people. I'm still dealing with weight gain from various sleep meds so I didn't want to take a chance.

 

[Ema]

In my recent vitamin D research I came across a post of yours from a little under a year ago where you thought you needed higher levels of 25 hydroxy and 5000-10000 iu to reach that. You now seem to have a different opinion so I'm curious what changed your mind? I don't want to post your old post here because it might make things more confusing, but this is what I'm referring to:
http://forums.phoenixrising.me/index.php?threads/vitamin-d-question.18258/page-2#post-278407

I did change my mind on Vitamin D.

I accidentally got the *wrong* Vitamin D test during some routine labs, the active form 1,25 D, instead of the storage form 25-OH. It came back elevated despite "optimal" 25-OH levels of 70-90 and so I started trying to figure out what might have gone wrong. I was especially concerned because having high 1,25 D levels looks to be immune suppressive.

Here are some links to things I found useful:

http://arizonaadvancedmedicine.com/articles/immune_system_dysfunction.html

http://perfecthealthdiet.com/2010/08/vitamin-d-dysregulation-in-chronic-infectious-diseases/

So I stopped my Vit D supplementation and my 25-OH level fell down to 30 or so and my 1,25 D level also fell to about 35. Since then, I've gone back on Vit D supplementation (approx 2000 to 4000 IU/day) which keeps my levels around 50. That also seems to keep the active 1,25 D in the appropriate range as well for me without letting the storage 25-OH get too low either.

I think it is fine for people who have a "normal" VDR to take as much Vitamin D as they like because their body will keep the active form tightly regulated in the proper range. But I think it is a real problem (that will likely come back to bite some of these high D recommenders in the bottom) not to test 1,25D at least once when supplementing with D over 5000 IU/day to make sure that the VDR is working correctly.

Ema

 

[Gijs]

Amy D. Proal, Paul J. Albert, Trevor G. Marshall, Greg P. Blaney, Inge A. Lindseth

Abstract
Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) has long been associated with the presence of infectious agents, but no single pathogen has been reliably identified in all patients with the disease. Recent studies using metagenomic techniques have demonstrated the presence of thousands of microbes in the human body that were previously undetected and unknown to science. More importantly, such species interact together by sharing genes and genetic function within communities. It follows that searching for a singular pathogen may greatly underestimate the microbial complexity potentially driving a complex disease like CFS/ME. Intracellular microbes alter the expression of human genes in order to facilitate their survival. We have put forth a model describing how multiple species—bacterial, viral, and fungal—can cumulatively dysregulate expression by the VDR nuclear receptor in order to survive and thus drive a disease process. Based on this model, we have developed an immunostimulatory therapy that is showing promise inducing both subjective and objective improvement in patients suffering from CFS/ME

http://link.springer.com/article/10.1007/s12026-013-8413-z