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me2
02-22-2013, 02:03 AM
I ran across this site while looking for information on prednisone reduction. The site said that the Marshal Protocol recommended reducing vitamin D intake and sun exposure (I don't have that problem here in Washington State) prior to a prednisone reduction. I am too busy right at this moment to really look into this and I don't know if someone here already has and I missed it. Here is the site that talks about it and has links to other more detailed sites - About the Marshall Protocol (http://bacteriality.com/about-the-mp/)

If someone here has time to follow up on this and report back on how it may or may not be relevant to Wegener's I would be very interested in what others think.

As a side note - after twelve years of battling a severe relapse I seem to be slowly but steadily pulling out of it. I am overwhelmed with the state of my life that I am returning to.
A little worse for wear (from LOTS of drugs and disease) and of course being older- well over 50.

I have lots of friends with age complaints that aren't a lot different from some of mine. I will document more what I have been through and any factors I may suggest that might explain this positive turn of events. I am not out of the woods yet.

I have been in recent weeks following a 'PBS tv doctors' diet advice and I believe it to be helpful but my circumstances are so complicated I cannot report this with any degree of certainty. It may be just co-incidence. My recovery may be purely drug treatment and chance - although my gut, and daily experiences suggest the diet is helpful. The diet is the JJ Virgin Diet.

Yes , that is her name, I know it sounds hokey but she has some very compelling science and massive anecdotal experience to support her position . I will report more here later about my experience with this and experience of several friends with other disorders who seem to be benifitting from this diet. I have not found it hard to follow and I find myself not feeling well when I stray from it - either by a slip up (a conscious one) or an accidental one. The concept is simple- eliminate 7 foods from your diet that JJ has found in her experience to trigger food insensitivity reactions in people
There are many Youtube videos and web site information available for those who don't want to wait for my report that is specific to me being a WG patient.
Kirk

PS -- I still believe there could be natural solutions available to us to help prevent relapse of the disease. I am actively pursing ideas and would love to hear about what others may be working on. One of the ideas I am looking into is quite radical (at least in today's world) but may hold great promise for us Weggies and other autoimmune disorders. I am many weeks away from being able to do my experiment and giving a full report here. It is an idea I talked to Al about by email and he was also looking into it and finding it interesting. Sorry to be so cryptic but when I explain it later you will understand. It may be a blind alley and I do not want to lead anyone down there until I have checked it out myself. (haveing been lead down blind alleys myself by well meaning but ill informed practioners)
I am not a medical professional , nor Batman-like in any way
I wish all of you here in my WG family continued recovery and good health

annekat
02-22-2013, 03:52 AM
Wow, Kirk,

It's great to hear you so fired up about the changes and improvements in your Wegs experience and the ideas you are trying out. I don't have time right now to check all that stuff out but certainly will when I do. I will say that among my friends, and in some other threads on here, there has been a great movement lately toward changing one's diet, according to various theories, in order to modulate the effects of autoimmune diseases and other chronic health problems. Since medical science doesn't seem to be providing us with definitive answers, yet, it certainly seems worthwhile to carefully explore other avenues that are readily available to us, such as diet.

I hope your improvements continue and we hear nothing but good reports from now on!

pberggren1
02-22-2013, 06:03 AM
I'm sorry Wegs has done so much damage to you Kirk. I hope you you can get off pred some say.

I have heard others talk about reducing vitamin D to help get off pred. I will ask my doc about this tomorrow but I doubt he will know anything about it.

Sangye
02-23-2013, 04:39 PM
The Marshall Protocol is a fringe theory. I don't know any holistic doctors who think it's based on good science. On the contrary, they do know that higher levels of Vitamin D help to control many AI diseases.

I haven't heard about the diet. Finding hidden food sensitivities is a good idea for anyone though. Definitely important for those with AI diseases.

pberggren1
02-23-2013, 04:44 PM
Even my Wegs doc said that sounds phony to him. He said us Weggies need extra vitamin D to help with low immune function from the meds and our bones as well.

me2
02-23-2013, 05:45 PM
Thanks Anne. Thanks Phil. Thanks Sangye for the input . I can save my time looking into it and look into other crazy ideas. I'll keep em coming.
Oh, and I'll keep up with my vit D program.

Psyborg
03-01-2013, 01:11 AM
Thanks Anne. Thanks Phil. Thanks Sangye for the input . I can save my time looking into it and look into other crazy ideas. I'll keep em coming.
Oh, and I'll keep up with my vit D program.

I saw this too and posted about it in the Pred reduction thread. I tried to go off Vit D for a few weeks. Got a cold almost immediately lol. I'd suggest ignoring this one ;)

Sangye
03-01-2013, 02:53 AM
Make sure you take your vitamin D with your largest meal, too. It's fat-soluble and is best absorbed in the presence of other fats.

annekat
03-01-2013, 03:30 AM
Make sure you take your vitamin D with your largest meal, too. It's fat-soluble and is best absorbed in the presence of other fats. That is good to know! I haven't been doing that and will try to do so from now on.

me2
03-01-2013, 01:32 PM
This is easy to do. I'm on prednisone , every meal is larger than my last meal.
Just kidding. I have already been doing this by accident. Now it is good to know to pay attention. Many of my meals are very low fat so I'm thinking a small dollop of coconut oil if I'm doing vit D and food with very little fat. I no longer consume any form of dairy. I have become a coconut oil convert. And avocados.


Make sure you take your vitamin D with your largest meal, too. It's fat-soluble and is best absorbed in the presence of other fats.

annekat
03-01-2013, 02:32 PM
This is easy to do. I'm on prednisone , every meal is larger than my last meal.
Just kidding. I have already been doing this by accident. Now it is good to know to pay attention. Many of my meals are very low fat so I'm thinking a small dollop of coconut oil if I'm doing vit D and food with very little fat. I no longer consume any form of dairy. I have become a coconut oil convert. And avocados.

I have recently quit eating wheat and am wondering if dairy should be next. I just started perusing the store shelves for various alternative foods that might be better for me. Coconut oil and avocados sound really good. I take two fish oil capsules every day and am wondering if that might also be a good time to take the Vitamin D. And the D I've been taking comes in a gel cap, which makes me wonder if that is oily, as well, and would help it absorb.

savedbygrace
05-16-2015, 01:04 PM
I'm on prednisone , every meal is larger than my last meal.


LOL!!! Thank you I needed that laugh!!