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fernu
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 Posted: Sun Feb 19th, 2012 20:44
disheartened

Hi, I just discovered MP earlier today (searching for cures for sarcoidosis), and after reading the available materials for a couple of hours I find that I am disheartened by several aspects.

One of the most disconcerting is: MP, while potentially beneficial relative to the target disease, seems to render one unable to tolerate even the most moderate levels of sunlight for many years if not forever. Let me start this thread by asking: Is this accurate?

Sallie Q
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 Posted: Sun Feb 19th, 2012 21:53
welcome fernu
your first impression is off-beam

1) You would be back in normal sunlight between 2-3 (worst case 7-8, I have only seen one reported) years from start. Some people report they are regaining health following the MP while holding down out door jobs and only using the normal protective measures my Dad used to avoid skin cancer.

The alternative is decades of pain and expense from "the disorders of middle age", so it's a no brainer people often prefer a temporary lifestyle change in order to avoid pain present now, also threatening as we get older (& pain is harder to control).

2) the "target disease" is microbial dysregulation of the vitamin D metabolites. The dysregulation is apparently the cause of sarcoid conditions, but it is more insidious... it can cause any of the conditions regarded by last century medicine as 'auto-immune'.

Why is it so? 
The VDR (vitamin D receptor) is a key functionary in hundreds of bodily processes.

Read on, we are all volunteers here (sometimes available, often not), who reply to questions you have not answered for yourself by searching the data site (click on picture of molecule above) or the publicly available threads on the two open sites :)
Sallie



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MP uTube MPsep08 depression69 br.cancer90Bowens05 Sjogrens08| sxCFS,lowAdrenal,ADD,migraine,RA,Stroke Medical myth
fernu
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 Posted: Sun Feb 19th, 2012 22:42
Sallie, thank you for your prompt response!

Another thing that I found curious/somewhat disturbing is that there is a "secret" forum for those actually on mp.

I would think that it would be invaluable to those weighing the pros and cons of mp to at least be able to read these posts. What am I missing? Thanks!

flux21
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 Posted: Sun Feb 19th, 2012 23:02
I have a related question.  It's my understanding the root cause in the Th1 theory is the pathogens' deactivation of the VDR, and the subsequent high levels of free 1,25D.  So I see the rational of using Olmesartan to reactivate the VDR, but not the rational behind limiting exposure to 25D, because no matter how much you limit sun exposure, your body will always have enough 25D available to convert to 1,25D, so the action to "limit" it is mute?  The issue is the D system needs to get fixed via Olmesartan, and you can't have much effect beyond that by altering D exposure?  yes/no/maybe?


Please respond to flux21 in his/her own thread,
http://www.curemyth1.org/forum2/4793.html
Admin



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Current = Acne'89, Depression'00, Dermatographia'01, Diplopia/Blurred Vision'07, Psoriasis'08, RLS'08, Anxiety/Panic'10, SEVERE Crohns'10, Peripheral Neuropathy'11 | pain fingers, fatigue, low cognitive/memory, feet swelling, fungal nails | 25D=23 Oct'11
Sallie Q
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 Posted: Sun Feb 19th, 2012 23:13
fernu
the MPStudySite never struck me as at all secret

Half of it is not visible until you become a member. In the past people were accepted without filling in any particular information about themselves.

Now there is a form you need to fill out and it will take a few days for someone to get around to putting any information you supply onto the MPSS. There are a couple of reasons for this, but the principal reason is to get people's signature lines to contain the same information, without which information people on the support team would be struggling to give responses with any accuracy as to a individual reaction to a particular problem which concerned them.

What you are missing is a lot of sometimes comforting, sometimes confronting, information about other individuals' particular health problems, warts and all :?
Sallie



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MP uTube MPsep08 depression69 br.cancer90Bowens05 Sjogrens08| sxCFS,lowAdrenal,ADD,migraine,RA,Stroke Medical myth
Sallie Q
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 Posted: Sun Feb 19th, 2012 23:22
flux
could you see the rational of using aspirin or willowbark to relieve a headache

and the rational of limiting exposure to your mother-in-law until you get to a time when  you no longer get a headache almost every time you are with her ;)



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Cynthia Schnitz
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 Posted: Mon Feb 20th, 2012 01:01
Fernu, exactly what is your problem with staying out of the sun?  If you are currently basking in the sun in order to feel good, your are feeling good because you are suppressing your immune system.  If you did not feel so bad with TH1 disease, from all the efforts your immune system is going thru to try to win the battle with them, you would feel good without sunbathing.

I have been on the MP for 3 and a 1/3 years and am still avoiding long exposure to direct sun, but I don't bother nearly so much any more avoiding a little sun.

There was a time, up until about a year ago, when the Study Site was closed to new members, so that those people on the MP from about 2007 or 8 to early 2011 were reporting on the Support Forum here on the CureMyTH1 site.  So, if you will go look at posts in the 2008-10 time frame, you will be able to read many MP reports.
http://www.curemyth1.org/forum7/

It is generally better for people on the MP to be able to freely post sometimes embarrassing symptoms on a forum that is not open to the public.  You can also look at the Alumni post here, for those that are not available to you because they are generally posting on the Study Site.
http://www.marshallprotocol.com/forum30/

Cynthia



____________________
MP start 10/08 (no breaks),Spondylitis'97,early Diverticulosis'98,early AMD'08,Calcium anomaly'95,TypeII Diabetes(?)'02,Degenerative hip disease'12, 25D=8.6ng/mL 1/14(preMP 125D/25D=47/43) My progress: http://www.marshallprotocol.com/forum30/13911.html
fernu
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 Posted: Mon Feb 20th, 2012 04:35
Cynthia,

Thank you! I will check out those posts and reports.

Regarding sun exposure, I derive great pleasure from outdoor activities (hiking, bicycle riding,...) and can't image going 3 or more years without being able to enjoy those activities. Also, I do work and can't afford to hide indoors from the sun at all times.

Cynthia Schnitz
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 Posted: Mon Feb 20th, 2012 19:09
Yes, I also love hiking and the outdoors too.  But, during the early part of the MP, you will be in no condition to partake much of that.  I have done a few short hikes locally when I felt up to it.  I could do a lot more hiking now that I am almost over my original lethargy, but I can't because my immune system started to work earnestly on my hips over the last year and a half and just walking to do my shopping has been tough.  But even that is starting to get a lot better and I may start in doing some day hikes soon.

What to do about the sun on these hikes?  You wear long sleeved black shirts of optically dense material, long pants, a broad brimmed hat, and put zinc oxide on all of your exposed skin.  If you are going to be out a long time, black gloves on the hands would be better, as the zinc helps, but is not 100% cover.  I originally started with long sleeved black turtle necked T-shirts.  This was fine during the first 2 summers, but by the 3rd summer my thyroid was working so well, there was no way I could wear these during summer, so I just went shopping 2 days ago for scooped necked long sleeved shirts, and will take some measure to cover the neck area if I am going to be out in the sun for extended time.  I hate sticky stuff on my skin, so haven't used the zinc oxide.

In the end, either your 25D comes down, or it doesn't and you have to reanalyze what you are doing, tho usually the problem is from food.

Cynthia



____________________
MP start 10/08 (no breaks),Spondylitis'97,early Diverticulosis'98,early AMD'08,Calcium anomaly'95,TypeII Diabetes(?)'02,Degenerative hip disease'12, 25D=8.6ng/mL 1/14(preMP 125D/25D=47/43) My progress: http://www.marshallprotocol.com/forum30/13911.html
Sallie Q
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Location: N.S.W., Australia
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 Posted: Tue Oct 2nd, 2012 22:53
fernu
I forgot to point out that quite a lot of people have started and continued MP while working in a day time full time job, so I hope I did not give the impression one should get a night time job before starting. I did know someone who did just that, and likely got too little light in their life!
If you have applied for member or guest member on the MP Study, then I guess you have already looked at the extended progress threads of some of the currently posting sarc patients?
regards
Sallie



____________________
MP uTube MPsep08 depression69 br.cancer90Bowens05 Sjogrens08| sxCFS,lowAdrenal,ADD,migraine,RA,Stroke Medical myth

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