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Dr Trevor Marshall
Research Team
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Posted: Tue Mar 17th, 2009 01:19 |
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You all know that the Vitamin D Council and myself have very different goals in life, but one thing we are agreed upon - it is important for everybody to keep track of their 25-D, and monitor their ingestion of the steroid.
The Vitamin D Council has arranged with ZRT laboratories to provide 25-D testing using ZRT's pin-prick test kits. You prick your finger with a special thingy, and then squeeze some drops of blood onto a sheet of special paper with circles marked on it. The paper is then sent off to ZRT by ordinary letter mail, and they mail back the results to you two weeks (approx) later.
The test is not available to NY residents for legal licensing reasons, and Californians would also be locked out except that Dr Cannell, the head of the Vitamin D Council, has offered to write prescriptions so that California residents can use the ZRT services.
The cost is currently $65 per kit, plus the cost of shipping the kits to you. This covers everything, even the cost of return postage for your blood spots.
ZRT claim the test is accurate, and since Liz and I both had our blood drawn just a few days before we sent off these test kits, we figured we would see if the numbers came out the same. They did. My own blood test said "less than 4ng/ml" and Liz's was 14ng/ml. The ZRT tests came back at 3ng/ml for me, and 13ng/ml for Liz.
So it would seem that (at last) we can all easily collect data so that our Docs (and us) can keep a closer eye on the 25-D blood values as we gradually work down our body-storage, and also figure out what foods to avoid 
The page where you order the test kits is at:Edit to fix link: Russ posted September 7th 2009.
http://www.zrtlab.com/vitamindcouncil/home-mainmenu-1.html?page=shop.browse&category_id=1&vmcchk=1
Edit to add: Russ posted September 7th 2009.
FYI, the link in the original post is returning a "web page cannot be found error". Here's an updated link that seems to work:
http://www.zrtlab.com/blood-spot-individual-tests/view-all-products.html
Apparently they will also mail results to International customers
Also, I noticed that in addition to 25D, another blood prick test you can order from this lab is CRP. I believe that Dr. Marshall has said that CRP can be a useful marker as it is released with some of the anti-microbial peptides.
Last edited on Mon Sep 7th, 2009 21:51 by
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Linda J
Member in Phase 3
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Posted: Tue Mar 17th, 2009 05:09 |
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| Is this something that would be covered by insurance, the way a normal vitamin D test is, or would it have to come out-of-pocket?
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Lyme thyroiditis IBS MVP PTSD MCS 125D63 SAM-e Claritin probiotics silymarin magnesium 5htp homebound low lux NoIRs 25D8 (Oct08)
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Dr Trevor Marshall
Research Team
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Posted: Tue Mar 17th, 2009 09:13 |
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I would be pretty sure it would be out-of-pocket unless you have one of the most flexible insurance policies. But by the time you add up all your co-pays, I suspect most people would be better-off.
Plus, there is the convenience...
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Karon
Member in Phase 3
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Posted: Tue Mar 17th, 2009 18:29 |
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Good Morning Dr. Marshall
This is VERY exciting indeed! It makes me feel like the World is waking up.....You must be so happy.....From one human to another I am so very proud of you! I can count on two hands how many times I have said that to people , (other than my family).
Just a quick note:
Jake is still doing VERY very well. He has already learned to recognize his IP's and take an extra 20mg beni and/or put the glasses on inside. His home hospital schooling is going so well, better than ever being in public school outside. He is currently PH1 50 mgs eod.
Just to listen to his reading alone (it has a whole different flow) is amazing.
Love to you and your awesome wife.......
I know she is the one behind the scenes making all of your work possible.
Have a great day! 
Karon, and Little man Jake
in CA.
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LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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garyv
Member in Phase 3
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Posted: Tue Mar 17th, 2009 18:38 |
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There's a project of the non-profit GrassrootsHealth.org called Daction (affiliated with Cannell's Vit D Council) which is looking for sponsors to test 25(OH)D twice a year at $30/test using this same ZRT lab and paper blot testing method.
The only catch seems to be that you have to provide some health history and answer a few questions about milk and supplement and sun exposure, which is entered online and takes only a few minutes. Also, it seems they only let you do the test 2x per year.
Go here to sign up: http://www.grassrootshealth.org/daction/index.php
Since I'm currently getting tested when I see my doc every 3 months, and both Quest and LabCorp are "in network" for my insurance plan (Anthem), I pay only $32 for the standard test until I meet my deductible. After that I only pay 10% co-insurance, or $3.20.
Since I'm making diet adjustments to get my D down, I signed up with Daction to get a test in-between doc visits to monitor my progress a little better. It's good to know that this is an accurate test.
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DxOsteoporosis/osteoarthritis/Raynauds/paresthesia/tinnitus 1,25D69 Ph1Mar08 Ph3Jan09 25D44(Apr09) no meds or light avoidance, covered in direct sunlight only
"Fear not the path of truth for the lack of people walking on it.” –Arabic proverb
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foxtuck
Member
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Posted: Sun Mar 29th, 2009 13:53 |
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Even though these people seem to be building a case around a preconceived idea, I joined their study to receive the kits at a discounted price. I have not gotten a Dr. on board yet, but also have no health insurance so it makes sense for me.
Please note, anyone who signs up prior to April 1, 2009, will receive the kits at the promised price of $30. After that, they will be going to $40. Still a fair price, evidently, but I wanted to give everyone a heads-up.
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garyv
Member in Phase 3
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Posted: Sun Mar 29th, 2009 16:07 |
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My Feb. 17 ZRT test showed a D3 value of 29 ng/mL, while my Quest result one month prior was 35 ng/mL. I was pleased to see that, but the ZRT test also showed my D2 value at 6 ng/mL. 
I found this interesting, since my Quest tests for the past year have consistently shown my D2 value at <4 ng/mL. And, if I'm not mistaken, D2 is derived primarily from plant sources (vegetables), and I've eaten no veggies considered significant sources of D2 for several years (I mainly eat raw leafy greens).
I suppose it's nothing to get too excited about since I'm aware that such a small discrepancy could be due to inherent variability in the lab testing method. So, I'll continue my dietary adjustments and just note this as a curiosity, for the time being!
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DxOsteoporosis/osteoarthritis/Raynauds/paresthesia/tinnitus 1,25D69 Ph1Mar08 Ph3Jan09 25D44(Apr09) no meds or light avoidance, covered in direct sunlight only
"Fear not the path of truth for the lack of people walking on it.” –Arabic proverb
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Rico
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Posted: Sun Mar 29th, 2009 16:26 |
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You can also find ergocalciferol (D2) in beer - my overall Vitamin D level increased after I had increased beer consumption
Last edited on Sun Mar 29th, 2009 16:27 by Rico
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No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)
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garyv
Member in Phase 3
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Posted: Sun Mar 29th, 2009 16:29 |
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Thanks, Rico, but it's been 20 years or more since I've indulged! 
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DxOsteoporosis/osteoarthritis/Raynauds/paresthesia/tinnitus 1,25D69 Ph1Mar08 Ph3Jan09 25D44(Apr09) no meds or light avoidance, covered in direct sunlight only
"Fear not the path of truth for the lack of people walking on it.” –Arabic proverb
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eClaire
Member in Phase 2
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Posted: Sun Mar 29th, 2009 20:59 |
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Hey,
I watch my vitamin D intake very closely. Usually...none. Occassionally a cupcake or something, but only rarely. Same for folic acid. I have been having some Klondike bars lately (no egg, no mention of Vit D, which seems to comply like yogurt and cheese...except, of course, for the sugar). This was the reason for wanting to do the 25D test...to see if the natural D in the milk was raising my 25D. However, the dive in energy preceded the ingestion of the Klondike bars.
I cannot afford the home test. However, I don't think my doctor has any trouble ordering the test for me and the lab is right near my home.
Mostly I eat a lot of chicken soup (homemade), salad with chicken from the organic chicked used to make the soup (and homemade chili), cabbage, broccoli, oatmeal, and craisins (in salad and oatmeal), and also cheese or sour cream or yogurt on a daily basis. Currently I am eating to keep my weight from dropping below 120lbs, as I am 5'5" and already down to a size 6 pants. My frame keeps me from wearing a smaller size, but less than this and people really start to worry about me. I have lack of hunger IP (and the Klondike bars were a way to pack in some extra calories and make eating fun again).
Also, Dr. Marshall mentioned elsewhere in this thread is the point that I do get palliation from Benicar when it comes to neuro sxs from light exposure. Mostly I avoid daylight exposure, and while Benicar used to help palliate neuro sxs from florescent exposure; I no longer have neuro sxs from florescents (unless I have first been exposed to daylight).
Same issue with Mino. More frequent dosing of Mino increases some sxs to the point that it is not worth it while decreasing other symptoms. I think it may decrease some light related neuro symptoms, but it increases pain, plaque on teeth, ear wax, etc., which makes me think that it increases rather than slows the the killing of CWD.
Thanks for the input!
Claire
Last edited on Sun Mar 29th, 2009 21:01 by eClaire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Dr Trevor Marshall
Research Team
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Posted: Sun Mar 29th, 2009 21:05 |
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I don't think that normal (occasional) exposure to daylight has any significant effect on the 25-D levels. Upregulation as one heals is precisely that - metabolism getting back to normal (note that I am talking about 'healing' in bloodwork terms here - usually 5+ years).
It is important to keep an eye on the 25-D as you just never know what is in everything that you are eating, and so much is 'fortified' these days.
A high level of 25-D is going to give instability, especially if the ingestion is ongoing.
Last edited on Sun Mar 29th, 2009 21:06 by Dr Trevor Marshall
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Deedee
Member in Phase 2
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Posted: Tue Mar 31st, 2009 00:38 |
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To clarify, are you saying that D25 is not significantly increased from "normal" sun exposure for all of us or just those that are 5 plus years out with normal blood work?
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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eClaire
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Posted: Tue Mar 31st, 2009 00:56 |
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There's where my post went! My last post was meant to be on my own PR. I guess I had this link open and thought I was posting to my own PR. "Mystery solved." (Pink Panther)
Good to know about the 25D levels and light exposure (to tuck away later when I am better and can tolerate it and my labs check out).
I was simply pointing out that neuro IP from sunlight exposure is the only time that Benicar seems to palliate anything for me through an increased dosing strategy. Benicar has never been something that would palliate IP sxs for me from the start. The more I take the worse I feel and that was even true with the near non-sleep I went through for months in the beginning. People told me to take extra Benicar at bedtime and that just made matters worse. It still does not work.
For someone whose immune system seemed nearly shut down (me), Benicar has really gotten things going again at a fairly fast clip. (So I'm not really complaining; just stating the facts.) That I am still so sick is probably a measure of just how sick I was pre-MP.
I got the 25D test ordered for today, but it is so bright out that I just could not go outside. (Have to wait for the morning when the light is not so intense.)
Speaking of the 23 D test...how often do you recommend that we get tested Dr. Marshall? My diet stays pretty similar (and pretty organic) and so I haven't worried once it dropped. Adding the Klondike bars to my diet made me want to do the test. (They were an effort to make eating fun again and keep me from losing even more weight.)
Can I do the tests when my diet changes in some significant way or ought I do it monthly with my other monthly tests? (I do monthly tests now because of my kidney labs. Previously I had my labs tested every 6 months.)
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Deedee
Member in Phase 2
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Posted: Tue Mar 31st, 2009 01:20 |
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Claire, I hate to tell you this....my husband was eating Klondike bars so I emailed them and asked if there was D in the ice cream. They said they use fortified milk to make the ice cream.
Maybe you could buy an ice cream maker and make your own.
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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eClaire
Member in Phase 2
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Posted: Tue Mar 31st, 2009 02:06 |
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| Darn DeeDee. Thanks for the info. I will stop eating them immediately! Claire
____________________
34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Dr Trevor Marshall
Research Team
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Posted: Tue Mar 31st, 2009 02:43 |
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how often do you recommend that we get tested Dr. Marshall?
It depends on the level. If your 25-D consistently tests below 8ng/ml then every 3-6 months should be OK, but if you are hovering in the teens, I would think every month or two to track the changes you are making to your diet.
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kenc
Member in Phase 3
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Posted: Tue Mar 31st, 2009 08:41 |
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eClaire,
During the first 2 1/2 years or so taking Benicar I got symptom relief from stopping it. However, last year even reducing the dose resulted in an increase in symptoms (ex. frequent loose stools, abdominal pain, gas and flatulence). I stopped Benicar when I was in the hospital at the beginning of this year. It was a disaster. I had horrible neuro symptoms (i.e. lost my vision and my ability to do arithmetic, spelling and more). Only by resuming Benicar was I able to restore those neuro functions. Also in the hospital, I had a day and one-half of atrial fibrillation which stopped within an hour of resuming Benicar. I assume the symtoms continued after stopping Benicar because the bacterial load had been reduced.
So it appears the influence of Benicar changes over time. During the first couple of years its role as an immune system acivator is dominent. Later its role in reducing the symptoms of the activated immune system becomes dominant.
Ken
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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k
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Posted: Tue Mar 31st, 2009 09:08 |
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It's hard to get my doc to consent to 25D test more than every about 10 months. My last one was 12.8. The US self-test is a bit expensive from Australia, but I could probably manage it financially occasionally.
I am very rigorous with my diet. And on a regular basis recheck all foods I eat. (Also cover up very conscientiously). The only dietary change I could make would be to further reduce dairy product consumption (which consists of low fat cheese, small amount of low fat milk in tea once/day, and occasional butter). But in the thread on Vit D comment on butter, I recall Dr M commenting to keep up consumption of dairy products where possible.
But I take reassurance/solace from the fact that I continue to herx plenty. (And will keep working on my doctor for more regular D tests).
regards, kLast edited on Tue Mar 31st, 2009 09:09 by k
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CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept09:10 NoIRs cover-up low lux home lite exp r/t to work
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Deedee
Member in Phase 2
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Posted: Tue Mar 31st, 2009 14:06 |
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I am now confused in regard to how much "normal" sun exposure contributes to high D25 levels? Is the problem primarily with diet? I have been on MP for 8 months and have realized many improvements. I am not as sun-sensitive as I was in regard to sunlight bothering me. I dropped back to Phase I while waiting for my BUN to return to normal range and will then start back ramping, but more slowly. Is sunlight a significant source of D25 when one covers up? I know the new guidelines for sun exposure say sunlight exposure depends on one's tolerance, but I am curious about how much D25 in made by normal sun exposure?
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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Dr Trevor Marshall
Research Team
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Posted: Tue Mar 31st, 2009 14:21 |
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For a sick person, sunlight does not add to 25-D storage because any Vitamin D from irradiation will be converted directly to 1,25-D within the keratinocytes, leaving negligible 25-D to be accumulated.
With 'healthy' people the situation is a little less clear. There are two studies of sunscreen in Australia and Spain which showed sunscreen made little difference to the 25-D levels, even with a large cohort size. This would tend to indicate that (1) the 25-D is not dependent on UV alone (which is indeed the case) and/or (2) that the 25-D from the keratinocytes is not being stored, and/or (3) that the keratinocytes' 25-D is being converted straight to 1,25-D.
My best guess at this point is that normal daily outdoors exposure does not raise 25-D levels very much at all. I am not talking about sunbathing or tanning beds, just normal, clothed, exposures. I base this on the concentration gradients of the D-metabolites between the plasma and cell cytoplasm.
So, IMO, diet is the major contributor to blood 25-D levels in Homo sapiens.
Within the cells, the D-metabolite control system described in figure 1 of my Bioessay regulates 25-D concentrations to about 1-2 nanomolar.
The malaise which MP patients experience associated with photosensitivity is more likely due to 1,25-D or sundry cytokine/hormonal alterations caused by the irradiation.
ps: there is an elegant study showing that neither ingested Vitamin D or irradiated light is necessary for normal growth and reproduction of fish at:
http://www.ncbi.nlm.nih.gov/pubmed/9675700
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