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Dr Trevor Marshall
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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

Linda J
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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?

Dr Trevor Marshall
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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...
 

Karon
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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! :cool:
Karon, and Little man Jake
in CA.

garyv
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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.

foxtuck
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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.

garyv
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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. :shock:

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! :)

Rico
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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

garyv
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Thanks, Rico, but it's been 20 years or more since I've indulged! :D

eClaire
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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

Dr Trevor Marshall
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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

Deedee
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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?

eClaire
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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

Deedee
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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.

eClaire
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Darn DeeDee.  Thanks for the info.  I will stop eating them immediately!  Claire

Dr Trevor Marshall
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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.
 

kenc
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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 

k
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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, k

Last edited on Tue Mar 31st, 2009 09:09 by k

Deedee
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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?

Dr Trevor Marshall
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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
 

Deedee
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Thanks for the clarification.  Have a great day.

eClaire
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Thank you Ken. 

I expect my reaction to everything, including Benicar, to change over time as my own personal eco system changes on the MP, and so I keep an open mind about re-trying everything I have stored in my MP tool kit. 

I appreciate hearing from people, however, who confirm what I expect will happen...sooner or later, I'll start responding to Benicar like most other folk.  (I'll be so glad when that happens, as I hope that means I will have turned the corner on this illness.)

Thanks again, Claire

kenc
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Could the sunshine be stimulating the production of 1,25-D as a local immune response to repair the UV radiation damaged skin rather than the sunshine providing a way to produce and accumulate 25-D for some future need?  If it does both, where is the evidence for the latter?

Last edited on Tue Mar 31st, 2009 21:43 by kenc

Kas
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Does this mean, that after about 3 years of being on Benicar, I should be able to tolerate a bit more 'normal' sun exposure than in the early days?

I find I now do not need my indoor Noirs - even find them too dark in my classrooms, but still mainly wear them there due to the flourescent lighting, and I also find I am fine with driving to and from work or stepping outdoors without gloves or face coverage or wearing sandals( in the warm weather), but I do still use Kabana cream on exposed skin, and I still do wear my darkest Noirs in bright light. With all of this, my felt IP's have not been different at all. However, as I slowly increase my abx, I realise things could change up and down here.

Still, it is rather a nice thought to be able to be less of a vampire than before, for now!!! I like the fact that my students see my eyes more often and it certainly does make a difference when you talk to people to actually look them in the eye!

I do not test my 25D too often, as it has been consistently so low ( not even readable) for so long now, and I am very vigilant about what I eat. I have even stopped testing my way below normal 1.25D, as I know it makes no difference on the MP. So, for me, every 6-9 month testing seems to be in order.

Last edited on Wed Apr 1st, 2009 14:57 by Kas

JanEE
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My experience with light sensitivity was of it lessening gradually and was finally gone when, like most of you, I found I had trouble seeing in the very dim light indoors.  At the end of phase 2, because I had been feeling so well, I even tested the limits by being in the sun at a fiftieth anniversary party for my daughter and son-in-law.  I suffered no ill effects at all.  In fact I felt great and thought this was truly the beginning of being completely well.  However, I didn't consider it an invitation to be out in the sun and didn't push it by continuing to be outside like that.  I went right back to my comfortable dim light in the house, my "uniform" of covered clothing and always wearing glasses when driving somewhere.
 
Several months later, and on phase 3, it became a different story.  I don't know why it took several months into this phase to hit me, but I began to have more IP than ever.  While my light sensitivity didn't return anywhere near full force I have found that my outdoor sensitivity can increase slightly on the days that I am having more IP.  It stays the same in the house.  Even my levels of 25D have been gradually increasing, but with no change in diet or exposure.  In fact, I've had even less exposure outdoors than before as Meg had told me I shouldn't be working in my garden so much.  I had only been going out in the evenings a couple times a weekup until the beginning of summer last year, but then did almost no gardening at all.  One look at my garden tells that story.  My doctor retests my D levels every three months and the January results were VitD 25-OH Total-10; D3-10; and D2-<4.  I'm taking an extra Benicar each day and even some sublingual when needed, but it doesn't seem to help much.  My IP is still quite strong. 
 
Jan

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Interesting discussion on light sensitivity. I think the neurological symptom increase for me makes being in the sun completely out of the question at this stage... but later? It would be nice to join my family on outings when I feel better.

My husband and I signed up with the home testing via the D-action site (grassrootshealth.net) not because we agreed with their view of how things work, but simply based on the cost & ease of in-home testing.
  • In June 2007 I paid over $230 out of pocket to Quest labs for my first 25-D test.
  • I paid an untold amount in emotional grief getting the 25-D tests ordered by my PCP at the HMO. It was like running a gauntlet, especially as the numbers got lower and lower.
  • I paid $30 at the D-action site to get my latest test. So far, they haven't sent anyone to my door to force vitamin D pills down me, but maybe they will later...
However, before I could log in to see my test results from their site, I had a good look at what kind of information they are pushing... sadly.

I think it is good that people on the MP are participating in their study so their results are more representative (by including already chronically ill people).

Today the front page had a chart showing the results so far... over 1,000 participants enrolled.

As of 3/5/09, the numbers are:
(ng/mL)
 < 10     1%
10-20     6%
20-30   19%
30-40   25%
40-50   21%
50-60   10%
60-70     7%
70-80     4%
80-90     2%
 > 90     4%
(I was happy to find I am a member of the 1% group at the low end. :cool:)
 

How different the interpretation of these numbers can be...
...depending on your viewpoint.

They look so hopeful. Their plan is so simple. And so simply wrong too.

They are pushing D supplementation to prevent breast and colon cancer.
They are asking everyone to supplement D until their 25-D is in the 40-60ng/mL range.

The results of high levels of D will appear in people years after the study is over...
 
((( sigh )))


p.s., On the topic of sun exposure's relation to 25-D levels... my husband is not on the MP but stopped supplementing with D at the same I did. He has Th1 symptoms. We eat mostly the same foods (but he occasionally eats canned tuna) & he is out in full sun while fishing for 1-2 days each week (fully covered & good sunscreen). His recent 25-D test result was 14ng/mL, down from over 35ng/mL two years ago.

Russ
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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

 

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.



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