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Now you can test your 25-D at home
 Moderated by: Prof Trevor Marshall Page:  First Page Previous Page  1  2   
 

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Deedee
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Joined: Sat Dec 27th, 2008
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 Posted: Tue Mar 31st, 2009 05:35

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Thanks for the clarification.  Have a great day.



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06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
eClaire
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 Posted: Tue Mar 31st, 2009 07:39

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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



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Dec 2006, Olmesartan break Feb - April 2007, ME/Fibro/PTSD/MCS/Hypermobility (since childhood; disabled 2003); 25D summer 2012 <4 (meaning unable to detect)
kenc
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 Posted: Tue Mar 31st, 2009 11:24

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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 12:43 by kenc



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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
Kas
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 Posted: Wed Apr 1st, 2009 05:56

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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 05:57 by Kas



____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver, later in kidneys. Anemia. Started MP 2004. Non- stop now since 2007. No abx since March 2008.Olmetec only. Natural progesterone cream one daily x 3 weeks a month; cal / mag supplement. B12 when levels
JanEE
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 Posted: Thu Apr 2nd, 2009 23:15

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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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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
Joyful
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 Posted: Tue Apr 28th, 2009 15:58

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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.



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Russ
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 Posted: Mon Sep 7th, 2009 01:20

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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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y
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 Posted: Mon Jan 10th, 2011 20:22

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My experience with ZRT Vitamin D Testing.
Policies/Websites could change, but this is how it was recently for me.

When you go to zrtlab.com and choose "ORDER A TEST" from the top menu, under Healthcare Consumers, Option 2, there is a link: "Click here to order retail testing services". Follow this and you will see a header for California State residents. You'll see 2 websites mentioned - one with canaryclub in its URL and the other with virginiahopkins in its URL.  Even if you don't live in California, there are advantages to ordering from these sites.


Through ZRT the D test is $75.  Shipping is $5. If you go through ZRT, consider before taking the UPS Ground default. For the same $5 you can get Priority Mail.


If you order through Canary Club (membership is free), the test is $65, with ground shipping for $5. You save $10 but don't get Priority Mail.

Better than the $10 savings, though, once your first test has been processed, you can get a username/password to be able to log on and download or view your results as soon as they are ready. You don't have to wait for them to be mailed or for the doctor to review. When you ship your test back to ZRT you'll have the UPS tracking number. Watch for it (online) to arrive at ZRT - the UPS truck makes a trip there at 8:30 AM currently. Once it arrives, wait for 3 business days. On the 4th business-afternoon, call ZRT, tell them you are a Canary Club member and ask for a username. If your test isn't ready yet, she'll probably tell you to call back the next day. For some reason, they didn't want to give me a username until the first test had been processed. You only go through this for your first test. Thereafter your account will be there for the rest of your tests.


One thing - during the process of ordering through the Canary Club website, you will be transferred to the ZRT website. Don't worry - when you get there it knows you came from Canary Club and gives you the $65 price and not the $75 price.


If you order through Virginia Hopkins, the test is $68, with free shipping. you save $12, but you are not entitled to have online access to your results. However, if your first test was through Canary Club, then your following tests will appear online, even if ordered through Virginia Hopkins.  shhhhh... I don't want them to plug this hole. At the time I was ordering I used VH for blood cortisol because Canary Club didn't have that test. Another advantage to using her is that you have a 2nd source to ask questions. She was very helpful.


There is an art to using the finger pricker they send you and I am not talented at it. I either did it too softly to get enough blood for more than 1 dot, or so hard my finger hurt for a week. If there is a diabetic in the house you could use the tool they have for pricking their finger that is calibrated. There are 12 dots and you're not supposed to overlap blood within a single dot, yet you are supposed to fill each dot. At the largest size of drop on my finger it didn't fill the circle. If I tried to get a bigger drop, it lost its shape and ran along my finger. I was told, thankfully, that they only need 3 good circles to do the test. I still filled out all 12, but didn't worry as much that some circles weren't filled. If they can't do the test from the sample you send them, they will send you another card at no cost to redo it. You just, of course, lose time.


I was told they want finger blood because it is arterial.


It is hit or miss whether you can get ZRT to only include your latest test on a report. Their program is set up so it automatically includes your history. They can put a note in your file that you don't want the history, but they cannot change any permanent setting. So far, the person printing the report doesn't notice the note. I'm not sure how this falls in with HIPAA. They are potentially sending your previous results to a doctor that did not order the test and without your permission.


Comparison with Quest:
Specimens were collected within an hour of each other. I filled in the ZRT blood spots and then went to Quest and had blood drawn.


Quest:
Vitamin D, 25-Hydroxy, LC/MS/MS, Reference Range 30-100 ng/mL
Vitamin D, 25-OH D3     40 ng/mL
Vitamin D, 25-OH D2     <4 ng/mL
Vitamin D, 25-OH Total  40


ZRT
Vitamin D, Reference Range 32-100 ng/mL
Vitamin D, 25-OH D3     45 ng/mL
Vitamin D, 25-OH D2     <4 ng/mL
Vitamin D, 25-OH Total  45


 


 




____________________
MP Benicar only Sep'10; lyme '06, cfs '89, hashimoto's '03; Dupuytren's Contracture '13; fatigue/weakness, brain hijinks, joint/muscle pain; 125D 77 (8/10), 25D 5.7 (02/15)
Prof Trevor Marshall
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 Posted: Mon Jan 10th, 2011 21:02

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Thanks for the very detailed update, y.

IMO, those two values for 25-D are close enough (40 vs 45), considering the convenience of the ZRT test. I am surprised that their privacy is not a little better, however.

..Trevor..
 
 

Rico
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 Posted: Tue Apr 9th, 2013 07:39

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Has anyone ordered Vitamin D home kits from BIONational Pharmaceuticals? It's cheaper than the ZRT kit, as is the shipping cost outside the U.S.



____________________
No diagnosis/some symptoms (more than I knew); wife with Sarc on MP; Olm 40mg q4-6h | 25D=22 (May 2014) | 25D=27 (Nov 2014)

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