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Joyful
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Posted: Tue Jun 23rd, 2009 10:40 |
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Modric,
Members of the study site are encouraged to create a 'signature line' that includes the D metabolite test results.
They are not always easy to read, especially as the space is limited.
Carricol's signature line should answer your question:
MP|Sarcoid|no card or resp|18 Sep 07,25-D=34 ng/ml; 23 Oct,25-D=20 ng/ml,1,25D=38 pg/ml;6 Dec,25-D=13 ng/ml|minimize light & D|14 Nov Bcar start|17 Nov 07 Mino start|Non-MP Meds:Fluoxitine,Lithium,synthroid,5-HTP,Tyrosine,DLPA|NOIRs & cover-ups
Breaking this out...
MP| == on the Marshall Protocol
Sarcoid|no card or resp| == diagnosis and/or conditions
18 Sep 07,25-D=34 ng/ml; == first test result
23 Oct,25-D=20 ng/ml,1,25D=38 pg/ml; == test result ... year?
6 Dec,25-D=13 ng/ml|
minimize light & D| == lifestyle
14 Nov Bcar start| == start Benicar in 2007
17 Nov 07 Mino start| == start Phase 1
Non-MP Meds:Fluoxitine,Lithium,synthroid,5-HTP,Tyrosine,DLPA|
NOIRs & cover-ups == lifestyle
I am going to guess that the second test result is in 2008 and therefore Carricol does not appear to have a 1,25-D test result prior to starting the MP.
Now that the 'code' has been explained to you, most everyone's signature line should tell you a story. 
Edit: after further research, it appears that the second test result was before the MP (in 2007), but after starting Minocycline only (without the Benicar).
Last edited on Tue Jun 23rd, 2009 10:44 by Joyful
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modric
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Posted: Tue Jun 23rd, 2009 15:44 |
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Joyful wrote: Modric,
Members of the study site are encouraged to create a 'signature line' that includes the D metabolite test results.
They are not always easy to read, especially as the space is limited.
Carricol's signature line should answer your question:
MP|Sarcoid|no card or resp|18 Sep 07,25-D=34 ng/ml; 23 Oct,25-D=20 ng/ml,1,25D=38 pg/ml;6 Dec,25-D=13 ng/ml|minimize light & D|14 Nov Bcar start|17 Nov 07 Mino start|Non-MP Meds:Fluoxitine,Lithium,synthroid,5-HTP,Tyrosine,DLPA|NOIRs & cover-ups
23 Oct,25-D=20 ng/ml,1,25D=38 pg/ml; == test result ... year?
I have seen that and I asked for details....What is considered here (on this site) as normal vit 1-25-D level?
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Jon Paul Jones
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Posted: Tue Jun 23rd, 2009 21:00 |
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What is considered here (on this site) as normal vit 1-25-D level?
On the page about the d tests, it talks about that:
http://www.marshallprotocol.com/forum2/366.html
In the second post, "How to Interpret the Signifiance..." it says 29pg/ml is the mean and then it talks about standard deviations and statistical math. It references that Danish study I mentioned. That whole page says a lot about what's high and low.
The newer info is linked to here:
http://curemyth1.org/forum5/2131.html
There's a link to an online calculator where you enter your numbers and get the interpretation.
____________________
depression, allergies, Raynaud's, carpal tunnel, daily headaches, stopped up ears, tinnitus, prostatitis, hypertension, psoriasis 125D48/25D38(Nov08) 25D11(Apr09) 25D7(Dec09) Ph1Feb09 Ph2May09
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Joyful
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Posted: Tue Jun 23rd, 2009 22:26 |
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Modric,
People on this site don't have normal 1,25-D levels. That's why we are here.
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modric
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Posted: Wed Jun 24th, 2009 18:20 |
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Joyful wrote: Modric,
People on this site don't have normal 1,25-D levels. That's why we are here.
When someone has elevated 1-25-D (above 40, according to vit 25-D/1-25-D calculator) then, by logic, he should have symptoms (or lab results) of hypervitaminosis D even if his 25-D level is low.
So, the man from my signature has vit 25-D 10 ng/ml (normal 30-60) and he has low calcium, low phosporus, feeling cold and has blood pressure normal (130/75) for his age (47)..in short..no evidence of hypervitaminosis D. So it's unlikely he would have high 1-25D.
Last edited on Wed Jun 24th, 2009 18:22 by modric
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Joyful
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Posted: Thu Jun 25th, 2009 01:43 |
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Modric wrote:
So, the man from my signature has vit 25-D 10 ng/ml (normal 30-60) and he has low calcium, low phosporus, feeling cold and has blood pressure normal (130/75) for his age (47)..in short..no evidence of hypervitaminosis D. So it's unlikely he would have high 1-25D.
Ah, I see a bit more where you are going...
The FAQs offer this insight based on years of experience with these types of patients (and the variability of lab results):
If blood tests do not show classic results or do not strongly suggest Th1 inflammation, this does not necessarily rule out D-mediated inflammatory disease. If the clinical presentation warrants, starting the Marshall Protocol could be a good diagnostic tool used as a therapeutic probe. If the expected response occurs, a presumptive diagnosis can be made. In other words, if Benicar causes the expected the neurological-type adjustment symptoms and minocycline provokes a Herxheimer reaction, this is proof positive of occult microbes and that the Marshall Protocol is the appropriate treatment.
See Therapeutic probe.
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modric
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Posted: Fri Jun 26th, 2009 12:29 |
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Joyful wrote: Modric,
People on this site don't have normal 1,25-D levels. That's why we are here.
The man, from lab results and symptoms, has hypovitaminosis D, I mean low vit 1-25-D (even if only vit 25-D was tested). He is taking vit D supplements right now.
He, if at all, has only slight inflammation, perhaps in nervous tissue (CSF: high-normal proteins and 1 oligoclonal band; blood: 13% monocytes (norm:1-12).
One thought was to try a mini-probe with Benicar - as VDR agonist it should have synergistic effect with vit D...
Last edited on Fri Jun 26th, 2009 12:29 by modric
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Joyful
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Posted: Sat Jun 27th, 2009 07:46 |
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It is not possible to know the body's reserves of 1,25-D using a serum test of the 25-D. This is in part because of the feedback mechanisms that lower 25-D if the 1,25-D levels are too high.
The phase one guidelines are provided for use in a therapeutic probe. It is very important that the light avoidance measures are in place before starting. If there is subclinical disease, the photosensitivity can be unexpectedly disabling.
Some related articles & presentations:
Evidence that 1,25-Dihydroxyvitamin D3 Inhibits the Hepatic Production of 25-Hydroxyvitamin D in Man
Vitamin D metabolism in chronic disease
Clinical observations
Resources for physicians
Protocol guidelines.pdf
Photosensitivity
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modric
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Posted: Thu Jul 2nd, 2009 12:38 |
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| Anyone tried low vit D diet as the first and only (at the time) "therapeutic probe"?
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Cynthia Schnitz
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Posted: Thu Jul 2nd, 2009 17:11 |
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| I went on D/light avoidance for about 4 months before starting the MP. About 2 months into the avoidance, I got pretty extreme lethargy which lasted until the 6th month of MP, and is now, at 8 months, pretty well gone. This worked quite well with the need to sit at my computer reading up on the MP, and there really is that much material out there on the MP. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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modric
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Posted: Thu Jul 2nd, 2009 17:25 |
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| Cynthia, if you don't mind, what were your vit 25-D and 1,25-D levels before vit D avoidancea and, if you checked them, after that?
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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patrickburke
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Posted: Thu Jul 2nd, 2009 18:27 |
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Hi Modric,
I tried a low vitamin D diet prior to the MP and it hit me like an express train. My diet prior to that was high in D.
As a sarcie I didn't need to have D tests, it was all over for me, a life of ever increasing misery was my destiny.
But that was a long time ago now and things have changed .
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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modric
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Posted: Thu Jul 2nd, 2009 18:35 |
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| OK, I'm trying to figure out what is effect of low vit D diet in a healthy person and in sarcoidosis or other Th1 disease.
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Cynthia Schnitz
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Posted: Thu Jul 2nd, 2009 19:41 |
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| My Ds 2 1/2 months pre-Mp were 43 and 47, 43 ng/ml for 25D and 47 pg/ml for 1,25D. It may also interest you that about 2 months into the avoidance, my toenail fungus started to go away, tho it took months for the discolored nail to grow out. My immune system went into action on just D avoidance. Cynthia
____________________
Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Jon Paul Jones
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Posted: Thu Jul 2nd, 2009 20:03 |
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I quit D three months before starting benicar. My toenail fungus and prostate improved. My mood problems, muscle and joint pain, psoriasis, and Raynaud's got worse. These changes were not as dramatic however as the herxes that came when I started minocycline.
OK, I'm trying to figure out what is effect of low vit D diet in a healthy person and in sarcoidosis or other Th1 disease.
A healthy person (someone without TH1) does not need to supplement their D because the body can make all the D it needs. So the effect of low D in healthy person would presumably be nothing. Consumed D gets turned into 25d in the body which suppresses the immune system. This would temporarily cause someone with TH1 to feel better because their immune system would not be killing any CWD bacteria and would not be doing the auto-immune attacks on the person's body. But, when 25d is elevated, the CWD bacteria are able to proliferate which leads to a worse case of TH1 illness in the coming years. Lowered 25d in a person with TH1 allows the immune system to wake up a little which increases TH1 symptoms. All this is according to Dr. Marshall and is documented on the various Marshall Protocol sites. Mainstream medicine advocates supplementation of vitamin D because it makes people feel better and appears to prevent auto-immune and inflamation problems in the short term. But they do not yet recognize TH1 illness and do not recognize that this allows the CWD bacteria to get an even deeper foothold.
Last edited on Thu Jul 2nd, 2009 20:06 by Jon Paul Jones
____________________
depression, allergies, Raynaud's, carpal tunnel, daily headaches, stopped up ears, tinnitus, prostatitis, hypertension, psoriasis 125D48/25D38(Nov08) 25D11(Apr09) 25D7(Dec09) Ph1Feb09 Ph2May09
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modric
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Posted: Fri Jul 3rd, 2009 10:18 |
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Cynthia Schnitz wrote: My Ds 2 1/2 months pre-Mp were 43 and 47, 43 ng/ml for 25D and 47 pg/ml for 1,25D. It may also interest you that about 2 months into the avoidance, my toenail fungus started to go away, tho it took months for the discolored nail to grow out. My immune system went into action on just D avoidance. Cynthia
So, after 1 1/2 of vitD avoidance your vitD levels were still 43 and 47. I think I can safely assume that letargy started 14 days later was not due to low vit 25 or 1,25-D. Since, as it appears, you are on low vit D diet for 12 months now, do you have any later vit 25 and 1,25-D record? What hapened with yout Ca and P in all this time? Also, did you have any evidence of inflammation (CRP, RF, leukocytes..) in the blood during all this time?
Why I bother with all this? The man, Im talking about has vit 25-D 10 ng/ml and is currently (again) getting vit D supplements. Both his Ca and P are low but not always. I'm simply scared if he goes off of vit D, he will go into serious hypovitaminosis D, hypocalcemia, and hypophosphatemia. He has CRP and leukocytes normal, so, no of his lab results speak for Th1 disease. He has low testosterone and I'm just trying to find out if it is this or something other (beside Th1) what causes his symptoms and low vit D levels.
Jon Paul Jones:
My toenail fungus and prostate improved. My mood problems, muscle and joint pain, psoriasis, and Raynaud's got worse. These changes were not as dramatic however as the herxes that came when I started minocycline.
I guess you've continued with Benicar - what was effect? What exactly happened after Minocyclin?
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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patrickburke
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Posted: Fri Jul 3rd, 2009 15:00 |
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modric wrote: OK, I'm trying to figure out what is effect of low vit D diet in a healthy person and in sarcoidosis or other Th1 disease.
Modric,
The human body can produce all of its "hormone" D from cholesterol, that fact is well known. Therefore no "vitamin" (a misnomer per se) D is required in the diet at all. All the "vitamin" does is clog the relevant nuclear receptor, the VDR, and stop it producing a lot of the bodies natural defences against infection. The high levels of "hormone" D found in disease also interfere with other nuclear receptors and cause the symptoms of hypervitaminosis D.
There is a lot of hype going around about D and disease. Sick people get tested for "vitamin" D and it comes out low. Healthy people get tested for "vitamin" D and it comes out "normal". Therefore low "vitamin" D causes disease? Ur no it doesn't. Low "vitamin" D in disease is caused by the high levels of "hormone" D causing the body to lower (down regulate) it's levels of "vitamin" D in an attempt to bring the "hormone" level back down to normal.
Years ago I cut out vitamin D and restricted my sunlight exposure for 6 months, my sarc symptoms went away and much to my doctors surprise my chest xrays returned to normal. Then I started the MP and resolved many other issues.
Pat.
____________________
Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Cynthia Schnitz
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Posted: Fri Jul 3rd, 2009 21:11 |
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Yes, I have regular 25D tests about every 3 months:
43 <2 months> 28.6 <2.7 months> 26.2 <2.5 months> 10.1
The day before the third test, I was running around a good part of the day with sun reflecting off the road, and could feel the heat from the reflected light on my face by the end of day.
The gentleman you mention probably has hypervitaminosis D, not hypo. I'm sure the 1,25D test is the true measure. Most TH1 people have high 1,25D, even tho they may have low 25D. I believe that testing 1,25D is the only way to truly determine hypo or hyper. You did not fill in your location in your profile (choose 'My Account' upper right, and 'Profile' tab), so I can't comment on getting the 1,25D test. But here in the US, not all labs do it right, so I had mine sent frozen to Quest Nichols in San Juan Capistrano, CA.
I don't think you can estimate the time my lethargy took effect to within days, as I didn't recognize it for what it was, and didn't record the start day or week. Could be off almost a month, but I seem to recall it was about half way thru. I found the MP and started following it because of a problem with calcium. I could not take any Ca supplements or high calcium foods for several years, and after 13 years, only 1 cup of dairy/day marginally, or I would wake in the night with the short lived sensation of electricity running thru my upper torso. Every doctor I discussed it with was happy to test my blood calcium and some hormones, then shrug his/her shoulders as nothing was amiss, and probably just thought I was a hypochondriac. I think this is the 'out' for doctors to not have to think of them selves as having failed at their jobs. So, not knowing what the end game was going to be, I went for the MP, as so many do, out of a sense of desperation. Not that I didn't have other problems as well. So, no point in testing Calcium, and never had a problem with potassium. I now can, and make it a point to, have 3-4 cups of dairy a day. Occasionally I get a very reduced version of the old problem, but it may be IP, or some where around 3-4 cups is my current limit.
I'm going to guess that most TH1 people have hormonal problems. I certainly did. And I would guess that is one of the first symptoms that TH1 people get. All of my labs have always been normal (not counting estrogen and progesterone, which I supplemented), but here I am with early diverticulosis, an MRI of my back showing degenerative disc disease, early macular degeneration, and this Calcium quirky thing. Yep, all labs normal, and my family doctor happy to tell me I'm in great shape, except for my psychological problems (not).
What happens to people on the MP is such a mixed bag, you just can't project. Jon's Raynauds got worse, but my Raynauds like symptoms went away completely for the winter. I started MP late October, but I had a flurry of finger and toe ulcers at the end of winter/early spring for about 3 weeks, which never progressed thru the full cycle of opening up into the bleeding stage. I am quite sure they were IP as they were not related to getting chilled in body or limb. When things seem to be aggravated by the MP, I think it is part of the healing process. I had problems in my hip joints that I didn't actually recognize as I thought it had something to do with my back problems, until the MP got the nerves in my hip joints working again, and of course the hip joints started to hurt a bit now and then. Nothing that was too bothersome, but a real eye opener. I used to have a hip joint ball pop out of the socket, and then it bothered me until I performed a little exercise I was shown to push it back in. Now I realize the ball popped out because the swelling/inflammation got so bad there wasn't room for the ball any more.
Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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modric
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Posted: Sat Jul 4th, 2009 10:32 |
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patrickburke wrote: Years ago I cut out vitamin D and restricted my sunlight exposure for 6 months, my sarc symptoms went away and much to my doctors surprise my chest xrays returned to normal.
Can you by any chance describe exact chest X-ray abnormalities you've had: how many granulomas, how big, where were they located (centrally, on the bottom..), were they calcified and were they said to be in the lung tissue or in the lymph nodes? I'm collecting "real life" symptoms of sarcoidosis. I've read your story, btw.
Cynthia Schnitz wrote:
Yep, all labs normal
OK, this is what I wanted to hear. You've never had any evidence of inflammation in the blood ot just recently? Like that man - he is from US and I've already found list of labs in his state - no inflammation.
Last edited on Sat Jul 4th, 2009 10:47 by modric
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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inuk2600
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Posted: Sat Jul 4th, 2009 14:21 |
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Carricol wrote: Joyful said,
I have heard that the defense department has determined that the Gulf War Syndrome has affected 25% of all veterans of the Gulf War and that the common factors were a suppressed immune function from extreme stress combined with multiple vacinations given concurrently. Does that tell you anything?
Isn't it strange thatWWII vets did not suffer from Gulf War syndrome or any similar illness. I suspect that TH1 illness was not very prevalant back then. My theory is that the syndrome results from stress applied to individuals who already suffer from Th1 illness. In many cases Th1 illness may not have progressed to the point where a diagnosible illness has occurred. Most individuals are young. However, application of the stress to those with the inflamation precipitates the syndrome.
Back in those days (or earlier?) there was a post war syndrome was called "soldier's heart" or Da Costa's syndrome. It looks to me like more of the same...
I'm sure a lot of these young men were swept under the rug, and they were much less likely to self-report the neuro/psych symptoms associated with their illness. Thus the emphasis on the physical (heart). A lot of them probably just got shoved off with the "nervous breakdown" label too.
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CFS symptoms | 25D9(Mar09) | 25D14(Jun09) | Ph1Apr09 | Ph2Aug09
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