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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Sep 1st, 2006 19:23 |
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I have just completed my slides for the AAEM conference in October, and I want to thank the ARF team, especially Joyce and Belinda, for helping me flesh out the current knowledge about Rickets.
I need to talk with any of you who have previously been treated for Rickets. So far we know that Wrotek and Freddie suffered from the disease (when youngsters).
This webpage at the US Dept of Agriculture says Rickets "is not due to vitamin D deficiency but is caused by not having enough calcium in the diet," and that just about sums it all up.
Here is a copy of the text from the slide in my presentation about Rickets:
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Rickets not caused by Vitamin D ‘deficiency’
Clinical studies are now showing rickets is corrected
by Calcium and Phosphorous (ion) replacement, and
not caused by a supposed ‘deficiency’ in Vitamin D
intake, but by an inability to metabolize calcium.
PMID:15531695,12915633,15972816,9853545,11335766
(See also John Snow, circa 1857, PMID:12777413)
VDR-null mice have provided the in-vitro-confirmation
that rickets can be remedied by extra calcium and
phosphorous, totally in the absence of Vitamin D.
PMID: 16831920, 15976027
Review also: VDR is necessary for ‘non-genomic’
actions of Vitamin D. PMID: 16927375, 14665637
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There is a more rare 'Vitamin-D-resistant' form of the disease, which is caused by mutations in the CYP27b1 enzyme which converts 25-D to 1,25-D, or by mutations in the VDR. It needs to be treated with life-long massive doses of Vitamin D, or with physiologic doses of the analogs or metabolites (usually 1,25-D). There is no point in supplementing the food chain in an attempt to address this form of the disease. But now we know that it is apparently of no use supplementing with Vitamin D to try and prevent nutritional Rickets, either. Calcium and Phospohorus are much less insidious supplements
So there we have it. The reason given for supplementation of the food chain with Vitamin D (Rickets) has been debunked. How long will it take TPTB to react?
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Alison
Member
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Posted: Fri Sep 1st, 2006 19:35 |
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Dr. M,
Just a quick question. In Vit D Resistant Rickets, 1,25-D is elevated, correct? If so, how do you differentiate between VDRR and TH1 disease? With PTH, phosphorus, and/or calcium? Or will it manifest early on in childhood? Sorry if the answer seems simple, but it's not readily apparent to me.
Thanks,
Alison
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PRE-MP; SX: fatigue, mem loss, arrhyth, anxiety, irritability; No DX; D-Tests: Feb06 [25D=14, 125D=29], Aug06 [25D=26, 125D=72], Feb07 [25D=9, 125D=38], Sep07 [25D=20, 125D=41], Jul07 [25D=20, 125D=54]; Every day I learn that I have a lot more to learn.
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Sep 1st, 2006 19:42 |
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Alison,
If the mutations are in VDR then 1,25-D might well be overexpressed (elevated). But if the mutation is in the CYP27b1 enzyme, then 1,25-D will be very low indeed, as that enzyme is needed to convert 7-dehydrocholesterol through to all the D metabolites.
Treating VDRR must be a nightmare, as the high doses of 1,25-D given for a lifetime must certainly shorten that lifetime. We are still trying to find out more about the prognosis of the VDRR patients (how long they live). VDRR is a very rare disease.
We would differentiate between a person on VDRR therapy and a person with Th1 disease by noting that their D-metabolite test values do not make sense (ie, by looking at all the metabolites, diet, etc, the diagnostic picture just wouldn't add up).
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wrotek
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Posted: Fri Sep 1st, 2006 20:50 |
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| I was born in 1983 and became sick soon after that with progressive rickets. My skull was so soft that I could form it`s shape easily by laying on the one side of my head too long. I have received two doses of Vitamin D3 in injections( the drug was called vigantol) and that is all my mother remembers. Last edited on Fri Sep 1st, 2006 21:10 by wrotek
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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jrfoutin
Research Team
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Posted: Fri Sep 1st, 2006 22:06 |
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Chemical and Engineering news had a low key overview article that had this quote:
In 1927, Merck and Bayer teamed up to launch the first synthetic vitamin--a vitamin D product called Vigantol.
Another link identifies it as synonymous with Ergocalciferol. There seems to be a question as to whether it is D2 and D3 (some links show one or the other).
Also calcium-vigantol to treat backache (listed in Pubmed pregnancy backache treatment, there's a clue?)
Many of the references are German. European product.
.......................
Genuine vitamin D-resistant rickets and its treatment with high doses of Vigantol
Bourgeois M, Bierich JR. [Article in German] PMID: 5993447 [PubMed - indexed for MEDLINE]
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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jillian
Member in Phase 2
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Posted: Fri Sep 1st, 2006 22:37 |
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How do we get this knowledge to TPTB? or newspapers, or ?????
Maybe we should sic a moody, irritable modified phase 2 MPer on 'em (like me). Then again, maybe not, don't wanna alienate 'em do we....
Jillian
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PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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jrfoutin
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Posted: Sat Sep 2nd, 2006 03:08 |
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I believe Sherry has been working NPR to help get the D story through their scientific review. Others are doing what they can.
I'm finding few new ears and media outlets are ready to believe D is harmful, even if study evidence from a variety of researchers is presented. There are a lot of folks in love with supplements so those currently pushing D in the marketplace have an eager audience willing to believe. Vitamins/nutritional supplements are a big business industry, too.
Here's an insight from the Dietary Supplement Heath and Education Act of 1994, Sec. 2. Findings:
...(9) national surveys have revealed that almost 50 percent of the 260,000,000 Americans regularly consume dietary supplements of vitamins, minerals, or herbs as a means of improving their nutrition;...
...(12)(A) the nutritional supplement industry is an integral part of the economy of the United States; (B) the industry consistently projects a positive trade balance; and (C) the estimated 600 dietary supplement manufacturers in the United States produce approximately 4,000 products, with total annual sales of such products alone reaching at least $4,000,000,000;...
And that is just the US supplement industry (not food additives) mid 90's legislation. There were other insights in the Findings section, but that is enough of an eye opener for now.
This is a study site. That is the primary purpose for us to be here and to post. That said, helping the value of the science to be realized more broadly and sooner for the sake of humanity is up to the individual MPer (many are struggling just to get Drs, medications and to progress on the protocol). In time, we might at least warn those we know, especially those who saw us sick and watched as we got well.
But we can tell everyone we know now to avoid D like the plague it is.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Freddie Ash
Member in Phase 3
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Posted: Sat Sep 2nd, 2006 13:20 |
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HI ALL
This is Fred in WV. This thread about the RICKETS IS NOT CURED BY VITAMIN D is not new to me. Some I am sure has seen my post in another thread about my story and rickets. I just wanted to say that Belinda sent me articles about vitamin D over ride was the cause of rickets. This was a year or so ago. So I knew it was not low vitamin D that caused my rickets.
Remember, we are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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scooker48
Member in Phase 3
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Posted: Sat Sep 2nd, 2006 15:03 |
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I have received only silence from all my communications to NPR.
However, I have a nibble. A tny nibble from an NPR stringer--some who occasionally writes for NPR. She responded to my initial email, which was designed only to get her to reply, with the following sentence: "sounds intriguing". I have not yet replied, trying to think of the right strategy. I believe the goal is to get her to call or email Dr. Marshall. I apprecate others thoughts on how to proceed...
Janet, 1994 was years ago. We don't have to take on every supplment maker and every kind of supplement. We are only taking on Vitamin D. And we have a multi-study research and a live human protocol with hundreds of people who will attest: taking Vitamin D out of the diet is profound. Our own bodies heal themselves once the hormones reblanace.
Knowledge is power and yes, people will respond if you can get the message out to them.
I went to Whole Foods last night and pointedly told the stock person in the Vitamin seection that Vitamin D is very dangerous to your health, it is a hormone and upsets our immune system, and then bacteria and disease come into our bodies. It does NOT cure Rickets and there is solid science behind this. You should of seen her face.
Sherry
Last edited on Sat Sep 2nd, 2006 16:05 by scooker48
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 11/7/09 D25 at 6, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal. ACE still high at 113 on 11/7/09.
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Sep 3rd, 2006 03:27 |
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Sherry..........this is revealing.
That a lower level reporter is more interested in finding the next big story is understandable. (Woodward and Bernstein, for example). We have seen the same with doctors.......the specialists think they already know everything.
We are not only trying to overcome ignorance but arrogance as well. Add to that deeply held beliefs that Vit D is good for us. Add to that all the news about how we need MORE of it.
Maybe only a celeb will be listened to. I still wonder if Laura Hillenbrand is doing the MP. I wrote to her last year in care of her publishing company. .................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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GeorgeinRollaMO
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Posted: Sun Sep 3rd, 2006 06:21 |
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Why not send a copy of that USDA article to everyone in each MPer's email address book!?!?!?!
I have sent it out to over 200 people.
Who knows who the message will find! 
Dark Vader...aka, George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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jrfoutin
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Posted: Sun Sep 3rd, 2006 16:57 |
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Sherry,
No worries. The goal of the previoius post was to show the breadth of the industry, not to suggest every supplement maker be taken on. The point is more to the fact that a huge amount of public trust is placed in supplements, and taking on a supplement will not be easy. The quote was from US congressional legislation regarding the supplement industry. Obviously, D only accounts for a segment of that. Sharon's comment says it another way:
Add to that deeply held beliefs that Vit D is good for us. Add to that all the news about how we need MORE of it.
George, it doesn't surprise me you have that kind of reach. I appreciate your good example!
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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scooker48
Member in Phase 3
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Posted: Sun Sep 3rd, 2006 18:03 |
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Janet,
To be sure, this isn't going to be easy. It will be a battle hard fought. However, communication is the key.
I sometimes start my spiel with the following: "Just like the knee bone is connected to the thigh bone, the hormone system is connected to the immune system. I have re-balanced my hormone system by removing Hormone D, mistakenly called Vitamin D, and my immune system is fighting the pathogenic bacteria."
I love public speaking. When I was 21, through some miracle of the universe, I had a summer job conducting tours of the Oregon Caves National Monument. (Long story). For me, the best way to make a point is in the most simple terms possible. Offensive to geologists, no doubt, but I can turn millions of years of geologic history into a few sentences. If they ask questions, then we go into the details. Just my opinion.
I am thinking the best way to proceed with the NPR stringer is something like the following:
"The details are as intricate and detailed as the Watergate story. On the chance you have the spirit of Woodward or Bernstein, I refer you to Deep Throat:The Autoimmunity Research Center, quote address and telephone number (?and email) attention Trevor Marshall."
Feedback is appreciated. I plan to send this about 2:00 p.m. on Tuesday. Timing is everything: she's probably eaten her lunch and is relaxed. LOL.
Sherry
Last edited on Sun Sep 3rd, 2006 18:44 by scooker48
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 11/7/09 D25 at 6, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal. ACE still high at 113 on 11/7/09.
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Sep 4th, 2006 04:43 |
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Great, Sherry! You are really good at this. .......Sharon
Moderators: Can we get this back into the NPR thread instead of the rickets thread?
Last edited on Mon Sep 4th, 2006 04:44 by ShrnHml
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Mon Sep 4th, 2006 04:53 |
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Sharon
Partial threads, ie single posts from a thread cannot be moved by the Moderator.
Therefore: If a Member posts a reply onto a thread and it is replied there, that is where it stays.
-Any Member posting mistakenly in a thread may repost quickly in the correct thread
-and can edit their mistake and or ask the Moderator to do so..
Thank you, Barb ...
The topic is:
Rickets is not cured by Vitamin D
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie
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Posted: Mon Sep 4th, 2006 18:17 |
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I need to talk with any of you who have previously been treated for Rickets. So far we know that Wrotek and Freddie suffered from the disease (when youngsters).
Trevor,
My Dad had rickets as an infant. I would be happy to get any info he might know about this from him. Mom says that's the reason his legs are bowed and his skull is quite flat in back from laying on his back as an infant while his bones were so soft, or so I'm told.
EDIT: I wonder how Dad's "ricket incidence" might have affected me in developing D dysregulation as well... any ideas? 
TM EDIT: I think that's the $64,000 question, Reenie
Last edited on Mon Sep 4th, 2006 20:21 by Dr Trevor Marshall
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Freddie Ash
Member in Phase 3
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Posted: Tue Sep 5th, 2006 01:03 |
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HI REENIE & ALL
This is Fred in WV. Reenie or if any one wants to know anything about me and the rickets please let me know.
Remember, We are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Freddie Ash
Member in Phase 3
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Posted: Tue Sep 5th, 2006 13:59 |
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HI ALL
This is Fred in WV. I want to add something else to my childhood story about me. When I was in grade school I also had very bad baby teeth. I had to have all the uppers pulled one week and all the lower teeth pulled the next week.
Remember, we are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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tickbite
Guests visiting Phase 1/2/3
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Posted: Wed Sep 6th, 2006 05:03 |
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| Thanks Freddie..... You know how to put some life into this website I don't know whether to laugh or to cry
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"Lyme","CFS", Meningitis
Phase3 8-2-07, MP on hold 11/2007
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Freddie Ash
Member in Phase 3
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Posted: Wed Sep 6th, 2006 17:30 |
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HI TICKBITE
This is Fred in WV. I have always had a smile on my face. I take that after my dad. Life has given me some pretty close calls from the sarc. I have always tried to fine something funny in a lot of the problems I come into contact with. I have had at least 4 close call with the sarc. Once when I had to have a kidney stone cut out(Feb 1985), once when I had a heartattack(Mar 10 2001) once with the first by(Mar 20, 2001) and once with second by(Nov 25, 2003). OH I just thought of another one, when I had my first pacemaker put in(Nov 8, 1995). That is really 5 not 4.
Sometimes it was hard for me to figure out if I was to cry or laugh.
Remember, we are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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