great set of links.
I am going to start back on my regimen of extra D!! w/ calcium ...
I know I keep coming back to this but it's KNOWN to be involved in immune systems.. nerves, muscles, inflammation.. HELLO? Vit D deficiency can cause bone deformations??
Vit D deficiency prevents adequate absorption of Calcium...
I truly urge everyone on this web forum to have your vitamin D tests done...
Feel Free to commandeer my band wagon anytime Glad you liked the links.......It's pretty interesting that this disagreement about Vit. D. has been going on for the last 8 years or so. The first time I was put on D was by my cardiologist/pulmonologist 8 years ago. Combo of Vit. D., folic, magnesium for a cardiac issue. My RD suggested that I might consider increasing the D but I told him I was comfortable at the present dose and I get plenty of sunshine. I had a low D level several years ago and increased the dosage. My levels are normal now and I'm in clinical remission so I don't plan on changing any of my meds including D. The balance is too precarious. I guess the point is, this controversy has been going on for a long time and it's still not resolved to the complete satisfaction of everyone. But in this instance I'm going to err on the side of science and not the pharma co. I'm still alive, doing well, 8 years after starting Vit. D. Lindy Thanks Lindy! You're one of my inspirations on here.... [QUOTE=babs10] there is a tight2close association... we've discussed this off board, Pip.. leaky gut? remember that????? but if Lynn posts it.. it's vile and untrue? WTH?
??? First you start by saying "why can't we all get along?", then in the next breath you imply I don't want you to take vitamin D or be in remission?
All I said was I hadn't seen anything that convinced me vitamin D was preventative. It is possible it
disease while repressing symptoms so that taking it is in the long run harmful. I said I didn't know either way.
Pretending to be neutral when you're not is incredibly passive aggressive, you know. There is a lot of that on this board as well, so you're no better than those you chastise.Babs,
Welcome to the passive, aggressive club
I meant my post EXACTLY as it was worded....
I won't be attacked or have my words questioned and remain quiet. I am pretty fed up w/ the childish games on here... and I've remained quiet and complacent... but it's gotten me ... and I'm finished w/ being quiet... I don't attack.. but I will stand up for others who are.. when they've done nothing to warrant it...
Now, you can take VitD or not.. I could care less... ALL I said was, it seems to be a simple solution ... IF you have documentation that shows it feeds disease while suppressing discomfort.. perhaps you should share that with those of us who are interested.???
I'm not telling anyone to be quiet. Nor was I trying to convince anyone not to take vitamin D. All I said was it seems to me the evidence is inconclusive.
From my point of view it seemed like I was just asking some simple questions and the next thing I know I'm being attacked by you just because you didn't like the questions I was asking. From my point of view it's YOU trying to bully me into "shutting up". "I won't be attacked or have my words questioned and remain quiet" Is not taking everything you say, your opinions as automatically right, somehow "attacking you"? From my point of view it's YOU playing games. Guess what, I'm not going to shut up because you're a bully. It goes both ways you know.
(It's like Lynne's little tag line. At one point I decided not to post at AI anymore, but I read Lynne's tagline and I though,"yeah". Thanks, Lynne, for inspiring me to stay!) I won't be bullied by you, babs.
You don't like the dynamics on this site? Stop perpetuating them. Before you decided to go into attack mode, show me one thing I said to you that was the least bit aggressive?
And since you ask, here's some stuff from that other theory. I'm not saying I'm convinced by this either,I'm just saying I don't know. And for the record, that's all I've said on this thread.
http://www.youtube.com/watch?v=RpocxjKJxagI'm not repeating myself, Gimpy Re-read my post. do as you wish .. makes me no matter no mind.
My comments about how things are on these threads weren't necessarily directed AT you...
but you feel defensive?
Can't see your youtube post from work.. If I remember to ... I'll check it out later.
Yes, Babs, I have had all 4 of the D tests done. I'm low. I'm also not doing anything about it and am still heading for remission. Nobody is saying you can't do D. It's a steroid which is why I'm not using it because in my OPINION, it's only covering the disease process. I'm trying to make my body get to remission by taking back the nutrients robbed from the cells.
And frankly, I don't see how questioning where the financing is coming from is not a valid point in weighing the objectivity of the study. What do you expect the Vitamin D council, who's main purpose is to support the use of vitimin D and is a group of D manufacturer's, to say? Don't use D? Not going to happen. I never even knew there was a Tanning Lobby before I researched 'conflict of interest and D' but it makes sense to me they would align with the D Council. What we need is some other group, not affiliated with them, to agree with their findings. So, far, that hasn't happened.
As for leaky gut - yes, I think it's a strong correlation and yes, that's one of the reasons I'm not doing D.
Since when is asking a simple question supposed to be 'attacking'? How do we learn to heal when we don't have boths sides of a question?
My question is now this - what about this is upsetting you so much? Is it because you might possibly be chosing the wrong road for your recovery? This reaction is a personal one and not related to the research. Lynn posts this 'science' constantly and mostly I ignore it because I think its the wrong road for me. She's never going to agree with my road. Notice she and I don't go at it - it's the people that got upset about the questions that did.
So, let's make this personal. If you choose D and you heal, is that a problem? Why? If you choose D and you don't, is that a problem? Why? The only reason you would be upset in that last scenario is if you blamed yourself for not taking the 'no D' path.
And is this the same reason for the Anti-AP group? Think about it, we're not saying you 'have to' do Minocin. All we're saying is that its an option. So why do some people get their knickers in a twist about it? Something about AP scares them personally, not generally, but personally. And that tells me they're not listening to that little voice inside their head that says 'something about this rings true'.
All we're saying is make a decision and go for it.
I have not made a decision, I'm still on the fence because both sides make valid points. Nor do I get upset when Lynn posts this stuff. Mostly I ignore it because its tainted and doesn't lead me to making a decision.
Pip
Babs,
I do credit the Vitamin D for helping me get better and for ending the terrible muscular aches and weakness I had. After doing much research. I believe the combo of prednisone and extremely low Vitamin D levels ( RD said they were the lowest he had ever seen) caused my hip fracture. Two ortho's and my RD agree with that assessment.
Certain posters are going to criticize any research that I post about Vitamin D. That makes not a wit of difference to me......I know what I believe and why I believe it and in my opinion, the scientific evidence backs it up.
Edited because my phone keeps ringing.......
Lynn492008-10-21 08:19:45another study to be conducted:
http://www.jrheum.com/abstracts/abstracts05/76/11.html D-hormone [1,25(OH)2 D3] is an important immune system regulator that has been shown to inhibit development of autoimmune diseases including experimental inflammatory bowel disease (IBD), rheumatoid arthritis (RA), multiple sclerosis (MS), and type 1 diabetes.
J Rheumatol 2005 September;32 Suppl 76:11-20.
http://lup.sagepub.com/cgi/content/abstract/17/1/6 Patients with autoimmune diseases such as multiple sclerosis, rheumatoid arthritis and systemic lupus erythematosus show low 25-OH vitamin D serum levels.
(Sage Journals) Lupus, Vol. 17, No. 1, 6-10 (2008).
http://www.medscape.com/viewarticle/580514 Objectives: A role for vitamin D in the pathogenesis of autoimmune and inflammatory diseases is emerging. We undertook an audit of 25-hydroxyvitamin D (25OHD) investigation and treatment in rheumatology outpatients.
Methods: Serum 25OHD requests were matched to electronic medical records from rheumatology and metabolic bone clinics (April 2006-March 2007). Data were analysed separately for two groups, 'Documented osteoporosis/osteopaenia' (Group 1) and 'General rheumatology outpatients' (Group 2, sub-divided by diagnosis). Hypovitaminosis D was defined by 25OHD levels <50 nmol/l. Values were compared with healthy adults to calculate geometric
z-scores.
Results: A total of 263 patients were included (Group 1, n =122; Group 2, n = 141) with an overall median 25OHD of 44 nmol/l. The 25OHD level among general rheumatology patients (median 39 nmol/l, mean z score -1.2, was statistically significantly lower than among osteoporotic/osteopaenic patients (median 49 nmol/l, mean z score of -0.9, p < 0.05 for the difference). 25OHD was lower in inflammatory arthritis and chronic pain/fibromyalgiathan in other groups. Prescribing was recorded in 100 in Group 1 (of whom 95% were prescribed calcium/800 IU cholecalciferol) and 83 in Group 2 (91% calcium/800 IU). Only 31% of the patients with 25OHD <50 nmol/l would have been identified using general guidelines for screening patients at 'high risk' of hypovitaminosis D.
Conclusions: Improved guidelines for managing hypovitaminosis D in rheumatology patients are needed. We found a high prevalence of hypovitaminosis D among secondary care patients in rheumatology and widespread supplementation with 800 IU cholecalciferol. Substantially reduced levels of serum 25OHD were identified among patients with inflammatory arthritis and chronic pain.
I've read alot about Vit D. I can't find anything detrimental .. even if I google Bad Vit D.. it tells me about deficiency being bad.
So, it can ease our pain and inflammation.. it's a preventative to alot of cancers.. can curb cardiovascular disease....MS is an autoimmune disease, where the body’s immune system attacks and destroys its own cells that afflicts people with low vitamin D levels!!!
In order to enjoy optimal health, we should maintain a vitamin D blood level of ≥50–99 ng/ml --- where is your level????
I am, like Lynne, and LinB.. passionate about educating our members about Vit D deficiency. I know I feel loads better since I began a regimen including additional Vit D than what the FDA states we need..... and my Endo tests me each 6 month interval...my levels are returning to optimum....
It's
Pip.. I do not think I'm taking the wrong road for recovery... nor have I made any insinuance about your choices...
this is a ridiculous statement: So, let's make this personal. If you choose D and you heal, is that a problem? Why? If you choose D and you don't, is that a problem? Why? The only reason you would be upset in that last scenario is if you blamed yourself for not taking the 'no D' path
I feel strongly about this and though I don't need anyone's support or beliefs.. I want to be sure that those who should hear.. do..
as far as AP.... I've never said it isn't an option for anyone... you know that. But, I've said it's not my option. You can't have this disease as long as I have and feel you have "time" to work on a solution that requires time.
Regarding AP you said: All we're saying is make a decision and go for it. That's what I'm saying about Vit D. do it.
Babs -
My level is low, I don't convert D correctly as shown on ALL 4 D tests. Did you have all 4 D tests run? How is your conversion rate? Because if you can't even answer that question, you are not in a position to answer whether on not D can help or hurt you. Or others.
Glad you feel so strongly about the research. However some scientists are starting to question the recent research.
This guy comes out for D - am not sure where he is in the 'paid for' category. However, if you really read this study, he's saying 'yes, there's problems with D intoxication' and lists some of the studies that have been written about how this could be toxic for some. I'm sure you will read all of the studies in it, after you view the video when you get home, because you want to be informed. Links to the cites are provided at the bottom, I believe, or you can run a search on Pubmed for the authors. I mean, knowledge is power, right?
Here is something that was published at the Karolina Institute which Nikkilynn likes to post from all the time. This time she didn't.
Also, I take this back - Vieth, listed above, is highly suspect. He's bought and sold. MY OPINION.
And here is a commentary about a blog - Dr. Len’s Cancer Blog” - a website written by Dr. Len Lichtenfeld, Deputy Chief Medical Officer for the national office of the American Cancer Society - explaining why they are refusing to advocate raising the D levels in America when Canada recenly did.
Now get this - this was the top 2 sites for a Google search for ""vitamin D" conflict of interest raise government levels". Run it yourself and while I'm sure you will find pro-D stuff in there - you will definitely find more 'need more info' threads.
Pip
[QUOTE=babs10]
I feel strongly about this and though I don't need anyone's support or beliefs.. I want to be sure that those who should hear.. do..
[/QUOTE]
Hear what? That possibly they could get worse if the paid for research is proven to be wrong? That they can easily, and cheaply, get the 4 D tests themselves and make an relatively easy educated decision?
You did, right? You know your conversion ratio, right?
Pip
As a matter of fact, I do have my conversion ratio (I am at work and don't have access right now) ... when we were talking leaky gut.. I PULLED all my original tests... not only did I have tons done... but I had 24 hour urine collection to be sure that I was using the D to help me absorb calcium and phosphorus. I also had thyroid levels and all my hormones tested. I saw a very informed Endocrinologist who is following my progresses with a phone call every three months and 6 months visit and testing.....
so.. since you have malabsorption... what are you doing about that? what is the cause? You are looking into it further aren't you?
No, I'm not looking into it further right now. I've seen a lot of research on the car-jacking abilities of microbes in relation to the HPA axis hormones so what I've chosen to do is supplement the big 3 (potassium, magnesium and calcium) and hope for the best. I'm kind of questioning the need for calcium because of the nanobacteria's ability to utilize that to create a hard shell that makes them impervious to being killed. Since I have DDD starting in my back, and nanobacteria have been linked to calcium and DDD, I'm a bit hesitant to protect them in any way. But, again, the whole nanobacteria question is even more cutting edge than AP so I'm not yet comfortable saying 'no calcium'.
I intend to research more it but was given incredibly strong instructions by my new Geek Angel to NOT take in any more research until I arrange what I have to find it again. I couldn't find the links I just posted on my own hard drive so ran another search and resent it to myself with better tags. She sent me home on Sunday with step by step instructions on how to start this and a list of stuff for hubby to install or purchase. I'm gonna be in trouble for this as she knows what's here already. :-)
We know I think the cause is bacterial. My worry is that if I supplement D, yes, I'll feel better, but they get more of an upper hand or can possibly regroup.
My whole concern is cause or effect? Chicken or egg?
And this is going to take a TON of research. It doesn't help that the MP people don't answer questions about their research.
Hugs,
Pip
PS - if you get your ratios, I'll get mine and we'll compare. I have those in a medical file.
you betcha!
babs this one and her evil twin don't read other peoples post but just twist the statements and then cry that everyone else is attacking. there's no room for other views with these two, they just try to wear everyone down lol
[QUOTE=babs10]
[/QUOTE]
Well, I suppose I would think that because you wrote:
"and yes, Giimpy, I want remission... I hate being diseased w/ this.... and if a natural steriod can give it to me..... I'll take it.. be thankful and be done ...... why wouldn't YOU? many of you take prednisone that can harm you at high doses long term ... why not take a little extra D??? "
When things are prefaced with my name I always make that silly mistake of thinking they're directed at me.
And for the last time, where did anyone suggest you stop taking it? You're going on about something that never happened to try and justify your bullying behaviour.
mabus, people on AP take probiotics, and some of them also use nystatin and oil of oregano, so you can stop worrying about candida.Read above.. Pip and I can discuss this like adults without finger pointing..
I wasn't directing AT you.. but commenting on your post... BIG difference, dear.
I am far and not a bully. and you can't make it so by saying it. ... no matter how hard you try.
LinB and Lynne being in clinical remission w/ their meds and Vitamin D... is a good start for me...
and you can hang around til 2010 for the results of that study I posted about...
but I won't be... I'll be skiiing and snorkeling and swimming and hiking and biking in my remission so you take ap one day - kills friendly bacteria
probiotics to replenish damage and then take ap to kill off again
sounds like you are just going round in a circle eh
[QUOTE=Gimpy-a-gogo]
mabus, people on AP take probiotics, and some of them also use nystatin and oil of oregano, so you can stop worrying about candida.[/QUOTE]
And you also take 2 DMARDS in addition to minocylcine!!!!
[QUOTE=babs10]not me, Henrietta.. edit my name out of there
The question is...why don't we question more? If Lindy has a good experience, more power to her. It's the non-questioning that bothers me.
Pip
Edited to say Lindy - not saying you're not questioning, just questioning in general. KWIM?
Pip!2008-10-21 13:11:10Mabus, henrietta, and babs; classy.
Well, I have now read
all the links on this blog, and I must say it was very interesting, especially this passage which refers to one of the studies Lynne posted;
"In one letter, three scientists in Texas pointed out a number of issues, not the least of which being an Iowa study which suggested that when breast cancer was looked at there was indeed a fall in cancer numbers for the first five years when a vitamin D supplement was taken. But this balanced out at 10 years and there actually seemed to be more breast cancers among women taking vitamin D after 15 years."
I also found the article about vitamin D, TH-1 diseases and cognitive ability particularly interesting.
Of course, like every article states, more research is needed.
Oh, and I also found this Science Daily article in my bookmarks (more of that stuff you asked for Babs. even though you're too busy to read it perhaps you will bookmark it and peruse it another day ):
http://www.sciencedaily.com/releases/2008/01/080125223302.htm
Vitamin D Deficiency Study Raises New Questions about Disease and Supplements
ScienceDaily (Jan. 27, 2008) — Low blood levels of vitamin D have long been associated with disease, and the assumption has been that vitamin D supplements may protect against disease. However, this new research demonstrates that ingested vitamin D is immunosuppressive and that low blood levels of vitamin D may be actually a result of the disease process. Supplementation may make the disease worse.
Read the rest at the above link.
Do you have any
corroborating studies....
Lynn492008-10-21 14:20:03I'm unclear on which study you would like to see corroborated.http://www.sciencedaily.com/releases/2008/01/080125223302.htm
Vitamin D Deficiency Study Raises New Questions about Disease and SupplementsLynne, I know some exsist but I don't have any handy. I'm just starting to look into this stuff in the past few days (really, I'm not on one "side" or the other), so I have so far only scratched the surface. I will definitely post them as I find interesting corroborating ones.Fair enough.......Dang, I wasn't aware there was such a controversy over vit d. I had skipped a lot of posts on the subject, thinking they didn't apply to me, but now my RA doc prescribed vit d, at a dose that has raised my eyebrows, so I'll be paying more attention, and trying to read more, though all these health issues (I've been having eye problems too lately) can get overwhelming, so just wanna say thanks to all points of views, though try not to get too personal and riled up, none of us need the extra stress, beee kind.
I have a question about absorption from the sun. A friend of mine told me last weekend that her level was 4. She took vit D for a very short time because her doctor told her that the time it takes her to walk out to her car and back into the house is enough vitamin D for the day. Does this sound right? No, not really but again, like GoGo, I'm just scratching the surface. I'm under the impression that natural D is the best way to go and thats for something like 15 minutes a day. Maybe it's supposed to be a week but that just seems low to me.
Sorry, no help with the amount but I can say that everything I've read so far says natural D somehow can't be toxic. I have no idea why. The supps seem to be the 'possible' problem.
Pip
A fair-skinned person can manufacture 15,000 IU or more of vitamin D in as little as 30 minutes of optimal sun exposure(minus sunscreen)and skip the sun glasses, the light needs to enter thru the eyesI wonder how so many of us got this low? Is it not enough sun, poor absorption, diet low in D, a disease process? Maybe a combination.Except they add D to everything now. Keep an eye on labels. It's amazing. It's one of the reasons I'm thinking it's possibly a reason for the 'supposed' jump in AI diseases.
Of course, you can't prove that.
Pip
somewhere I read that you have to have like 20,000 ounces of Vit D fortified OJ to get your daily ......
[QUOTE=lorster]I wonder how so many of us got this low? Is it not enough sun, poor absorption, diet low in D, a disease process? Maybe a combination.[/QUOTE]
I think it's a combo of lack of sunlight (does anyone not use sunscreen) As you get older, it becomes tougher for you body to metabolize Vitamin D and while Vitamin D is added to a lot of food products, the recommended IU is still way to low........That however is about to change
A review study (one that summarizes the evidence from a number of other studies) published in the July 2006 issue of the American Journal of Clinical Nutrition found that the currently recommended daily intakes of 200 and 600 IU of vitamin D for younger and older adults, respectively, were insufficient to provide the blood levels of vitamin D needed for bone mineral density, lower-extremity function, dental health, and to lessen risk of falls, fractures, and colorectal cancer.
Adequate blood levels of vitamin D to provide for these health needs begin at 75 nmol/L. Blood levels of vitamin D between 90 and 100 nmol/L are optimal.A daily intake for all adults of >/=1000 IU vitamin D (cholecalciferol)/d is needed to bring vitamin D concentrations in no less than 50% of the population up to 75 nmol/L. If you are concerned about your vitamin D status, ask your doctor to check your blood levels of 25(OH)D3. The major circulating form of vitamin D in the blood, this form of the vitamin is the true barometer of vitamin D status.
FYI, my level at first testing was 4.
Thanks for info........It's more good stuff Hi Babs -
This is precisely why I can't understand the D info. This artlicle refers to a study but doesn't annotate so you don't have any idea who the real author of this article is or where he got his info. The cites on the bottom do not appear to go in any order.
Pip
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