looking for some insight…and vit D info from MP'ers

[casey]

Hi,

Hope is well with you all!

I have some confusion i hope someone may be able to provide a little insight on.

As you know, my son (13)  had a pos ANA , equivocal dsDNA (lupus) titre and pos myco test last july. ( i have MCTD, mother has lupus, RA)

He has been on AP since then. He also has gluten/dairy sensitivity which we have addressed.

He just had a recent ANA and dsDNA test done. They are BOTH now NEGATIVE. My AP doc says you can have a pos ANA just by being celiac/gluten sensitive . I understand the dsDNA can go up and down during flares or disease process but was unaware of an ANA going negative. So maybe gluten does have to do with this as with myco or other infection, you can still have disease with neither ANA or dsDNA. Any thoughts on this?

Getting to my other question, in which i havent asked my ap doc till appt time in march and thought i may get some insight on this vit D thing. He has had the vit D monitered 3 times since last yr.

They read:

25 hydroxy D   (normal 76-250)            I-25 hydroxy D (normal 40-150)

                             81                                                           122 

ANA now neg        65                                                            140

 

So given this, even tough the ANA and antidsDNA are neg, what is the relation of the vit D numbers? I am not too swift with the vit D thing but have some idea that this plays a roll in these infections. We do not supplement with vit D other than fish oil. I dont quite understand the MP but know there are apparently is a ratio or something with vit D and infection.

When i look at this, i feel great that the ANA and dsDNA are neg for now but I am cautious of jumping the gun of where he stands as many people have neither of these pos and still have disease .Could anyone with some insight , whatever it may be, pass it to me of what they see with this.

Thanks so much,

Casey

                      

 

[Anonymous]

Casey:

I will refer you to the most recent paper by Trevor Marshall?..

Marshall TG. Vitamin D discovery outpaces FDA decision
making. Bioessays. 2008 Jan 15;30(2):173-182 Epub ahead of print Online ISSN: 1521-1878 Print ISSN: 0265-9247 PMID: 18200565
Available from publisher's website at URL
http://www3.interscience.wiley.com/cgi-bin/abstract/117885976/ABSTRACT
Available from PubMed at URL
http://www.ncbi.nlm.nih.gov/pubmed/18200565

A press release summarizing the far-reaching implications of this research is available online at
ttp://www.prweb.com/releases/2008/1/prweb639651.htm

Also check out a blog put together by a CFS sufferer who is on the MP. There are several good articles about vitamin D and lots of other helpful information there.

vitamin d — Bacteriality.com

I have RA and am on the MP. I never, ever, ever would have made headway against this disease if I would not have understood and dealt with the issue of vitamin D dysregulation.

There is nothing worse than seeing our children suffer. Best wishes to you and your precious son.

Carol

[Bill]

Carol

 Thanks for that post . The article linked to bacteriality is a potent one. I started additional supplementing with that crap 7 months before the RA hit. Coincedence?? I think not.

Heal well,

Bill

[casey]

Oh Carol,

I was feeling a little better knowing the ANA and dsDNA were negative but now that i read some info on MP, i feel doomed with my sons vitD levels.

Dont know what to say or feel…again…at this point!

Casey

[Cubby]

My ANA is 0 but I still have Scleroderma.   However, I am very close to remission from the AP and along with that, I do Photopheresis.

[John McDonald]

Casey,

If the D units are ng/ml and pg/ml respectively then by Marshall lights both measures are quite high despite the so called 'normal range'. But don't panic. The 1,25D has a very short half life, about 6 hours. So wheras there may be a long term impact, per Marshall, to having high 1,25D for a long time, that particular measure is quickly correctable with the MP Benicar.

The 25D has a much longer half life and by Marshall lights is the more pernicious of the two, it can be reduced by diet. Most of us have too much 25D, per Marshall, because of all the supplementation. It occurs naturally in some foods; fish, egg yolks and mushrooms and also from sunlight, but most of us get the massive quantities that we carry from fortified milk products, breakfast cereals and vitamin supplements.

Measuring the D doesn't so much tell how sick your son is as perhaps telling why he is sick. According to Marshall the 25D is immuno-suppressive. That's why it makes us feel better. It is sort of an over the counter steroid. But if so, then supplementation upsets the body's normal balance and sets us up for so called auto-immune disease.

We start getting this stuff in infant formula, and all over the world now including poor countries.  It is the only listed vitamin that we can get by stepping out of doors, but for some reason it is considered a vitamin.

Well, enough of that.  No need to panic.

[Anonymous]

Casey:

John's comments are right on, as usual.  One thing to add…. a positive step would be to stop giving your son fish oil.  It is a potent source of vitamin D.

Carol

[casey]

Hi John,

Thank you for replying back to me. My son and i are both on AP but i have found a doc for my mom with RA and lupus(severe) who has never used AP and doesnt know much about it but uses MP.

I thought about switching over but have alot of questions and concerns about MP simply because i dont understand it and i have so much on my plate dealing with my own diagnosis and sons so i feel “lunched and overwhelmed” with all this to begin with.

However, is it possible i could phone you? I am in Ontario, Canada but i have a phone plan and will go to the end of the earth for any help so as we can live somewhat normal lives.

I have read some of the MP info on that site but i find it easier to TALK to someone that has used this and burden them with my questions.

If its possible (pretty please) that i can call you, PM me your phone number and tell me the time i can call as i am eastern here.

Thanks so much,

Casey

[tish]

hello, my ana is negative also but having disease symptoms. can you give me some input. thanks so much, i'm a little desperate right now, since my doctor thinks i'm nuts since all my test results are pretty much normal.

[Lynne G.SD]

Hi Tish;
        I really do not trust lab tests very much.When my SD was very bad and I was given a year or so to live all my tests were normal except for my red and white bllod cell count that was off just a tad.At my worst my SED rate was a mesily “2” I believ more in how we feel that what the labs say

[Author]

Posts