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What ARE we supposed to be doing in regards to Vit D?

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Posted 1/29/2015 2:28 PM (GMT 0)
Hi folks!

I posted a thread about the need to have comprehensive Vit D testing and then realized I'm confused about what we Lymies should be doing.

https://www.healingwell.com/community/default.aspx?f=30&m=3312543

At first I thought I should stop supplementing.

My Vit D 25-OH (inactive) level is 58.....my 1,25 di-OH Vit D (active) level is 187.5 (10.0-75.0)!!!!

However, I found forum posts wherein people said their LLMD's told them to continue with Vit D supplementation even with levels like mine.

Can anyone shed some light on this?

Thanks to all who post!
Posted 1/29/2015 3:30 PM (GMT 0)
Mine is always on the low side, so I take it all the time.
Posted 1/29/2015 3:36 PM (GMT 0)
Like sugar, vitamin D feeds Lyme bacteria. Knowing this, my doctor still has me take vit D as the importance of it outweighs the feeding, especially while on abx, as the bacteria will simply be killed when tryin to reproduce.
Posted 1/29/2015 4:44 PM (GMT 0)
I just got back on Vit D. My level was "critical low" at 15, no idea of the reference range but I think it's supposed to be above 60? Or 30?

I've heard that it feeds the bacteria too, but I'm following doctors orders anyway. Glad he is the expert and not me!
Posted 1/29/2015 5:35 PM (GMT 0)
My D 25-OH recently tested in the 20's. I started taking Vit D and feel slightly better.

I think around 50 is the cutoff, but there is a lot of controversy on Vitamin D supplementation. It depends on who you listen to.

It's still early, but I think it's helping me. Gosh, another thing that's bad for Lyme!

I think you also need the proper amount of magnesium and calcium. They all interact and, if one is too high or low, it can throw everything off.
Posted 1/29/2015 5:49 PM (GMT 0)
When we discover that there is something that 'feeds' the Lyme bacteria the thing to do is to supplement more so that your body still gets what it needs, not withhold it. Then the only thing that happens is the body is deprived of a sometimes vital nutrient!! We surely can't expect the body to heal without providing it what it needs!

I don't remember my exact numbers for my Vitamin D tests (truthfully, I was much more concerned about my thyroid and adrenal numbers), but my doc was very concerned with how low my levels of vitamin D were. I'm doing well now she says, but I'm still on 5,000 units a day.

The one thing that I'd like to pass along is that my doc has insisted that I take vitamin A along with the vitamin D for better absorption of the Vit. D.

I consider this to be a really wonderful article on Vitamin D - although they left out the vitamin A to help it absorb better ;)
:
www.lef.org/Magazine/2012/SS/Vitamin-D-Blood-Levels/Page-01
Posted 1/29/2015 7:28 PM (GMT 0)
When I saw the gastro recently, he expressed concern about my Vit D level was too low; my 25-hydroxy is low and my 1,25 di-OH is high. He said something about the net result of that being that I'm deficient. My appt was already going 1/2 hr long so I didn't press the issue but I was not following him. When I see my LLMD next week I'll ask her about it again. Last we spoke about it after these results she didn't want to supplement just yet (and I can't remember why).

-p

Post Edited (Pirouette) : 1/29/2015 12:43:24 PM (GMT-7)

Posted 1/29/2015 7:33 PM (GMT 0)
Son's vit D was 21. With supplementation it went up to 31. 30 and up should be supplemented but some drs don't supplement unless it's under 25! Go figure. Never got tested so I don't know how mine is.
Posted 1/29/2015 7:39 PM (GMT 0)
I think it's a lot like adrenal fatigue - most docs won't do a darn thing about it until the patient is in a full blown Addisonian crisis - which is life threatening. We need to be involved in proactive medicine, not waiting until we are in a life threatening situation to treat something!
Posted 1/29/2015 7:55 PM (GMT 0)
I found some scary information for us Lyme patients.

Take a peek at the first paragraph on page 2 of this link

http://www.lymebook.com/marshall-protocol-vitamin-d-book.pdf

"...an increase in 25D levels induced by Vitamin D supplementation may lead to long-term disease progression by facilitating proliferation of the intracellular CWD bacterial pathogens".

The 25D levels are the ones our doctors most commonly check.

It seems that, for those of us taking Vit D supplements in attempts at improving those levels, we could be at risk of developing cyst forms.

Heck, many of us took/take doxycycline and are at risk of developing cyst forms, too.

We can't win - huh?

Post Edited (cd3764) : 1/29/2015 12:59:22 PM (GMT-7)

Posted 1/29/2015 8:01 PM (GMT 0)
That is Marshalls view of the role of vitamin D in these infections. While I agree that some people may have to go this route to heal, they are in the minority. For most of us, withholding vitamin D is NOT going to help us heal, only lead to more health issues.

I panicked when I first saw that too - then I looked into it and realized that if we withheld everything that the Lyme bacteria feed off of, we would never heal and be in serious trouble health wise.

And....I have the benefit of having been on this forum for a long time and have watched many people supplementing with Vitamin D and heal well.....including myself. I'm taking vitamin D supplements (10,000 units for 4 months and now down to 5,000 units daily) and I'm healing from Lyme and severe adrenal fatigue with hypothyroidism and I'm almost done with my treatments - so his claims make no sense - I shouldn't be healing if it were correct.
Posted 1/29/2015 8:11 PM (GMT 0)
Thanks for all the posts!

The Vitamin D Council recommends a level of 50-70 for optimal health.....and they are referring to the 25-OH level (the inactive form of Vit D).

So, what's the deal for people like me who have "good" 25-OH (inactive Vit D) levels but, very much over-range 1,25 di-OH levels of active Vit D??

It seems people can also have lower levels of the inactive form yet over-range active levels.

I plan on asking my LLMD about all of this but, those with experience are often able to tell me more :)

Post Edited (cd3764) : 1/29/2015 1:21:07 PM (GMT-7)

Posted 1/29/2015 8:31 PM (GMT 0)
Hmmm.....looks like Dr. Mercola might have an answer for me:

http://articles.mercola.com/sites/articles/archive/2009/03/14/clearing-up-confusion-on-vitamin-d--why-i-dont-recommend-the-marshall-protocol.aspx

"Measuring 1,25-D is Like Herding Cats

Marshall states that 1,25-D levels are elevated in people with chronic infectious diseases. [Remember, 1,25-D is the active form of vitamin D, once it’s been converted from 25(OH)D.]

He relies on 1,25-D levels as indicators of the disease process. However, 1,25-D values can fluctuate tremendously up and down for many reasons, other than disease processes. 1,25-D is influenced by calcium, phosphate, and PTH, just to name a few, which makes it meaningless to use it as a marker for dysfunctional vitamin D production or regulation.

In fact, some studies show little to no correlation between 1,25-D and 25(OH)D levels[x][xi]. Many body tissues have the ability to generate 1,25-D themselves, as a way to self-regulate, rather than solely relying on serum 25(OH)D.

This is why the standard used by the medical community for assessing health is serum 25(OH)D, which is not subject to these variables and fluctuations. This test has been standardized, recognized and used by every vitamin D expert in the world. I have talked to many of the leading vitamin D researchers and not one of them had anything favorable to say about the misinformation Marshall is promoting."
Posted 1/29/2015 8:45 PM (GMT 0)
I am once again confused after finding this:

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=176

And, it was because I'd received Suzy Cohen's newsletter about the importance of checking both active/inactive Vit D levels that I even asked to have both tested.

http://suzycohen.com/articles/vitamin-d-testing-should-be-more-thorough/

How the heck do we sort through this stuff?
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