Vitamin D - Helpful or Problematic?

[TheMoonIsBlue]

Don't know if these Polls are actually helpful at figuring anything out........but I thought I'd give one a try!

 

[penny]

Thanks for doing this!

I think at the very least they help folks remember that not everyone has the same reactions to a supplement. But maybe it's just me that needs reminding

 

[Mij]

I don't know whether vitamin D3 is helpful but if I go over 2000iu's my viral symptoms get worse. I take it because my levels were below 25 at the time of testing.

 

[TinyT]

I am on Vit D 50,000 I.U. a fortnight, don't really know if it makes things worse. Hasn't made things better anyway.

 

[Sushi]

I didn't take the poll cause I am on GcMAF and thus can't supplement with Vit D--though I did before.

But one interesting point (sorry, can't find the reference) is that some aspect of an active Epstein Barr infection can glom onto the Vit D receptor thus, (I'd think), making it more difficult for Vit D to be utilized.

Someone with more science background would have to take the implications of this further--just a footnote to the conversation.

Sushi

 

[Snow Leopard]

I had really low vitamin D, so I took 3000IU of D3 daily for a while before dropping down to 1000IU. I noticed no real difference in symptoms, but it can't hurt if your vitamin D is low.

 

[WillowJ]

I had really low Vitamin D (both D2 and D3), and took 5000 IU D3/week (Rx) for a while before dropping down to 1000IU. (otc) The prescription helped a lot. When a different doc rx-ed D2, it did not help at all. I don't really notice a difference with the OTC, but I don't remember to take it always, and I'm not sure the brand is good (it's a tablet, not liquid).

I do have confirmed reactivated HHV-6 (high, not iffy), but no other confirmed infections (some I suspect, have not been tested for; and one we suspect, can hide from the immune system).
Web disclaimer: this is private information and not to be used elsewhere.

atypical Lupus? how is this diagnosed?

 

[rlc]

Hi WillowJ, all you need to know on lupus and how to diagnoses it can be found here http://www.lupuscanada.org/english/living/1000faces_sle1.html

All the best

 

[TheMoonIsBlue]

I used to tolerate Vit D in the past when I was not as ill. As my health has deteriorated, my ability to tolerate Vit D has as well. Maybe I could tolerate 400mg if they even make that dose anymore! I am so sensitive to meds and supplements that my dose usually needs to be much lower than what other people take.

 

[TheMoonIsBlue]

I didn't take the poll cause I am on GcMAF and thus can't supplement with Vit D--though I did before.

But one interesting point (sorry, can't find the reference) is that some aspect of an active Epstein Barr infection can glom onto the Vit D receptor thus, (I'd think), making it more difficult for Vit D to be utilized.

Sushi

I read this somewhere also. I wonder if, with an active EBV infection, if the Vit D isn't utilized, what happens to it? Where does it go? LOL. My brain and muscles? Maybe that is why it makes me feel so sore and inflammed.

 

[taniaaust1]

I cant answer the poll as the answer I'd give isnt there.

Vitamin D is important if ones levels are very low as a very low Vitamin D level puts one at a much higher cancer risk. So one can say it can be a helpful preventative if your levels are low.

I havent found vitamin D symptom wise to be helpful thou Im very deficient but do think it was wise to take it as according to D studies my levels were at the highest risk of getting cancer group. I've been put on 4000IU daily (hospital in past gave me a 50000IU doseage) but as far as I know Ive never got my vitamin D level in normal ranges (maybe if I did get it there maybe something would be helped)

 

[cherlyn]

The Moon is Blue,

Thank you for posting this poll. I find it very interesting. I have also followed your other post regarding this issue.

I have tried vitamin D in the past with my son with no noticeable results. He had a very low vitamin D level at that time. As he continues to struggle, we decided to go back and re-visit some of the things we have tried in that past. Since a doctor we had seen at that time had recommended starting with several of the 50,000 unit doses, I decided to start with that again. I don't know the exact specifics time-wise, but within a short time (I think one to three days) of taking the first (and only) dose, he took a very significant dive with his overall symptoms. After a few days I began to wonder if there was something that triggered that but had no idea. The D3 then came to mind, and I thought, no, surely not. However, I continue to be very suspicious and seeing this poll makes me even more so. At first I thought it couldn't possibly be, but now seeing reference to others having this problem makes me even more suspicious. I wish I had made notes of what happened when. I think it has been somewhere in the two to 2 week timeframe at this point. Over the past two or three days, he has been seeming to begin to approach something closer to his "normal" baseline, but he is not there yet. I still can't be sure this was the cause, but I am strongly suspicious. He has a tough road just at his "normal" baseline, but this was a very significant drop and I haven't seen a drop-off of that magnitude in quite a while. I am really kicking myself for coming up with this grand idea! We should have started at a lower dose.

There is no way to know for sure if the D3 was the cause, but he will not be taking any more any time soon, that's for sure as the correlation seems awfully close! Thanks for posting on this issue. It makes me realize that my suspicions of this as a possible cause were not out of line afterall.

 

[*GG*]

But one interesting point (sorry, can't find the reference) is that some aspect of an active Epstein Barr infection can glom onto the Vit D receptor thus, (I'd think), making it more difficult for Vit D to be utilized.

Sushi

Interesting, never heard that before about EBV, that's how my CFS started.

But I had my Vitamin D tested about 1.5 years ago ( I also started LDN around the same time) and the level was around 30. So I upped my dosage some (cannot remember all the numbers) but what I found (roughly) in my case was 1,000 IUs of D3 gave my blood levels an increase of about 10, so I think went up to 4 or 5K, and noticed this correlation increased it some more because I wanted a high level of around 100 or less. I had my blood level checked after taking D3 of 7 or 8K for a few months and I think my value was around 70, so that's why I went up to 10K.

I came down with some illness at the begginning of this year, so I increased my dosage to 10K of D3 and will probably have it tested later this month. I think I could go down now, but did not want to catch another bug which seem to come around in the spring!

GG

 

[.o.Amy.o.]

I couldn't vote because I find it makes me worse and better. I can't tolerate any capsule form of vitamin d but the sun has a big effect on my symptoms. Generally I get worse when I first go out in the sun and worse still when I go back inside. A few hours later I start to improve a little. I do know that the sun has reduced my pain levels significantly on a couple of occasions but my neuro symptoms are more severe. This could also be related to an increase in serotonin at the same time so I can't say for certain that it's the vitamin D.

 

[Tulip]

I dont really fit into the poll.

Mine would be: Low in vit d, taking d3 and feel no different.