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vitamin D - answer for our situation


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sorry -- I think someone asked me what's going on with our Vitamin D situation recently -- I couldn't find the post to answer.

 

our latest -- after long ago thinking D activated ds and recently blood testing at low levels -- maybe around 20(?) -- we started up again around Christmas with 200 iu/day. after about a week, increased to 400 iu. no seeming response to either. after about another week, increased to 600 iu. ds then started having symptoms -- the most striking that I remember is this thing he does with his older brother. he did it quite pronounced in early treatment -- I don't so much think it was one of initial symptoms. he is way overly concerned with what brother is doing -- like trying to have everything be exactly the same for them -- eating, moving, dressing -- as if trying to have exact same movements like they are the same person. I think probably other symptoms too.

 

we're almost coming up on 5 years, so - you'd think I'd be quick by now -- but it took me a week or so for the light bulb to shine that it could be the D. so - I think we went back down to 400 and after a few days/week, those symptoms disappeared.

 

sometime in the spring, we changed ds's general sup regime -- we were focusing on zinc/copper balance - with some others. it wasn't such a good change, and ds had some times of feeling sick (including 2x of actually throwing up in the classroom -- made it to the trashcan. good/shocking news -- not at all too concerned - went to nurse's office and then back to class)

 

anyway -- due to that, we put a hold on the D -- not really planned, just went by the wayside. he has not been having any D since spring. it's usually in the back of my mind, but I am not sure what to do about it.

 

long story longer -- today he ART tested to only be able to tolerate 400 iu. interesting -- this doc is not one who is working/concerned about the D. I didn't tell him the long story -- just that ds blood tests low in D and traditional docs are concerned it should be higher and asked what he thought about it.

 

I think D is somehow involved for us but not one of the major players for ds. I would like his levels to be higher. still not so sure how it fits into the puzzle.

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Smarty - based on 23andMe, my DH and DS (PANS) can't tolerate a lot of D (VDR Taq +/-). Both have taken high doses in the past and I can't say if D ever effected DS's symptoms, as it just wasn't one of the things I ever had on my radar. But since doing our own supplement "makeover" in the spring, I eliminated the D from DS's regimen to try to lower dopamine and eliminate "noise" while we tried to find the source of an OCD episode (artemisinin "cured" it tho we're not sure what the trigger was).

 

But this fall, I know I'll need to add some in, as New England winters make everyone low in D - and DS has tested low in the winter. So my plan is to use a D3/Vitamin K supplement with the hopes that the K helps direct the D into bone development more than toward dopamine synthesis. Anyone else have any suggestions or experience?

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My son and DH are on Vitamin D3 complete which has Vit. D, A, & K2 in it (AllergyResearchGroup). I believe the vit. A works along with the D somehow and if I remember correctly, the K2 works with the brain somehow.

 

Now I am taking a D3 only supplement and the doctor has me taking MK-7 (Jarrow) with it to help with absorption.

 

Also interesting, as I was looking thru old notes from 2 yrs. ago, my ART doctor said that "ds should not be taking vit. D." This was at the beginning of treatment so it must have been feeding something that we were trying to get rid of (lyme--babesia?)

Edited by JuliaFaith
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  • 5 months later...

i am back on this vitamin D puzzle -- anyone have any thoughts for me?

 

ds has been doing well. school, attitude, ART testing - good. he has weathered a few colds well this fall. mid November I put him back on vitamin D -- 200 iu. (interesting that I couldn't remember why I took him off, but found it in this post :)) he has not been tested in a while, but was still around 20 at last testing and has never had long supplementation.

 

now -- after 5 weeks -- he has some symptoms but does not seem to have any illness symptoms. of course, the last few weeks have been busy, so my recollection isn't so good. first I remember is at Christmas dinner when he screeched that he didn't want an assigned seat. the next few days had a few other incidents of quick overreactions. he is able to recover fine and move on - but the very short fuse is there. he also had issues with going somewhere 'without being told' largely because it is a 'waste of his time'. he has reacted to others 'being mean to him' and 'just wanting him to be unhappy'. he is frustrated with a school project because it is 'just too hard' and a 'waste of time'.

 

these are all key phrases that usually indicate something is up. today was day 3 off the vitamin D and I think I see improvement. he ran out to a store with me, kind of far away, and didn't blink an eye. seemed more flexible than the past week or so.

 

I looked back and seemed to find mention that trouble with vitamin D could indicate high levels of dopamine. should I think about that? is that something that can be tested?

 

thanks for any thoughts.

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I was just reading about this:

 

"I read another conference (different site - looking for link) where Dr. Fry talked about FL1953:

He said that those with FL1953 are often Vitamin D deficient. And that most with it, when they take Vit D - will feel sicker. That until the Vit D levels get higher, they feel sick when taking Vit D."

You might also think about testing Nagalase as well.

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Kath - you know you and I are always on the same page when it comes to this stuff. Ironically, I just had a similar OMG moment this afternoon about DS and B12 and his tics. I absolutely, positively believe that small out-of-balances in certain vitamins/minerals can cascade into many of the symptoms I've come to associate with PANS.

 

Even tho us northerners are all conditioned to supplement with D3 in the winter, I think you're on to something with your experiment. There's some discussion of Vitamin D and dopamine under the VDR Taq and COMT sections of the heartfixer doc http://www.heartfixer.com/AMRI-Nutrigenomics.htm and probably Yasko's book. You may come across something there that sparks ideas or supports your thinking. Time and again, I keep learning that what's "supposed to be" good for everyone isn't always good for my kid.

 

Also, while there may not be a connection, your whole copper/zinc journey? Copper upregulates the MAO-A gene, which degrades epinephrine, serotonin and dopamine. D synthesizes dopamine. Coincidence that the two vitamins/minerals on your radar both involve dopamine synthesis and degradation?

 

Pat yourself on the back for this "find" and please keep me posted on how it goes. (BTW - can you PM me your email again? I think I accidentally deleted while cleaning up my inbox).

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DS13 was low when tested last year. I sup'd for a while, then slacked off. When we went back to LLMD in late Sept. he wanted to make sure he was getting his Vit D. so I gave it to him consistently from that point until he had his blood work redone the week of Thanksgiving. I don't remember if things got worse on it, but he did have some pretty dark periods while taking it. (wanting to die, suicidal etc). I haven't given it to him since Thanksgiving, about the time he started Augmentin for Pandas. Actually, I did give it to him twice this week thinking I need to be giving it to him periodically to keep his levels up. (they came back around 60). I'll try to be more vigilant and note in journal when I give it to him and behaviors.

 

Oh, and last year Dopamine (through urine test) tested high.

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I am finding this discussion so interesting because for several years my son has been low on D and drs prescribed high amounts 5000-10,000 iu a day for 3-6 mths. After a few days on these doses he is worse and I stop it. We have tried many times with the vit D and it always seems to make him worse but Drs do not agree it could be a problem. I definitely think he cannot tolerate it.

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Wow. I never thought of D being an issue. Almost 3 years ago when we started this journey, our LLMD recommended supplementing with 5000 iu D3/day and we have be doing this ever since.

 

Can someone comment on the D possibly feeding Lyme, Babesia, etc (it was mentioned in one of the posts here)? We cannot eradicate Babesia and I'm getting extremely frustrated. Maybe this is a clue.

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  • 1 month later...

Just came across this thread. Our DS is going through Lyme treatment - multiple Abx and several supplements. His tests consistently come up low on Vit D. I am confused at the moment - should we give him large doses to get the numbers up (currently around 25) because Vit D is part of the Immune response? Or should we hold back because we end up feeding the Lyme family of infections?

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