What's the story with vitamin D?

[JoyBop]

We had dh's vitamin D tested and it was deficient. I'm wondering if anyone here has made a connection. I have been suspicious of the intracellular bacteria theory for years due to my kids other autoimmune issues and this really raises the flags. If that theory is true then supplementing him with vitamin D may make things worse. Does anyone have any experience/suggestions? We have chosen to supplement him with 1000 ius a day for the time being but not sure which direction is right. Perhaps its time to pursue and immunologist? Anyone know of any good ones in MA?

[Mayzoo]

Not much help here, but kiddos vitamin d is not deficient or even borderline (57.2 ref range 30-100), and her Calcitriol is actually a bit high. Hope this helps you work out a theory .

[Kimflow]

Joybop,

 

Would you expand on this part?

 

I have been suspicious of the intracellular bacteria theory for years due to my kids other autoimmune issues and this really raises the flags. If that theory is true then supplementing him with vitamin D may make things worse.

 

I have a friend who swears they cannot tolerate any Vitamin D even though they are deficient. What is the intracellular bacteria theory connection.

 

Thanks.

[lfran]

Vit d always increases ds's tics

[JoyBop]

Sure. There is a lot written but here is a comprehensive document.

 

http://autoimmunityresearch.org/preprints/WaterhouseAnnals2009Preprint.pdf

 

Here is amother article

 

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=175

 

My kids that have PANDAS also had horrible HI problems that were severe and never fell into any diagnostic criteria except for something autoimmune. They both outgrew it and were both managed well by removing foods that caused inflammation. When I saw inflammation, I mean they caused intestinal bleeding and paralysis of their intestines requiring hospitalizations. There were never any signs of "allergy" ex no blood tests were positive and no eosinophils found in intestinal tract. Dd outgrew at age 3 and got pandas soon after. DS outgrew at 5 and got pandas within the year.

[DsMom]

My ds13 has not been able to tolerate Vit D for the last 16 of the 22 months he's been on this roller coaster. The Vit D makes his tics worse, as well as his mood/ depression totally tanks when he takes any Vit D supp. Also,with Omega 3 oil supps....for what it's worth....?

[norcalmom]

We like Vit D. A lot.

 

I think that it has helped DS aot in turning around his underlying infection, improving his immune function.

 

Never had any exacerbation a related to taking it.

[LNN]

Vitamin D plays many roles but four important ones are 1. to support the immune system; 2. to support bone strength/growth; 3. to serve as a hormone that encourages sleep and 4. to act as a dopamine precursor.

 

For those who are high in dopamine, adding vitamin d can trigger or exacerbate tics, as dopamine plays a role in motor movement/control (e.g. Parkinson's is a dopamine dysregulation). Some people have a genetic abnormality in a gene called VDR Taq. From Heartfixer:

 

Vitamin D stimulates the enzymes that generate dopamine, a good reason to keep your Vitamin D level up, as we need dopamine to defend against microbes and metals, and to keep our mood up. While we utilize SAMe (and indirectly other methyl group donors) to degrade dopamine, we also utilize methyl donors to generate dopamine. Individuals with a normal Vitamin D receptor, those who are VDR Taq (-/-), make plenty of dopamine. They tend not to need or to tolerate methyl groups or dopamine precursor substances (my comment - like a vitamin D supplement). Individuals for VDR Taq defect have lower Vitamin D levels, make less dopamine, and will need and tolerate dopamine precursor substances and methyl donors. http://www.heartfixer.com/AMRI-Nutrigenomics.htm#VDR%20Taq:%20%20Vitamin%20D%20Receptor%20Taq%20Abnormality

 

So one reason someone may not be able to tolerate a D supplement (always use D-3) is that they may have a VDR Taq abnormality. My son has this and has other genetic abnormalities that make him generally high in dopamine. Yet we live in the north and need to supplement D in the winter months to help him keep his immune system strong. So when we add D3 for the winter, I'll increase the B Complex he uses that's high in niacinamide that sucks up extra methyl groups. Hopefully, this will help him tolerate D3 better. FWIW, niacinamide also helps mellow him out and improves his moods, ability to handle stress and reduces his tendency to get angry when frustrated. This is where his 23andMe/Genetic genie report has helped a lot, since I have a better understanding of which supplements work with his body and which work against him.

[lfran]

How much niacinamide do you give him? Thanks!

[LNN]

He takes SourceNaturals Coenzymate B Complex (orange flavored). It's supposed to be sublingual, but the taste is nasty. So I crush it and put it into an empty gel capsule. Two capsules contain 39mg niacin (multiple forms). In the summer, I've been giving him one capsule (so 20mg) but will increase to 2 capsules in the winter.

 

Because it's supposed to be a sublingual and I'm giving it as a capsule, I can't say how much gets absorbed. But this particular blend uses adenoB12, I'm less worried about the effects of stomach acid on the b12. I'm sure it's less effective this way, but it's the only B complex that has a blend that seems well suited for his needs, so the capsule is better than nothing. Many people on Amazon complain of the taste and I can't blame him for not wanting to suck on it. It is pretty objectionable.

 

If, when I add D3 back in once we start indoor hibernation, if he starts to anger quickly, I may add some more niacinamide. Since I crush the sublingual tablets into a powder and then fill my own capsules, it'll be easy to open a 500mg niacinamide capsule (or several) into the mix and increase that one component. It'll be a trial and error unfortunatley, but the kids are used to it from me.

[searching_for_help]

I'm so confused. LLM wrote:

 

Individuals with a normal Vitamin D receptor, those who are VDR Taq (-/-), make plenty of dopamine. They tend not to need or to tolerate methyl groups or dopamine precursor substances (my comment - like a vitamin D supplement). Individuals for VDR Taq defect have lower Vitamin D levels, make less dopamine, and will need and tolerate dopamine precursor substances and methyl donors. http://www.heartfixe...Taq Abnormality

So one reason someone may not be able to tolerate a D supplement (always use D-3) is that they may have a VDR Taq abnormality.

 

I take from the heartfixer comment that those with VDR Taq +/+ NEED vitamin D, but the last sentence says some may not be able to tolerate a D supplement WITH an abnormality. I realize I get things confused at times... could someone please clarify for me? My son is VDR Taq +/+, and I don't know whether to supplement with Vit D3 or not. What would the precursor be that he would need? Thanks so much!

[LNN]

Sorry - I created the confusion. My son's VDR Taq status is Normal, no anomalies. I went back and edited my first post to make it more clear. That's what happens when you go away on vacation and start posting again before your brain switches back on. (it's my DD who is VDR Taq +/- and needs a D supplement - I knew it was one of them but got them switched in my head). Because my son is normal VDR Taq, I have to be careful when adding Vitamin D, as he could get too high in dopamine. If your son is VDR Taq +/+, then he could and probably should do well on a Vit D Supplement.

 

You were reading it all correctly. What I wrote originally was incorrect. Thanks for pointing it out!

[searching_for_help]

Thanks, LLM! My perimenopausal brain is so used to being confused, that I just figured it was me! Thanks for clarifying.

BTW - your posts on this forum have been very helpful to me. I can certainly appreciate the time you have put in figuring all of this out.

[JoyBop]

Thanks for taking the time to post all if that. Now I am finally beginning to understand the value in genetic testing. We hadnt considered it yet but now I am thinking about it as we are realizing the importance in all these factors.

 

We started DS on 1000 ius of vitamin d and he hasn't had any ill effects. He also started Zoloft about 10 days before and he told me last night he feels so happy he just can't help but smile big. It brought tears to my eyes! Who knows, maybe the d is contributing

[PIK]

I highly suspect that I have had rheumatic fever as well as all the PANDAS OCD symptoms etc. My vitamin D was severely deficient. The lower end of normal was 35 and I was at 9. I feel much better with vitamin D replacement of 50,000 units weekly and have had no ill side effects. I am on a maintenance dose now of 2000 mg per day.