Treatment with vitamins? Also, has anyone tried Turmeric?

[Elizabeth]

A helpful guide for us in dealing with autoimmunity and PANS was; "identify the triggers" , "address infection (strep, gut dysbiosis, mycoplasma)" "heal the barrier systems (gut, blood brain barrier)" and "reduce inflammation". In regards to tumeric/ curcumin, here is a Pub Med research article from March 2014, and one from the Journal of Neuroinflammation".

 

http://www.ncbi.nlm.nih.gov/pubmed/24382451

Exp Neurol. 2014 Mar;253:102-10. doi: 10.1016/j.expneurol.2013.12.016. Epub 2013 Dec 29.

Curcumin protects axons from degeneration in the setting of local neuroinflammation.

http://www.jneuroinflammation.com/content/8/1/125

Conclusions

Collectively, our results suggest that curcumin is a potent modulator of the microglial transcriptome. Curcumin attenuates microglial migration and triggers a phenotype with anti-inflammatory and neuroprotective properties. Thus, curcumin could be a nutraceutical compound to develop immuno-modulatory and neuroprotective therapies for the treatment of various neurodegenerative disorders.

 

[qannie47]

Turmeric has been very helpful with motoric movements and emotional lability. Just make sure its a good one. We have used new chapter, turmeric force. I have also used optimized curcumin which is the root by douglas labs. My son has not needed motrin for 6 weeks since we started

[JenniferG]

our kids don't respond well to turmeric. they are like your kid compound hetero for MTFHR. vit b metylcobalamin works for ds in very small doses but not for dd. cianocobalamin is not recommended. there is another one that you can get at Yasko's.

Copper can be your problem -- there was a recent post with high copper kid, check it out. Zinc should balance it.

vit d is hard to bring up. perhaps in some roundabout way depending on your kid's other mutations.

we do well on general anti-inflamatories like fish oil - but we have COMT and CBS mutations.

What do you mean by "compound" hetero. My daughter is hetero for MTFHR. We tried really low dose awhile ago...but she didn't do well... I think. It was in the middle of a mess of other things. And now we are stuck. She has yeast issues and I worry she has trouble detoxing. Our integrative wants to address the issue but she wants to start off high. And isn't concerned about other mutations.

 

What is the problem with fish oils and COMT and CBS mutations?

 

We have been on Vit D 2000 IU. It brought up the level from 30's to 50's. But it took 6-8 months.

 

Copper...if she put them on Zinc would it bring it down....even if it wasn't high?

[3bmom]

I wonder about copper and zinc too. I put my DS on 15mg of zinc and his mood was great but then he said he felt like he was having out of body experiences. I have read you can have this feeling from to much copper. Did I release to much copper at one time? I cut back and he was more irritable than before zinc.

 

I just got my testing kit for mutations. I am sure we have sulfur issues.

 

At the NW conference I learned that GMO seeds with glyphosate pesticide, besides chelating our essential minerals like magnesium for Vit. D and zinc, that they are encapsulated with copper. That may explain why zinc is so out of balance. There is suppose to be a ratio between the two.

 

Lack of zinc will allow your innate immune system to run amok with infections and it has been found to be a culprit in eating problems. I think Dr. Swedo said PANDAS kids have eating issues 1:5 ratio.

[rowingmom]

Did you get the reference for this?

 

You come up with the best information on GMO's and glyphosate 3bmom! Much appreciated.

At the NW conference I learned that GMO seeds with glyphosate pesticide, besides chelating our essential minerals like magnesium for Vit. D and zinc, that they are encapsulated with copper. That may explain why zinc is so out of balance. There is suppose to be a ratio between the two.

[searching_for_help]

jenniferg - compound hetero is when you are hetero for both the MTHFR C677T and MTHFR A1298C.

 

Concerning the zinc conversation: Just throwing this out to muck things up, , but my dd has all the signs of being low in zinc, but is actually high. She is very low in copper. She is also anorexic, so you would think the opposite. Basically, I'm just saying not to ASSUME that your child is low in zinc without actually testing.

 

I know everyone is worried about zinc deficiency, and rightly so, but the Great Plains Lab talks about copper and Vitamin C being necessary for dopamine being converted to norepinephrine and epinephrine. Our dd is very high in dopamine, low in norepinephrine. Not a good combination. I know many of our kids are too high in dopamine. Deficiences of these cofactors (copper and Vit. C) can also be caused by Clostridia byproducts.

 

The tricky part is how to keep zinc/copper in balance, without having to spend more money on testing.

[3bmom]

Thanks searching for help. I will try to wait for my DNA results. I also need to find a Dr that will do the testing you mention. Our Dr doesn't but since he save my son's life, its hard to change especially for my son. I definitely feel knowing your genetics will give you exactly what vitamins you need instead of throwing a dart.

 

His mood was so good and his skin really clear. This is what also bugs me is how can he have acne while on abx. Too much copper is shown with acne too but it might be like you said with anorexia, opposite.

 

 

Rowingmom, in regards to copper coated seeds I will ask my friend if she has a reference I can post. This week she is busy talking to Senators to get labeling in CA. The committee votes next week.

 

She is a PANDAS mom of three and has been educated by the very scientists who presented evidence of harm to the FDA. She also works with scientists abroad. I will do a separate post on the latest findings from Australia.

 

Our FDA does not want to stop the money train from GMO's and only tested effects at 3 months. France's test shows reproductive issues, tumors on breasts and ovaries, cancer etc. I recommend any girl with PANDAS to be checked by a pediatric gynecologist. A friends daughter at 7 has already had an ovary removed. This too gives you OCD, mental issues.

[rowingmom]

Gut dysbiosis can cause acne.

 

His mood was so good and his skin really clear. This is what also bugs me is how can he have acne while on abx. Too much copper is shown with acne too but it might be like you said with anorexia, opposite.

[Ladymavs]

My son, age 13, has been on a regimen of azith daily for several months now. He has been doing 250mg daily until the latest flare when he was moved up to 375mg. We also added 10mg Prozac. These two seemed to ease the intrusive thoughts OCD (our primary and pretty much only symptom of myco p) for a couple of weeks until we hit the fan again and the FLARE was even worse. The immunologist once again upped the azith to 500mg daily and recommended we add turmeric to the NAC, Vit D, and probiotics, we are doing already.

 

Has anyone seen an improvement adding turmeric to the mix? He said that he has many PANS/PANDAS patients who have really seen a big improvement when turmeric was added (particularly to the NAC).

 

Also, if the 500mg does not bring improvement...we will look at moving to doxy. Anyone have experience in this switch?