Treatment with vitamins? Also, has anyone tried Turmeric?

[TinyTreasures]

Have any of you tried vitamins as treatment for PANDAS/PANS? None of my son's blood tests for infections have come back positive (Mycoplasma, Strep, Coxsackie, Lyme, Influenza, etc) but he was positive on the Cunningham Panel, is compound heterozygous for the MTHFR gene mutation, is vitamin B12 and B6 deficient, vitamin D is low, copper levels on a hair test came back off the chart high, zinc low, lithium low...

 

We met with Mensah Medical this week - they do biomedical treatment with vitamins and are really knowledgeable about the methylation cycle. After seeing a post on here about it, I have been thinking for a while now that the Augmentin has been helping because it has anti-inflammatory properties (same reason Ibuprofen works), and when I asked them why the Augmentin was working they said the exact same thing! They think treating all his imbalances will have the same effect with the inflammation and we may be able to wean him off antibiotics once the vitamins start working. So I was curious as to if anyone else had tried vitamin therapy or even tried Mensah Medical?

Also, has anyone tried Turmeric? Someone told me today it is great for relieving inflammation naturally. Thank you!

 

[LNN]

My DD has responded very, very well to nutritional and methylation supplements. She too looks very Pandas-like on Cunningham's panel yet never tested positive for strep and only iffy on lyme. Her blood work showed an elevated immune response to come sort of chronic infection but we never figured out what. She did 8 months of abx and then stopped once her C3d immune complex levels returned to normal. Since then, we've only used supplements and she no longer has any issues. She's been off all abx since March.

 

Someone else on here has used Mensah, so they may be able to offer personal experiences.

[rowingmom]

We use SourceNaturals turmeric with Meriva (a blend of turmeric and phosphatidylcholine) which is supposed to make the herb more bioavailable, along with another herbal anti-inflammatory, japanese knotweed. Addressing inflammation is really important for our kids and does help decrease the symptoms produced by brain inflammation.

 

Augmentin may have some anti-inflammatory action but also is a good broad spectrum beta- lactamase inhibitor. You may be addressing undiagnosed infections while using it.

 

Just curious if you tested for the lyme coinfections - bartonella, babesia, ehrlichia - or just lyme?

 

Wonderful that you have found help with someone who understands methylation. Please keep us updated on how your vitamin supplementation progresses. Does Mensah Medical address possible mineral deficiencies as well? Some of the MTHFR deletions increase the requirement for magnesium (to help methylation) and molybdenum.

[nicklemama]

We use enhansa which is a compounded form fo turmeric. Get it from Lee Silsby. My son never tested positive for any thing either until we did Lyme and co testing. He was positive for ehrlichia and anaplasma and has symptoms of babesia. Treatment has greatly improved him.

[Broo100]

We use anatabloc and it is the only thing that has really worked for us. Powerful anti inflammatory OTC

[pr40]

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.

[Ozimum]

Yes, my DS now 19 has done really well with nutrient therapy as a major part of his treatment - along with abx. The way I see it, targetted nutrient therapy got his system working at an optimum level, so he had a greater resistance to colds - and no colds meant less chance of bacteria getting a hold to wreak havoc. Improvement didn't happen over night but slowly and steadily over about 18 months to two years. He's doing great!

 

Medical researcher Dr Bill Walsh has written a book called "Nutrient Power" and has links with the drs at Mensah Medical. They and others come to Australia regularly as part of a program here to train medical practitioners in Biomedical protocols and are very well respected among the biomed community. Seeing a Biomed dr was the best thing we've done! Best wishes!

[rowingmom]

How informative is Dr Walsh's book? Would you recommend purchasing it?

[LNN]

FWIW - tumeric produced anger in both my kids.

 

Rowingmom - Walsh's book is a validating message and a good intro to the concepts of how methylation can effect moods, neurotransmitters, etc. If you're new to the topic, it's a good explanation of why it's worth pursuing. However, IMO, it's not helpful if you already understand the concepts and have moved past the need for intros. Walsh was a pioneer on this topic decades ago and I was excited to read an update. I respect his work. But it was as if science hadn't moved forward and he was updating using his old terminology. It felt like he, the pioneer, was now behind the times. For me, it was like Chinese food - enjoyable, but left me hungry at the end. A good and simplified read for those who want to get their feet wet. Curious to hear Ozimum's take.

[rowingmom]

Thanks LLM.

 

From the glowing reviews I read on Amazon, I thought I had missed something really important. For most the idea that nutrition/methylation effects psychological function seemed to be a new concept.

[Ozimum]

Hi Rowingmom,

 

I agree with LLM. Walsh's book is a slim volume which is a reasonably easy read and an intro to a fairly broad topic. While he doesn't mention PANDAS/PANS, he covers a number of different conditions from Autism to Bipolar to Alzheimers and talks about Epigenetics. After a couple of years on this forum I felt I'd read most of what it covered (thanks to wonderful posters like LLM!) and I'd hoped for more. But at least he published something which can help to work against those closed off minds in the medical world who prescribe all sorts of stuff to our kids but consider suggesting vitamins is akin to voodoo! Meanwhile Dr Walsh is committed to teach those prepared to help our kids and rates pretty well in my book!

[rowingmom]

Thanks Ozimum. I feel much better knowing that this information isn't something new and different for parents on this forum.

It's a shame knowledgable doctors are so few and far between,

[TinyTreasures]

Just curious if you tested for the lyme coinfections - bartonella, babesia, ehrlichia - or just lyme?

 

Wonderful that you have found help with someone who understands methylation. Please keep us updated on how your vitamin supplementation progresses. Does Mensah Medical address possible mineral deficiencies as well? Some of the MTHFR deletions increase the requirement for magnesium (to help methylation) and molybdenum.

 

Thank you all very much, VERY helpful! We are going to pursue vitamin therapy either with Mensah or someone else. Still looking into it. He was only tested for Lyme...we are in AZ and he's never been anywhere besides AZ and CA so I think Lyme was a slim chance and his Neurologist didn't even want to test for it, but we pushed for it. I was also tested for it and it came back negative. I know it can be really tough to find though...

 

Mensah seems very knowledgeable on methylation, but they do look at a lot of things including metals and organic acids. I think at first they focus on the B and D vitamins, and specifically copper, zinc, and histamine results. Also Pyrrole which he tested negative for.

[TinyTreasures]

Oh and Mensah Medical also looks at thyroid function.

[rowingmom]

 

Just curious if you tested for the lyme coinfections - bartonella, babesia, ehrlichia - or just lyme?

 

Wonderful that you have found help with someone who understands methylation. Please keep us updated on how your vitamin supplementation progresses. Does Mensah Medical address possible mineral deficiencies as well? Some of the MTHFR deletions increase the requirement for magnesium (to help methylation) and molybdenum.

 

Thank you all very much, VERY helpful! We are going to pursue vitamin therapy either with Mensah or someone else. Still looking into it. He was only tested for Lyme...we are in AZ and he's never been anywhere besides AZ and CA so I think Lyme was a slim chance and his Neurologist didn't even want to test for it, but we pushed for it. I was also tested for it and it came back negative. I know it can be really tough to find though...

 

Mensah seems very knowledgeable on methylation, but they do look at a lot of things including metals and organic acids. I think at first they focus on the B and D vitamins, and specifically copper, zinc, and histamine results. Also Pyrrole which he tested negative for.

 

 

Just because lyme results are negative or weak doesn't necessarily mean that the coinfections are not involved. DD was also negative for lyme, but highly positive for bartonella.