Not over: part 2

[JAG10]

All that showed up on Quest labs was elevated ASO and anti-DNase B, but....

 

Neurotransmitter testing via the neuro adrenal basic panel:

GABA- low

Glutamate- high

Norepinephrine-low

 

Cortisol should start high and end low by evening. Her graph wasn't steep enough in that she started too low and ended a little high. DHEA high too

 

OAT:

Yeast all looked great except arabinose was a little high

 

Only things out of range were neuro transmitters confirming above testing and her Vitamin C was low.

Her Dopamine to VMA (norepinephrine/epinephrine) ratio was high because her VMA was too low. And her quinolinic/5-HIAA ratio was way high; no idea what this is....

 

So low Vitamin C (not supplementing currently) and some mucked up neurotransmitters don't tell me much. Her Malabsorption and Bacterial Markers were all perfect, so I'm guessing that points away from any hidden infection.

 

Any thoughts on this info? We see Dr. O on 8/13

[Mayzoo]

Many similarities in our kiddos lab work. Here are some of my kiddos and what we are doing:

 

OATS

 

Yeast

 

High Arabinose...added Sacc B and kefir to her diet.

 

A few slightly high bacteria markers. Added Kefir.

 

Vitamins:

 

Low vitamin C. Added 500mg Vitamin C in evening, and vit C/echinacea/zinc chews in the am

Low B2. Added Co-Q-10, 50mg B-2, and a super B vitamin.

 

 

Neurotransmitter test:

 

High:

GABA

Glutamate

Dopamine

Norepinephrine

 

Low:

Taurine

PEA

 

Added Taurine 375mg, added 5-HTP in hopes to lower Norepinephrine, added L-Phenylalamine 250mg to raise PEA. We are going kinda slow, and I am adding the Phenylalamine tomorrow. It is the last one to add based on test results, and all appears to be going pretty well so far.

 

Our Immuno said the GABA/Glutamate ratio you are dealing with is far more common. He said our kiddo is "only one of a few" of his patients whose ratio is about right (even though the numbers are too high).

 

It has not apparently been long enough to really gauge progress for our kiddo on the neurotransmitters. Apparently they want you to treat for about 3-4 months then retest for progress.

[JAG10]

Did you have any discrepancy between the two tests? Her serotonin was minuscule on the OAT, but within range on the neurotransmitter test. NAC and coQ10 were recommended on the neurotransmitter test but in range on the OAT. I guess Dr. O will make sense of it all.

[Mayzoo]

Kiddos OAT shows her Serotonin at .78 with a range of >7.7 so it does not range down to "low." Her neuro test showed her serotonin to be about mid range. I think both the OAT and the neurotrans test recommended NAC, but kiddo has a CBS mutation so we are holding off on the NAC for now. I tried it myself for another reason, and a low dose caused me to become a bit aggressive/argumentative, but I have not been gene tested either. The CO-Q-10 was recommended on the OAT, but I do not believe it was recommended on the neurortrans test.

[lfran]

What is this neurotransmitter test and how do I order it?

[Mayzoo]

What is this neurotransmitter test and how do I order it?

 

This is the one we had done. You ask your doctor to get a kit from them (if they do not already have one). Then the doc gives you the kit (urine test) and you mail in to them. I think it was $255.00, but we did so many I may have the prices mixed up.

 

http://www.pharmasan.com/testing.php?CatID=1&CatName=Neurotransmitters

 

The test we did gave parameters for:

 

GABA

Glutamate

Glycine

Serotonin

Norepinephrine

Dopamine

Taurine

PEA

Histamine

Epinephrine

[SSS]

The vitamin C nearly always shows low on everyone- it is a water soluble vitamin that passes quickly through the body-

nurse from Great Plains told me that once.

 

Okay - this next bit, almost embarrassed to suggest, you are such a smart old timer, but when you keep saying the strep titers are so high, and keep staying high:

You've had every member of your family checked, right?

And do you remember the gal who came on here and said her DOG was carrying strep?

Little .02 cents.

[tpotter]

My DS's strep levels were high, and stayed that way for about 9 years, and lots of tx, including PEX and IVIG. We were all tested, and the dog was also treated. Looks like the levels just came down this year...only thing we did differently was ART. Just wanted to mention that.

[JAG10]

The vitamin C nearly always shows low on everyone- it is a water soluble vitamin that passes quickly through the body-

nurse from Great Plains told me that once.

Okay - this next bit, almost embarrassed to suggest, you are such a smart old timer, but when you keep saying the strep titers are so high, and keep staying high:

You've had every member of your family checked, right?

And do you remember the gal who came on here and said her DOG was carrying strep?

Little .02 cents.

That's good to know about the Vit C. Hers actually measured 0.0.

 

We have all been tested. She shares a bedroom with her sister, who is mild pandas. Little sister's titers fall to well within the normal range, but dd13 do not. Both girls have had their T & A removed. Plus the bacterial markers were all stellar. Her titers will rise with infection. Her baseline is elevated, but it's not "normal". I will report back next week if Dr. O relates the higher titers with the wonky neurotransmitter levels.

[JAG10]

My DS's strep levels were high, and stayed that way for about 9 years, and lots of tx, including PEX and IVIG. We were all tested, and the dog was also treated. Looks like the levels just came down this year...only thing we did differently was ART. Just wanted to mention that.

What did the ART indicate and what did you do differently that you hadn't done before? There were other infections also, correct? Thanks tpot

[3boysmom]

I can't remember, does she have mycoP as well? Our doctor believes that myco can skew the titers of other infections. Can't remember exactly how he explained it, but myco can effect coinfections.

[Dedee]

The first thing that jumps out at me is the low GABA and high Glutamate. This is a big issue for many PANS children and we have seen good results by working on getting this back in balance with our daughter. The following is an explanation on GABA / Glutamate balance and it's importance. Sorry it is so long. I did a cut and paste and didn't want to leave out any helpful parts:

 

"Glutamate is the main excitatory neurotransmitter in the body. It is essential for learning and short and long-term memory. Glutamate is also the precursor to our primary inhibitory or calming neurotransmitter, GABA. GABA damps the propagation of sounds so that a distinction can be made between the onset of sound and a background noise. Many other physiologic processes require a balance between glutamate and GABA, which is usually easy to achieve as glutamate, glutamine, alpha-ketoglutarate, and GABA can be interconverted via the enzymes depicted above.

Genomic defects, viral illness, and heavy metals will compromise this balance, leading to excess glutamate, insufficient GABA, excitotoxicity, and eventual neuron loss. Viral infection (individuals with Methyl Cycle defects cannot defend well against viral infection) can lead to antibodies against the vitamin B6 dependent enzyme glutamate decarboxylase (GAD), blocking GABA production (this is felt to occur in the pancreas in kids with juvenile onset diabetes). Aluminum poisons this enzyme as well. Excessive alpha-ketoglutarate generated due to the CBS up regulation can be converted into glutamate, but in the presence of lead and aluminum, the glutamate so created cannot be converted into GABA, glutamine, or back to alpha-ketoglutarate. The result is glutamate-GABA imbalance, agitated behavior, and eventually nerve loss.

Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation. Glutamate excess does the same and also wastes glutathione and increases levels of TNF-alpha, an inflammatory mediator that can produce heart cell dysfunction and gut inflammation.

You can restore glutamate-GABA balance by:

1. Addressing CBS up regulation/BHMT down regulations to decrease alpha-ketoglutarate production.

2. Decreasing intake of food precursors of glutamate

3. Supplementing with GABA

4. Copper inhibits conversion of glutamate to GABA by glutamate decarboxylase so avoid copper excess, or better stated, an imbalance between copper and zinc.

5. Calcium is involved in glutamate toxicity, so supplement with magnesium to keep calcium in check."

 

Hope this was helpful - Dedee

Edited August 7, 2013 by Dedee

[peglem]

The first thing that jumps out at me is the low GABA and high Glutamate. This is a big issue for many PANS children and we have seen good results by working on getting this back in balance with our daughter. The following is an explanation on GABA / Glutamate balance and it's importance. Sorry it is so long. I did a cut and paste and didn't want to leave out any helpful parts:

 

"Glutamate is the main excitatory neurotransmitter in the body. It is essential for learning and short and long-term memory. Glutamate is also the precursor to our primary inhibitory or calming neurotransmitter, GABA. GABA damps the propagation of sounds so that a distinction can be made between the onset of sound and a background noise. Many other physiologic processes require a balance between glutamate and GABA, which is usually easy to achieve as glutamate, glutamine, alpha-ketoglutarate, and GABA can be interconverted via the enzymes depicted above.

Genomic defects, viral illness, and heavy metals will compromise this balance, leading to excess glutamate, insufficient GABA, excitotoxicity, and eventual neuron loss. Viral infection (individuals with Methyl Cycle defects cannot defend well against viral infection) can lead to antibodies against the vitamin B6 dependent enzyme glutamate decarboxylase (GAD), blocking GABA production (this is felt to occur in the pancreas in kids with juvenile onset diabetes). Aluminum poisons this enzyme as well. Excessive alpha-ketoglutarate generated due to the CBS up regulation can be converted into glutamate, but in the presence of lead and aluminum, the glutamate so created cannot be converted into GABA, glutamine, or back to alpha-ketoglutarate. The result is glutamate-GABA imbalance, agitated behavior, and eventually nerve loss.

Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation. Glutamate excess does the same and also wastes glutathione and increases levels of TNF-alpha, an inflammatory mediator that can produce heart cell dysfunction and gut inflammation.

You can restore glutamate-GABA balance by:

1. Addressing CBS up regulation/BHMT down regulations to decrease alpha-ketoglutarate production.

2. Decreasing intake of food precursors of glutamate

3. Supplementing with GABA

4. Copper inhibits conversion of glutamate to GABA by glutamate decarboxylase so avoid copper excess, or better stated, an imbalance between copper and zinc.

5. Calcium is involved in glutamate toxicity, so supplement with magnesium to keep calcium in check."

 

Hope this was helpful - Dedee

Well, it was helpful to me! Thanks.

[JAG10]

That was helpful for me, although a little over my head. Nancy knows a lot about this balance too i believe. I know Dr. O will address this. She's been taking zinc. The testing came with physician recommendations:

 

Week 1 (4-8 capsules)

1) Calm G- NAC, CoQ, l-theanine.

2) Kavinace- taurine, 4-amino-3-phenlybutyric acid

 

Week 2 add for total of (6-14 capsules)

1) AdreCor- rhodiola rosea extract, N-acetyltyrosine, L-methionine, Vit B and C

 

Optional (2-4 more capsules)

Avipaxin- Huperzine A, alpha- GPC, acetyl-L-carnitine HCL

 

Any input on her cortisol too low in the morning and a little too high in the evening? So it should start high and slope ending low; her hill isn't steep enough on the graph. And DHEA is too high.

[JAG10]

Her myco-p is in check.