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I tell you, it is confusing for me, too!

Double A1298c - found a homeopathic capsule supplement of BH4- but for this particular deal, it says it boosts the neurutransmitters-

Well, had a recent neurotransmitter test, dd is off the chart high dopamine, AND has very high seratonin.

What the heck to do with that?

My former LLMD was somewhat in shock with the levels- I was asking for low dose clonidine, because things at home are unmangable, to the point that after 3 years of bio -med I'm asking for a pharmacutical, I have tried everything natural- 5-HTP, Kava, on and on, with no results or worse, and clonidine is a mild, no black box warning drug,

this Dr. said okay, give you script to try, but the only other thing I can think of that may help you is

Risperadol! Which is heavy duty, big fat side affect brain effecting drug.

Also did an amino acid profile with this Dr. said methionine is very low- taurine was okay, because I used to supplement that for her.

So see, I have NO idea what to supp.

Also, double A1298c does not produce high homocysteine levels.

All I really know with our specific mutation is to check for high ammonia.

Dd's transmitters are all high.

This Dr. laid out the MTHFR chart to me, the circles that make your head spin-

but....

I am weary of buying more expensive supps on my own, trying for hit or miss, so often a miss.

I think very few Dr.'s really know the great, exact details of MTHFR, especially without the C677T.

 

Or maybe it's just me.

By the way, the clonidine is also a no go with her.

Sorry to be Debbie Downer, at a low spot.

 

It sort of make sense to me that the methionine is low while the dopamine and seratonin are high, especially knowing that the ammonia is a problem. What I have been reading all morning is that you can't really begin to supplement anything until you reduce the toxic loads of ammonia and heavy metals. If I am understanding correctly, it would make sense that if the first step of the cycle is compromised, then everything that follows will be out of whack. Ya know? That still doesn't help you in what to do, but maybe this chart will help?

 

http://webcache.googleusercontent.com/search?q=cache:2oeeUBeravgJ:web.mac.com/autismprotocols/GeckoRanch/Protocol_files/Mutation%2520Summary%2520Group%2520Ver...xls+&cd=5&hl=en&ct=clnk&gl=us&client=firefox-a

 

And this document summarizes things and is a much easier read with no head spinning circle charts:

https://docs.google.com/viewer?a=v&q=cache:0gVAX8zpaksJ:www.vsan.org/rok-az/methylation/Genetic_Analysis_Report_summary_sheet_1.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESh2K_ZWk9zSIHnRD7-sFVolU-pgCAxXJeCKhtHi1lwZWx2ozgVBEfVMmL3sTGYLOnAmlKZq0jshNZjkxGWpnsjqjzgikC7Dp_ZhC2zkVKSHN4hfyEuqVMifdjwtYX-vpN8pNGYB&sig=AHIEtbT3BCjKrOoZfPpb-iM43MLlZvmJXg

Edited by fightingmom
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Gracious, thank you so much for all the links and input... my head is spinning! I'm trying to research this while juggling doc appts and her anxieties & intrusive thoughts (and trying to work on homebound education with her while refinancing the mortgage!), :wacko: but feel like I am only beginning to scratch the surface. It seems we now have a whole new rarely diagnosed and poorly understood condition on which I'll need to become knowledgeable... having a deja vu experience... gosh, wonder why. <_< Sigh...

 

Further, there seems to be a lot of confusing information about the two most commonly tested mutations: C677T and A1298C and what the best treatment is for each one. Is anyone seeing ONE doc who can piece all of this together and give clear recommendations? A geneticist, perhaps?

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Try these, Denise - easy reads and this doctor seems to dedicate himself to MTHFR. He is available for consult and has a facebook page:

 

Info on A1298C mutations and symptoms:

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

 

Potential tests to run:

http://mthfr.net/mthfr-mutation-consider-these-laboratory-tests/2012/01/02/

 

and some other articles he has linked to:

http://mthfr.net/mthfr-research/2012/01/27/

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Okay, apparently the link I am about to post requires you to become a member in order to remove the annoying box that hovers over the text. However, if you keep scrolling, you are able to read the post and it's rather relevant and important info. If you can withstand the annoying box, or would rather become a member of this forum to read it instead, it's worth it.

 

Okay for some reason when I attach the link it takes me to their log in page and not to the post I was referencing. So, I have posted the link again, but put a space between http: and //

 

Try copying and pasting into your browser and deleting the extra space.

 

http: //forum2.aimoo.com/OMGthread2/Scientificness/Biopterin-BH4-1-331082.html

Edited by fightingmom
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Thanks Fighting Mom... I've been reading his site, forwarded to our Ped and I am the last poster on this page: http://mthfr.net/forums/topic/mthfr-and-vaccinesimmunizations-contraindicated/

 

... and I'm trying to gain access to the aimoo forum. Once I registered, it seems to have placed me in a 'can't access' folder. I validated, so might have to wait for someone to approve it. Thanks! :)

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  • 2 months later...

Try these, Denise - easy reads and this doctor seems to dedicate himself to MTHFR. He is available for consult and has a facebook page:

 

Info on A1298C mutations and symptoms:

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

 

Potential tests to run:

http://mthfr.net/mthfr-mutation-consider-these-laboratory-tests/2012/01/02/

 

and some other articles he has linked to:

http://mthfr.net/mthfr-research/2012/01/27/

Any thoughts on this doctor?

 

He mentions A1298C MTHFR disrupts functions of the BH4 cycle. BH4 is critical for 1)breakdown of ammonia 2) assist breakdown of Phenylalanine 3) helps neurotransmitters 4) cofactor to produce Nitrous Oxide.

 

I ran the OAT test on my daughter a year and a half ago and it came back with very high Phenylactic. Phenyllactic acid is a metabolite of phenylalanine. Her ammonia level was checked a year ago with LabCorp - it was normal though - 72 (ref range is 19-87).

 

edit-forgot to mention my daughter and I have the A1298C MTHFR (heter) mutation.

Edited by philamom
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Has anyone ordered any of the tests this doctor mentions? I'm assuming most are not covered by insurance? thx

 

No, but am going to look thru this list tonight. DD sees our LLMD on Tuesday and she's having GERD issues and allergy issues again. So I'm kinda stuck on which way to turn (don't think infection is an issue). I've been looking for test ideas and this list is a good place to start. Am thinking we're missing a piece.

 

For your DD, I think some of the tests you could skip - e.g. the biopterin - since you know chronic infection is a component. Have you tested for metals yet?

 

I think I'll print out this list and run it by our LLMD. I'll let you know if the conversation goes anywhere.

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Has anyone ordered any of the tests this doctor mentions? I'm assuming most are not covered by insurance? thx

 

No, but am going to look thru this list tonight. DD sees our LLMD on Tuesday and she's having GERD issues and allergy issues again. So I'm kinda stuck on which way to turn (don't think infection is an issue). I've been looking for test ideas and this list is a good place to start. Am thinking we're missing a piece.

 

For your DD, I think some of the tests you could skip - e.g. the biopterin - since you know chronic infection is a component. Have you tested for metals yet?

 

I think I'll print out this list and run it by our LLMD. I'll let you know if the conversation goes anywhere.

No, I haven't tested for metals. Next on my list is KPU urine test. Never got around to it. Good luck with your appt.

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