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Treating methylation, triggered autoimmune nerve damage..how to proceed? (SNPs inside)

Messages
65
Intro and TLDR:

I would really appreciate any help. My brainfog is so bad, I can't function at all. My intelligence is draining and my ability to do simple tasks is fading.


Although Mfolate + MB12 etc helped me initially with dopamine, It sparked horrible inflammation and autoimmune nerve issues (twitching, tingling etc) . So I thought it best to tackle methylation later.


My plan was to lower inflammation and toxin/pathogen burden by starting with GI, parasites and yeast, move to broad spectrum anti pathogen like banderol etc while doing detox…then get on an anti inflammatory and start methylation. However, I noticed yasko discusses treating SHMT first in order to alleviate gut issues, but the treatment involves folinic acid.
Will this also whip up inflammation and exacerbate my autoimmune issues like mfolate, mb12 etc?

What about taking HB12 to help with sulfur and NO without taking mfolate?

Why did methylation treatment exacerbate my autoimmune disease?

How can I avert that and what is the best way to proceed with methylation side of things?

Any insights on my other SNPs?



Thanks!

In depth Background, details and SNPs:



SNPS:



A link to the full MTHFR support report with immune, detox, methylation etc is here:https://docs.google.com/spreadsheet/pub?key=0Ajm4ylAWb_FkdGl0aTEtN0pMX2NvdGVmMUtRWmx1Vmc&output=html


Just a list of my methylation SNPs is below:

Heterozygous risk:

ACE Del16

AHCY-01

AHCY-02

AHCY-19

BHMT-04

BHMT-08

CBS A13637G

CBS C699T

MTHFD1 C105T

MTHFD1L

MTR A2756G

MTRR rs10520873

MTRR rs162049

MTRR rs3776467

PEMT

SHMT1 C1420T

SHMT1

SHMT2

TCN2 C766G

TYMS

VDR Taq

A whole bunch of GAD

Homozygous Risk:

COMT H62H

COMT V158M

DHFR

MTHFR C677T

MTHFS

NOS2

NOS3

NOS3

NOS3 T786C

PEMT

SLC19A1

SLC19A1

VDR Bsm

Urine AA:

On a 3 year old 24 hour urine AA my Taurine was 1700 on a 195 - 1400 ref range and my ammonia was 54 on a 10-50 ref range. Cysteine, gaba and sarcosin also high. Also Glutamine/glutamate ratio was high, but the ref range only had a low number( 9 and mine was 26).


Current symptoms: I’m 24 I have some unspecified autoimmune disease resulting in periods of neuropathy and fasciculation’s that get better and worse, but in general trending towards worse. Also affects muscle strength. Cognitive functioning as well, both from a memory perspective, but also from an energy/mitochondria perspective because if I think too much or try to use my PFC, my brain basically shuts down and I get foggy and spacy , if I try to push through, it gets worse. A bit Better if I eat or have some coconut oil. Started to get derealization.

Also get little non blanching dots on my skin.

Doctors can’t put it in a b

Definitely feel, sound and am getting dumber the longer this goes on :/



History of illness: I was born with some delayed speech and non verbal/spatial learning issues. I;v always had executive functioning and anhedonia/low dopamine pfc problems, . Never really been able to put on weight, but its getting worse with the autoimmune stuff.


Trigger and patterns: Although I have always had issues, the worse fatigue and the autoimmune neuropathy symptoms started 2 years ago when I tried to fix methylation defects. Taking 5 mthf and ramping up methylation cycle was helpful by increasing dopamine, helping social anxiety and executive functioning , but set off inflammation as it often does with people with autoimmune disease.

Response to supplements: Many supplements trigger exacerbations of my autoimmune issues. This includes supplements that help in other ways such as zinc. Even anti inflammatories such as boswelia, Kalawalla and fish oil either make me sick by triggering infection , or increase the neuropathy and hair loss (perhaps they increase pathogen proliferation or reduce the wrong kind of cytokines?). Takes me months to recover partially mentally and physically from a flare Did not do well increasing vit d intake.

PQQ and d-ribose helps with mental energy and PFC functioning


Magnesium helps with anxiety, but I think I am sensitive to it. Also on oregano for general anti pathogen.

Progesterone and adrenal cortex extract also help.


Other more upstream issues are methylation snps, gut issues (unknown yeast and unknown parasite, but flora ok), autoimmune tendency (mom has sjogren, grandmother behchets) , possibly HHV6 and mercury heavy metal poisoning (borderline high on hair test). May have other intracelluluar pathogen nothing confirmed, vit d 25 oh and 1.25 ratio out of whack, low vit d.


I have mild classical ehllers danlos syndrome and my brain is very sensitive to blows or any quick turns of the neck.

I have constant low level congestion in right sinus, get frequent throat (strep + and - ) and sinus infections. Had tonsils out for this, barely helped.


Labs show borderline low white count that I have had forever, Positive ANA 1/125 with speckled pattern, low vit d3 , high-ish urine ammonia, the gut issues I mentioned (stool test), zinc and niacin deficiency on spectracel, tanked adrenals. No overt lesions on brain MRI, borderline high RT3.



Lyme Igenx is not overtly positive. Doctor said it was negative.


Thanks!
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@lampkld2 ,
I looked at your MTHFR support printout, and it shows you -/- for MTHFR C677T. If that's right, your biggest need in the methylation cycle will be B12, not methylfolate. You also have BHMT-08 +/+, so TMG may help you with the secondary pathway. I don't know how this plays into your bigger picture, though. I think there are other pathways around the SHMT defect - not sure because I haven't mapped them all out. There's a lot more going on with you, I know that I don't know even 10% of it. I'd hate to recommend anything because your situation seems so complex.

good luck and good health to you!
 
Messages
65
Hi Critterina,

Thanks to your feedback, I just realized that the spreadsheet I uploaded was had many errors. The url now links to the correct sheet.

I am indeed homozygous for C677t.

I hear that about the complexity, It feels like everything is a catch 22!

Thanks for the wishes and likewise to you
 

xrunner

Senior Member
Messages
843
Location
Surrey
@lampkld2
I don't have the answers you may be expecting just a few ideas based on my own experience.
- If the methylation treatment has made you unwell it suggests it's not working at worst it may make you worse (personally I would not try any methylation treatment other than Rich's protocol)
- If you have sensitivities to supplements, it would probably be safer not to take any of those (I had sensitivities and persisting just led me to MCS).
- Autoimmunity and neuropathy may suggest intracellular infections such as Lyme disease, Cpn which in chronic stages can cause autoimmune reactions. Nerve twitching, derealization, and if you have red spots on skin, then Bartonella, a coinfection in Lyme disease, is a possibility (check out Burrascano's Lyme guidelines).
Therefore you may want to consider seeing an experienced and proven LLMD.
- If your gut issues don't improve on probiotics, I'd look into parasites and/or mercury. A simple, effective and safe remedy against many parasites is papaya seeds.
- If you have mercury in your system, I'd look into the Cutler protocol but would not do anything until infection-related symptoms are improved.
- If you have any of the above, focusing on your polymorphisms won't help. I tried that kind of treatment years ago and it was a dead end.
Hope you get better.