• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Cheapest way to test and treat methylation for a family - Rich

soulfeast

Senior Member
Messages
420
Location
Virginia, US
Rich, if you can catch this..

I have a family of 3 of us so far with methylation issues. Mold illness, candida and heavy metals. Different manifestaitons with different people:

Daughter (14):
recurring thrush on tongue
OAT test indicating bad candida infection
OAT not indicating b12 of folate issues
Yasko's panel indicating:
MTR, MTTR, MTHFr C677 hetero, NOS homozygous, ace deletion, BHMT 8 homozygous, COMT hetero, CBS A360A hetero, SHMHT hetero, MAO-A homozygous,
OAt indicating no mitochondrial issues and no oxidative stress or little..
(major depression issues, POTS, joints go out)
Shoemaker multisuseptable 11-3-52b and low MSH gene 1-5 but biotoxin markers last year in mold house (limited testing) showed no elevated c4a rather elevated c3a (only by shoemaker measure)
passes visual contrast test (shoemaker)
Red blood cell size normal

I give her no extra b12 other than in B complex (Body Bio and Douglas labs which has metafolin). She also takes 800mcg metafolin. No folinic. Fredd's info has me very confused and frustrated on this.. I would love to know when this is an issue and if there is a test that can settle it.. and what role folinic plays and if its does block 5 methyl THF from cells.. like FA does.. do cells take in any form then they close up to other forms and either convert what they have or not? What are the consequences of not supplementing folinic?

Son (11):
Passes out with blood testing so limited:
large red blood cells
OAT reveals folate and b12 issues though MMA in range
no oxidative stress or mito damage via OAT
Low amino acids..
We have yet to run a yasko genomic panel on my son.
Both pos for KPU
He is has sinus issues (I had surgery to remove many fungal balls) and unidentified mold was found in stool testing. little to no healthy bacteria.. (not sure how accurate that testing is)



both kids low B6 and adrenal problems as per OAT, low vit C, both Low glutathione.. (though methylation markers seem fine for my daughter)

I was advised to add in whey protein for my son and digestive enzymes with betaine and glut lipo, B6, B5 and C for my daughter along with an antifungal "parade" or rotating meds, heavy metal challenge with suppositories

We are running out of money..

I am thinking to concentrate on KPU (periodic urine and hair analysis), methylation (? tests), candida (OAT test?), metals (essential and toxic elements periodically).. out of mold contaimnated house and practical avoidance.

Long story, sorry..

TO the point.. how to cheaply monitor and address methylation? How valuable and accurate do you think OAT is and checking red blood cell size? Given my son's panic issues with blood draws, I am trying to avoid those as well. There is the Doctor's Data methylation panel and the Health Diagnostics. I know you
prefer the latter.. maybe every 6 months?

this seems like a financial nightmare at times..

Thank you,

Robin
 

chilove

Senior Member
Messages
365
Bless you Robin and I can't help as I'm new to all this but this is a great thread because we all need to figure out how to do this affordably.

Best to you!
 

Rosebud Dairy

Senior Member
Messages
167
Dear Robin,

Oh, how our stories are so similar!!!

I would say for your daughter, that minerals would be least expensive, esp. if you are already taking them. I'd bet she has low MSH, though Shoemaker doesn't track that like he used to.

I don't fully understand all the biochemical stuff behind folinic, but if it can be gotten in diet, and she doesn't show genetics against it, go with your gut............you just have to get quiet enough and calm enough to hear it............After mold and other illness that is hard.

My daughter is showing similar issues, though I haven't had Yasko testing done on any of us so far.......but am considering starting with me.........when I feel more ready.

If we take amino acid chelates of minerals, does that help us with chelation of heavy metals? So, I figure if I take the potassium and magnesium that I need anyway (but in amino acid chelate form), then maybe it is helping with metal issues, if I have them? Just haven't studied this area like I have folate, B-12, and Shoemaker.

I do have persistently low MSH, though my VCS is and always has been fine. My kids had a poor VCS last I checked, but it has been a while. My last ERMI was a zero, and spore counts were low. I did treat for positive MARCONS, but you could POSSIBLY do that with colloidal silver nasal spray -- cheaper than the BEG spray compounded by speciality pharmacy. Of course, you can only do what the patient will be compliant with, so good luck with that part, too! My low MSH hasn't felt so bad now that I am working on methylation/neuropathy -- which I am hitting pretty hard these days. Hyperbaric Oxygen therapy seems to help the neuropathy, also.