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Reliable Labs for Testing Common SNPs

Messages
86
Hello,

I'm advocating for my daughter who has CFS, FM, POTs and IBS. She was tested for 2 genetic variations of MTHFR and was found to be compound heterozygous for both A1298C and C677T. A traditional, hospital testing lab performed this test. Since she hasn't responded to some methylfolate that a practitioner has suggested, I thought it would make sense for her to get other mutations tested such as SOUX, COMT, etc.

My question is what reliable labs are there that we could get these other potential gene variants tested? I have seen various researchers recommend 23andme, but I have also seen other people commenting that the recommendations that 23andme provides can be contradictory or too generic to be useful. I've see other posts that have said that the value in the $99 gene test is not the recommendations you get from 23andme, but the actual analytic results so you know if you are positive for COMT, etc.

I have some other family members who are very skeptical about "what you get" for a test that is only $99 dollars. They have also seen some dubious posts about places like 23andme, so I would hope that there other forum members are at least aware of some endorsements from recognized CFS docs. This would end some legitimacy to others' recommendations.

Thank you very much in advance for your feedback.

Scotty81
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@Scotty81 ,

What you get from 23andMe now is data on about 760,000 points on your DNA. They claim it is 97% to 99% accurate, and as their method improves, you can download new versions of your data. What you do with it is up to you.

In November of last year, the FDA decided that 23andMe could not publish the health results until they figure out whether people can really make sense of them. So, unless the FDA has allowed them to resume that, you only get your raw data and your ancestry results. Apparently it's a lot to ask of the general public to determine the significance of your risk of celiac disease being 0.10% compared to the general population's risk being 0.24%. And in truth, at least the American public is not generally well versed in statistics.

So, the significance of most mutations is not understood, but there are a handful that code for genes with unique functions where the implications generally are understood; the two that your daughter was tested for are among them. If she has not responded to the methylfolate, perhaps she was not on a high enough dose or on her dose for long enough...and perhaps there are other mutations at work. When and if you find that out, her combination of mutations also may not be well understood, but it may point you in directions you may want to explore. Several choices are available (yasko, amri, mthfr.com, genetic genie, nutrahacker) to help you find interesting mutations, but each of them has an error rate, too. I don't know what that rate is, and I believe some copy from each other (because you wouldn't make the same CBS mistake if you read the research for yourself). My choice has always been to know, and then try to figure out what, if anything, it might mean.

Remember that there are other causes for illness besides genetics. It seems like a lot of people here have multiple viral infections. Lots have an ineffective assortment of bacteria in their gut. Some have immune system malfunctions, for whatever reason. Genetics is good to know because it will underlie whatever else is going on and it won't change. Personally, I think 23andMe is a bargain and at least as reliable as most lab tests. But don't stop there in searching for a solution. And best wishes for you and for your daughter's health.

Crit
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
@Scotty81

I have been tested for the MTHFR gene using Amy Yasko's set up( don't recommend, WAY too much money), 23andMe, and Quest. All three of them synced up and said the exact same thing. 23andMe and Yasko test for the same things (as far as methylation goes) and every single one came back the same on both of those tests.

I, personally, would recommend 23andMe as the best option in terms of both cost and quality.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
,

What you get from 23andMe now is data on about 760,000 points on your DNA. They claim it is 97% to 99% accurate, and as their method improves, you can download new versions of your data. What you do with it is up to you.

@Scotty81 Generally any test a person can get from a dr has a failure rate of some kind, look at many of the current medical tests eg B12 tests, very unrealiable so many with deficiency get told they are fine!. . I personally think the 23andME accurate rate is good, if an issue is there you can be almost sure you have it (if its something major you know you can follow up further testing with your doctor).

I dont think one can beat the value of 23andME. I know just a simple paturnity gene test was many hundreds of dollars so you can compare that with 23andME gives you the raw data for thousands of gene things for $99 (and you find out all your relations while you are at it if you wanted as a bonus!). A quick run of that 23andME raw data into something like geneticgenic (which is free) gives you a fairly good methylation panel with a fairly good report, and also a toxin panel. You can take that raw data and for $20 run it into another online program and find and out aboutt heaps of other mutations you have eg thyriod, immune mutations etc etc.

I havent noticed any errors in my 23andME stuff of yet eg my results matched with stuff which had previously been found.