• 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 (FM), 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.

How do people here feel about the MTHFR testing from Spectracell - re: MTHFR.net?

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
I was looking into getting the Vitamin Diagnostics methylation panel & it will cost me about $1000 to go to a doctor, get the test, have it interpreted, etc. The doctor charges about $400 an hour... $150 seems very reasonable but is it any good?

For just a bit more than $150.00, you get info about MTHFR mutations and almost a million more SNPs if you go the 23andme.com route. As such, I consider the Spectracell test to be way overpriced.

You may also want to consider a cheaper but somewhat less informative Methylation Profile from Doctor's Data.
 
Messages
2,565
Location
US
23andme might have a sale soon. They had one last year around April 11th because DNA Day is April 15th. Last year you could pay nothing upfront and commit to $9/mo for 12 months. That is a low price for what you get. It's nearly half price.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Only $150.... http://mthfr.net/mthfr-testing-mthfr-test-kit/2012/01/25/

I was looking into getting the Vitamin Diagnostics methylation panel & it will cost me about $1000 to go to a doctor, get the test, have it interpreted, etc. The doctor charges about $400 an hour... $150 seems very reasonable but is it any good?

You could also get a less expensive doctor to order the Methylation Panel from Health Diagnostics. A chiropractor can also order it and probably a nurse practitioner. Dr. Audhya (who consults/works with the lab and is a biochemist) will help whatever health practitioner who orders the test, to interpret it.

Best,
Sushi
 
Messages
52
Location
NJ, USA
Thanks Sushi. Sounds like a good idea. I will seek further practitioners. The one I called was recommended by Vitamin Diagnostics since he's local.

The 23andme concept is interesting but I'm somewhat concerned about what they do with the DNA. There's all kinds of stuff about 3rd parties & R&D in their privacy statement... I didn't read the whole thing but it is somethig I'm concerned about.

Any thoughts about the quality of the Vitamin Diagnostics test vs. the genetic one? I'm new at all of this. Are there advantages of a genetic test over the methylation panel or vise versa?

I have had a pretty big reaction from doing the simplified protocol - so, I already know this is something I have to work on. Will getting one or both of these tests actually help me? I can just keep working on it with the SMP. It seems like I'm detoxing - What(?) - I'm not sure. My feeling is that it could be metals or other toxins. Would it be more helpful to find out the precise toxins rather than the methylation profile? Money is an issue - I'm trying to do the best I can without spending too much.

Do people generally do an over all detox or concentrate on specific toxins. I'm not sure if detoxing PCBs or pesticides is different than aluminum or mercury... It's probably a good idea to just try to detox everything. So, is testing really important? I don't really know enough to get an overall picture.

Thanks folks!
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I am also interested in knowing the quality and reliability of the methylation cycle test results from Health Diagnostics (how do we know this lab is legit and results meaningful? sorry for being sceptical, I dont mind spending $ to get actionable info and a baseline to measure progress but what gives you confidence in their test?)

update1: forgive my nubishness.. I am reading more and I can see people have exprience w/this lab.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I am also interested in knowing the quality and reliability of the methylation cycle test results from Health Diagnostics (how do we know this lab is legit and results meaningful? sorry for being sceptical, I dont mind spending $ to get actionable info and a baseline to measure progress but what gives you confidence in their test?)

update1: forgive my nubishness.. I am reading more and I can see people have exprience w/this lab.

Hi Roxie,

This is a well known, accredited lab that is a branch of a lab in the Netherlands. http://www.europeanlaboratory.nl/ Dr. Ayudhya (who will help interpret the tests for doctors and who used to be the lab director) is a respected biochemist who teaches (or at least used to) at Columbia, if my memory serves me.

My doctor (in Europe) and many others use this lab because it offers specialty testing that is not available from other labs. They are not always as organized at the front desk as patients would like, but they have a good reputation for the accuracy of their tests.

I have had 3 doctors order tests from them and the results all made sense with my condition and symptoms. I have also had two methylation panels run with them (one before treatment and one after a year) and the results were very helpful in showing progress. It is too bad that most insurance won't pick up the bill though--but they don't for many specialty tests.

Best,
Sushi
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Thank you so much. I am going to ask my Dr. request the test so we can see where I am and if my results give more support to me having ME/CFS. Also have a baseline as you did to compare once figure out what to do.

Hi Roxie,

This is a well known, accredited lab that is a branch of a lab in the Netherlands. http://www.europeanlaboratory.nl/ Dr. Ayudhya (who will help interpret the tests for doctors and who used to be the lab director) is a respected biochemist who teaches (or at least used to) at Columbia, if my memory serves me.

My doctor (in Europe) and many others use this lab because it offers specialty testing that is not available from other labs. They are not always as organized at the front desk as patients would like, but they have a good reputation for the accuracy of their tests.

I have had 3 doctors order tests from them and the results all made sense with my condition and symptoms. I have also had two methylation panels run with them (one before treatment and one after a year) and the results were very helpful in showing progress. It is too bad that most insurance won't pick up the bill though--but they don't for many specialty tests.

Best,
Sushi
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
I did the Spectracell MTHFR test through mthfr.net last month. Treefrog asked if it was any good. I interpret good to mean: does Spectracell accurately test the MTHFR gene? I don't know how anyone could answer that, unless they ran comparisons with another lab's results.

I was diagnosed as homo A1298C by SpectraCell. I don't have ME/CFS, but I think MTHFR is worth testing for, because I feel much better after starting Freddd's recommended supplements on the Active B Protocol.

I paid $150 through mthfr.net for a test of the two common MTHFR variants, C677T and A1298C. My test result merely said whether I was negative, heterozygous, or homozygous for each of the variants. Dr. Ben of mthfr.net provided no further interpretation. In addition to the $150 for the test, I had to drive 100 miles roundtrip to get my blood drawn, and pay $9 for the blood draw. It took 18 days for me to get my test result once I FedExed my sample in.

I agree with nanonug, that considering the almost million SNPs that 23andME tests for, and the ease and cheapness of a saliva collection rather than the blood draw that SpectraCell requires, that 23andME is by far the better value.