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OK, so I got my test kits in the mail and am about to collect the spit samples.

 

If I want to use a pseudonym, can I do that? Anyone know?

 

LLM, I recall that you had a specific plan to protect your privacy. Are you going to use your actual names?

 

 

Thanks!

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I used first initials but used my last name, since I was acknowledging that I was the mom (I recall having to click a box attesting that I was consenting to something on behalf of a minor). But you could probably use pseudonyms. My plan is to download all the data and analyze it. Then when I feel I have a good handle on it and am sure I have all the data, I will write the company and tell them to delete the data from their database (you need to put it in writing and they have 30 days to comply). I also checked all the privacy settings (don't share my data with other researchers, don't make my profile public, didn't complete any surveys, etc).

 

There is still the risk that the data will be put into an active research database prior to my writing a letter and 5 years from now when other companies do this and you have better control, I'll regret that some personal data may be out there. But I can't wait 5 yrs or 2 yrs for better privacy options. I want my kids as healthy as possible now. We just sailed through the first January in 4 years where my daughter didn't flip out and go insane before my eyes. I attribute it to using the right dose of methylfolate and other supplements. So I want more concrete data to map out what she should and shouldn't be taking. Tired of throwing spaghetti at the wall to see what sticks, wasting money on stuff that doesn't and having to ride out storms if I give her something that makes things worse. When treating methylation issues, I hear time and again that you need to do things in a certain order. Well, this seems like the best way to find out what mutations we need to worry about and plan accordingly.

 

I suppose working with Yasko may provide a bit more security but even she may be pooling data for her own purposes and it may be impossible to ever get complete privacy once you do one of these tests. But nothing in this journey has been easy or simple and it's required a lot of rolling the dice. There are laws protecting our abilities to be insured regardless of genetics, steps I can take to minimize who can see the data and we'll have to live with the unforeseeable risks. Seemed better than just groping around for answers.

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Oh yes, the latest money-suck :D If you've ever watched any Yasko videos or tried to wade through her methylation diagrams, you know that she tests for several dozen genetic mutations along the methylation pathway. MTHFR is just one of those. But her test is $450. There's another company called 23andMe that tests hundreds of mutations, not just along methylation but for various other issues, that used to charge in the same ballpark but in December, dropped it's cost to $99. It's a spit test. Used to take 2 weeks for results but when they lowered the price, they got swamped and now it's 4-6 weeks for results.

 

The downside of 23andMe is you only get raw data which you then have to upload into an app that converts the data into something you can work with. Then you still have to do all the legwork understanding what it all means. Or you can go to Facebook's MTHFR Support page and the moderator there will charge you $50 to log in as you, look at your data and teach you how to do it. The plus of Yasko's test is that Yasko gives you her interpretation of your data without you having to decipher. But...23andMe tests for a lot more stuff.

 

So it's a coin toss. Which test you run depends on your funds, your ability to dive into the unknown and how masochistic - or broke - you are.

 

There's also privacy concerns, as you're giving your DNA data to a research company. There are laws that prevent insurance companies from denying coverage based on genetic predispositions and pre-existing conditions, and if you pay out of pocket, your insurance company would never know you've even had the test. But there was a story last month in the press about how relatively easy it can be to identify someone by their DNA if you have a few pieces of staring information. So it's not a risk-free thing to do. That was lfran's concern in her post.

 

And to think I felt like a nutty mom when I tried to explain Pandas 4 yrs ago. Ha! Now when I reflect on Pandas, lyme, metals, pyroluria, methylation, detox, stool tests, endoscopes, Pex, IVIG and now genetic testing - that frantic mom almost looks sane compared to the woman I am now.

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OK, so I got my test kits in the mail and am about to collect the spit samples.

 

If I want to use a pseudonym, can I do that? Anyone know?

 

LLM, I recall that you had a specific plan to protect your privacy. Are you going to use your actual names?

 

 

Thanks!

Is this the ame as the Courtagen test?

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No,I think it's quite different. You can google 23andme.com.

OK, so I got my test kits in the mail and am about to collect the spit samples.

 

If I want to use a pseudonym, can I do that? Anyone know?

 

LLM, I recall that you had a specific plan to protect your privacy. Are you going to use your actual names?

 

 

Thanks!

Is this the ame as the Courtagen test?

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