Anyone participating in the Tapestry DNA Sequencing Research?

Posted by dazlin @dazlin, Oct 19, 2020

if you have volunteered or declined to participate, I'd like to here your thoughts. I was on the fence, very undecided, yet I decided to go ahead to do it. I have a few low grade health problems im dealing with , and really dont want to hear anymore. That said, I realize this testing may be of great value at some point. Also its strictly voluntary and can be declined at anytime. I sent mine in today.
Whats your thoughts??

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

Hello, yes I did my sample today and it will be going out in tomorrow's mail

REPLY

The Tapestry Study is primarily focused on hereditary cancers and heart disease I believe. I personally was not impressed with the results I received back from Helix (the company that does the actual sequencing). I have had my genome also sequenced by another company and got far more comprehensive and in-depth results which explained several unexplained health issues I had. They found I had a mutation which affected tacrolimus metabolism which explained the convulsions I had when taking it post surgery. The other company also found I have a mutation in folate metabolism which is easily treated by taking methylated B vitamins. I never would have known this if I had not had my entire genome sequenced by that company. It costs me $500 but was worth it in my opinion.

REPLY
@gratefulbob

The Tapestry Study is primarily focused on hereditary cancers and heart disease I believe. I personally was not impressed with the results I received back from Helix (the company that does the actual sequencing). I have had my genome also sequenced by another company and got far more comprehensive and in-depth results which explained several unexplained health issues I had. They found I had a mutation which affected tacrolimus metabolism which explained the convulsions I had when taking it post surgery. The other company also found I have a mutation in folate metabolism which is easily treated by taking methylated B vitamins. I never would have known this if I had not had my entire genome sequenced by that company. It costs me $500 but was worth it in my opinion.

Jump to this post

It would be helpful to know the names and prices of the companies you liked, please.
BTW, I didn’t find the Tapestry Helix study very helpful either.

Regarding the folate metabolism, I have MTHFR homozygous for C677T. Regular folic acid did not help. What brought my folate to normal level was Nature’s Truth brand L-methylfolate. Please notice that “L”in the name before the methylfolate. It is important. I found this at the largest Rite-Aid store in my neighborhood. Taking only three capsules weekly after breakfast is adequate for me. Hope this helps!

REPLY
@zebragal

Hello, yes I did my sample today and it will be going out in tomorrow's mail

Jump to this post

Hi @zebragal, can I help connect you with other members or topics of interest?

REPLY
@raye

It would be helpful to know the names and prices of the companies you liked, please.
BTW, I didn’t find the Tapestry Helix study very helpful either.

Regarding the folate metabolism, I have MTHFR homozygous for C677T. Regular folic acid did not help. What brought my folate to normal level was Nature’s Truth brand L-methylfolate. Please notice that “L”in the name before the methylfolate. It is important. I found this at the largest Rite-Aid store in my neighborhood. Taking only three capsules weekly after breakfast is adequate for me. Hope this helps!

Jump to this post

I used sequencing.com and was pleasantly surprised by how in depth the results are.
Note they attempt to make money by their data analysis subscription and offering the initial sequencing service and data analysis fairly inexpensive. IMHO, the initial data analysis is sufficient but you should download the FastQ, BAM and VCF files for your own records and future analysis. One feature that I like is that you can upload other data from Ancestry, Heritage etc. to compare the results. Helix has never given me my own raw data despite numerous requests. This is a violation of HIPAA regulations and has really made me suspect of their data analysis.

REPLY

I was happy with my results. What i want to know is where is the website? where did it go??? I can't find it anymore. Also,how do you start a comment on here? it's not in the instructions.

REPLY

I want to log back in and view my results because i can't find my copies, but now the site has either changed or moved and no one is answering the phone at the Tapestry office. What is the site exactly? I logged in the Mayo Clinic site but it's not there and I checked a hundred other places but no. I called Helix and they weren't very helpful either. I tried logging in with my password that i used before and it told me it isn't valid. Really? because it WAS valid. What is going on? Why can't i access my information? I asked for a new link to reset my password and have not received it. So i am stuck. It should not be this hard.

REPLY
@micebyliz

I want to log back in and view my results because i can't find my copies, but now the site has either changed or moved and no one is answering the phone at the Tapestry office. What is the site exactly? I logged in the Mayo Clinic site but it's not there and I checked a hundred other places but no. I called Helix and they weren't very helpful either. I tried logging in with my password that i used before and it told me it isn't valid. Really? because it WAS valid. What is going on? Why can't i access my information? I asked for a new link to reset my password and have not received it. So i am stuck. It should not be this hard.

Jump to this post

@micebyliz, if you are able to post a comment like you have here, you are already signed in to Mayo Clinic Connect. Tapestry and Helix are different websites. Here is the link https://www.helix.com/

If you are having issues with Mayo Clinic Connect, please contact us using this form: https://connect.mayoclinic.org/help-center/#get-technical-support

REPLY
@colleenyoung

@micebyliz, if you are able to post a comment like you have here, you are already signed in to Mayo Clinic Connect. Tapestry and Helix are different websites. Here is the link https://www.helix.com/

If you are having issues with Mayo Clinic Connect, please contact us using this form: https://connect.mayoclinic.org/help-center/#get-technical-support

Jump to this post

Thanks so much. Someone called me and I was able to login with the info provided. I appreciate the help. I was totally frustrated 😠 😁

REPLY
@micebyliz

Thanks so much. Someone called me and I was able to login with the info provided. I appreciate the help. I was totally frustrated 😠 😁

Jump to this post

Glad you got it. I know how frustrating d#$@%n technology can be. 🙂

REPLY
Please sign in or register to post a reply.