1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Is 23andMe worth it?

Discussion in 'Genetic Testing and SNPs' started by Elisa, Sep 12, 2012.

  1. Hi All,

    Like many of us, I have limited resources. But I am very motivated to find tests that allow me a greater understanding of my illness. I have been sick a very long time and have been of late VERY discouraged. I have been taking Dr Enlander's MAF 878 and it has nearly toppled me, twice - I can do NOTHING. So needless to say I am frustrated.

    I have a birthday coming up and am trying to decide if 23andme would be a valuable addition to my hundred of other tests...

    Is it worth it? Would you do it again? Anyone wish they hadn't?

    Any amazing findings?

    I hope enough people see this to help me decide.

    Also is there a ME/CFS grouping? Meaning has anyone asked 23andme to group those of us identifying ourselves w/ this illness. If not, isn't this something we should pursue?

    All for now and God Bless,

    Elisabeth
     
    merylg likes this.
  2. geesiddiqui

    geesiddiqui MTHFREase

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    I think it's probably worth it if you can get a groupon/livingsocial type of offer
     
  3. Lynn_M

    Lynn_M Senior Member

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    23andMe had a $50 off three-day sale about a month ago. I had previously signed up for a demo account, and 23andMe sent me an email announcing the sale. I don't know anything about the groupon/livingsocial type of offer mentioned about, so I don't know if that's a better deal or not. I've read that 23andMe does have a sale a few times a year.
     
  4. caledonia

    caledonia

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    Yes, sign up for a demo account and they'll let you know when they're having a coupon/sale. You have to be ready to jump on it when it happens, because they seem to be very short sales.

    Another good one would be the HDRI methylation panel. The SNPs tell you tendencies, the methylation panel tells you what's actually going on.
     
    BlueberryNights likes this.
  5. kday

    kday Senior Member

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    I'd say it's worth it.

    Why? Well, I have found out I have a rare condition called pseudocholinesterase deficiency. I have to be really careful around certain anesthetics during surgery as I could stop breathing, etc with some drugs. This is good to know if I ever have surgery or am intubated - something important the surgeon needs to know.

    This is against conventional thought, but taking Lecithin (choline) has been really beneficial to my brain. I can't explain the science, but it seems that I react very well to supplementing it. This little experiment probably wouldn't have taken place without 23andMe testing. I'm also going to eat only organic vegetables now to avoid carbamate pesticides.

    This deficiency can be both genetic and acquired. So if it's a little of both, that's really not good.

    And something else that came up was I am a carrier of Tay Sachs. While this may not be what is screwing up my brain (going to talk to genetic counselor to be sure, it can be something I can pass on to my kids. So it would be good to know that my partner doesn't carry the gene as it's deadly.

    And I am not promoting my website (which is a work in progress) by any means. I'm just sharing how I benefited.
     
  6. bykerchic

    bykerchic

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    I just sent mine in today. Hoping to find out something. My dad apparantly had the acetylcholinesterase dysfunction and never came out of a coma after his surgery. Anesthesiologist advised all family members to get tested before a surgery so hoping to find out about this possibly from the genetic testing. Good luck to all who give it a try!
     
    roxie60 likes this.
  7. helen1

    helen1 Senior Member

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    kday I'm curious about your comment that genetic testing was what prompted you to try your choline experimentation. What genetic result got wondering about choline?

    Elisa, I found genetic testing helpful. Amongst other things, I too have pseudocholinesterase deficiency, so have had the whole family tested for that, and several have it also. I almost died in surgery because of it. Also had my kids do 23andme and because of that have been able to help my son with mood issues using mB12, mfolate and B6.
     
    kday likes this.
  8. perchance dreamer

    perchance dreamer Senior Member

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    I do worry about insurance companies somehow getting genetic information from tests like 23andme and using it to deny insurance to people in the U.S. based on preexisting conditions, even if a person is not symptomatic yet or never becomes symptomatic. I know the Affordable Care Act prevents denying insurance based on preexisting conditions, but who knows what will happen when the other party gains control in future elections.

    I told my doctor my concerns, and he said if I order it on my own it's not considered a medical record and insurance companies can't get the information.

    I'm probably being paranoid because years ago I was denied insurance when I tried to get it privately.
     
  9. SickOfSickness

    SickOfSickness Senior Member

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    You get a lot of information from 23andme and I feel it's very worth it, however, for someone with a low budget, if they spend on this testing, they have to give up something else. So it depends. I think that many ME/CFS patients are better off spending the money on supplements. Perhaps start methylation without testing. (There is a thread about skipping testing to save money.)

    The most amazing could be sometimes people learn of relatives they never knew they had, but this is rare. Imagine logging on and seeing there is a half-sibling or even full sibling you never knew existed.

    I have not seen any. It would be great to have. I feel like it's hard for us patients to get very far with it. We need some organization or 23andme to be interested in our illness.
     
  10. upwards

    upwards

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    Can anyone else confirm this last sentence?? I am holding back on ordering 23and me. Really want to test my daughter, but hate for her genetic data to be bought and sold over the her next 70-80 years on the planet!

    Upwards
     

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