LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I just did mine, but I am a little worried about seeing something come back that might make my lyme anxiety kick in- like "50% of people with xyz you have tend to get schizophrenia" or something.... I think it would *drive* me to madness just thinking about if I would or could actually become mentally unstable or whatever!
anyone regret getting this test done ?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
No. It shows my doctor exactly what needs to happen. It's a great new diagnostic tool.
Just because it gives percentages does not mean it's prescriptive.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
There are other outfits that will do DNA analysis. Anyone know how different they are? Why are lymed people using mainly 23andme?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Actually. I felt so much better after doing 23andme. My genes weren't as awful as I imagined. Some were bad, but then I had more control over what I could do to get better.
No regrets.
Honestly, I was a bit annoyed that they weren't as bad as I imagined. It meant I had to look elsewhere for answers. On the plus side, I did get my answers. It was just more detective work than I had anticipated.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
I wonder if these types of tests will eventually lead to Insurance problems ??
Posts: 3 | From Toronto | Registered: Mar 2015
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
you can do it anonymously, right? I mean, how would they know?
I do know of a woman whos family history with a bad cancer lead her to choose to have double mastectomy when she learned she had the gene, and sure enough they found cancer in there when they took her breasts off that they couldn't see with any scans.
I just know how I am. I am a huge imaginer. I don't want to talk myself into anything
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just don't put the whole thing (it would not fit, anyway) into your medical file. You have control over who gets this initially. So be mindful of how you share that.
23andMe nor whomever you choose to "read" the raw data portion of the test are in your local medical system. You will have the Adobe reader file, on YOUR computer.
Don't let your GP or any doctor within the "system" have the computer link or file - and if you share a hard copy with a doctor, be sure you trust that doctor and it really not even need be the complete file in your medical chart,
share just the parts that pertain to certain matters, such as the
MTHFR detail - you would want that in your medical file, for sure as it could help down the road with Rx decisions, etc.
the cytochrome / liver detail important, too, to have in your regular file for future reference. -
[ 03-17-2015, 02:56 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
phoiph, thanks, I see I even commented on that thread. I can't rememebr much these days.
Beths commented on there to give a fake name.
I think that is a good idea.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- But if you give them a fake name, you will NEVER be able to use the health detail for your good - you need to have your real name on this so it matches when you show them WHY you need to NOT have certain drugs or that you require this particular nutrient in that form.
Otherwise, no medical person will ever accept that detail as part of your medical file. And that could be very dangerous to you.
Use your real name, real birthdate - just don't give access to any parts that are not the most clear and relevant for your regular doctors who may put that part into the "system"
Be sure you trust the company who is going to "read" and "interpret" the "RAW DATA" from 23andMe. THAT is the most important part, actually, that you trust that party.
But, as for the practical use of this beyond your own use . . . within your medical "system" now & forever . . . .
Do not send the whole computer file via internet to any doctor who is in the system. Copy onto real paper the relevant sections and take those in, in person. The relevant sections can be scanned into your computer file from the paper.
A conversation with one's GP is good, though, as I'm not really sure how many GPs are up to speed on the MTHFR / cytochrome / liver detail here -- but it's still important in case you might be incapacitated in the future and there is a certain classification of Rx that you must avoid.
Now, it seems quite fine to use a nice name, as long as it's evident it's you - a name you use informally as a rule. Say, Trish for Patricia or Sam for Samuel. But not "Champ" or "Skip" -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
You also will not receive ancestry data without your real name.
(?)
I have no qualms about doing this or with using my real name. I have nothing to lose.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Just finished reading a book about what DNA tells about us, and the author makes the point that you lose control of what happens to this data. The company you deal with may be sold and different rules may apply. There are also insurance and other issues that might be involved.
So, keep that in mind when deciding how to proceed.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Wondering how many of you have been helped doing the testing. Are you better? And is it just supps being suggested. Thanks
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Agreed, Poppy, and it not only affects you, but anyone related to you genetically...now, and in the future...
Posts: 1880 | From Earth | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I don't want ansestory info. I already know probably more than they can tell me. from what I hear their anscestroy info is really vague and lacking.
yes, I would never give real information. but as keeble points out it may not work for me then becasue I'd have to prove myself to drs that it is me.
hmm..... there has to be another way.
this makes me think of another troubling bit of info- how schools are fingerprinting kids to show them how it works... big brother for sure. just like that scam on if your kids go missing they need their fingerprints to find them. or in the hospital to have your palm scanned. all a bunch of hooey.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Well, I didn't mean to discourage anyone. I would like some of that info, but don't know which company would be the best. Presumably all would have the same privacy issues, but are they different otherwise?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
The concern I have with these companies, is that the information is combined in a huge database that makes it very attractive and valuable to certain entities as a whole (e.g., insurance companies, drug manufacturers, hackers, etc.).
That said, there are also benefits that may outweigh risks for an individual, but I think people should be aware of the privacy risks and implications of giving up their most personal information (and possibly that of their relatives) so they can make an informed decision.
It is also possible that some of these tests could be ordered privately through their practitioner, which may avoid being part of the database.
Posts: 1880 | From Earth | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my husband just brought home new insurance forms for his work, and on it there was a statement about genetic testing.
it said that it would not be used for any kind of determinate.
so , but, who knows about the future.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
This is just wacko opinion here of course.(probably never happen)
Well here in Canada eh..... We are getting ads all over that if you let your auto insurance company put a little electronic box in your car to determine your driving habits you can get a 10 % discount on your car insurance.
Good drivers are rewarded! ($ Yoink $)
Now in ..... probably 3-10 years from now when you go to re-new or get new auto insurance you will probably have to possibly either accept the box or pay a HIGHER premium.
I think its called a roll out..... it takes a while but that's the way they do it.
Could this DNA testing possibly turn out to be a future similar scenario when we go to get life insurance or health insurance?
You won't "have to" do dna testing when you get insurance from us, but if you don't test we have to charge you MORE for your insurance.
And of course if something should turn up on your dna test we will have to charge you MORE because wellll you're predisposed to it.
Gee that's 2 MORES there I guess.
And PS.... If your driving a car that was built in the last 20 years. YOU Already have a black box in your vehicle!!
Now Have a Great Day
And of course totally speculation on my part
Posts: 66 | From Toronto Ontario | Registered: Apr 2014
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
In Canada, there is no law against genetic discrimination, although many European countries do have laws. As does the U.S., but it only applies to health insurance, not to longterm policies, or to disability or life ins. In Australia, individuals can be forced to give results of genetic tests to ins. companies.
Best to know the status of the laws in your country, if you are worried about the info getting out.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Just because there are laws, who can tell if they're enforced. You could be denied for insurance for a totally different reason, and never know it was actually due to your genetic information...
Posts: 1880 | From Earth | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
well I just got my results!
I am 1.1% Italian!! haha I KNEW it.
I did not give my name and I got enough anscestory info, so that is not correct that you wont get any if you don't give your name.
it does seem like a lot of guessing on their part, and now there goes the thought I have always had of science being the one true truth.
I see that a lot of their infor relies on the facts that other people have given them- such as I am ______ because 100% of other people that said they were 100% of ____ have the same DNA as me. ?? that is kinda lame I think. anyone could THINK they are 100% whatever becasue they want to think it or their greaat great great grandmother told everyone this, but in reality we are all mutts.
that is just my opinion of course.
so now I have pages of info and need to have someone tell me what's best for me..... the journey continues...
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic