PSSD Genome Project [Megathread]

This is a place to post research you have done on the topic along with your conclusions.
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Ghost
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Re: Genome sequencing (Emerging Trends!)

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Luis Fernando Lopez wrote:I just ordered the Ancestry version, I now realize you can make an account on 23andme, was I supposed to make one?
It shouldn't matter for now. Eventually yes, but for now it's ok. You'll have some time because it takes a while for the test to be completed.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
GIXXER
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Re: Genome sequencing (Emerging Trends!)

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Hey ghost sent emailed my raw data to you. Did you receive it?
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Ghost
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Re: Genome sequencing (Emerging Trends!)

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GIXXER wrote:Hey ghost sent emailed my raw data to you. Did you receive it?
Yep, got it. It's a bit different because it's in a slightly different format, but I'll see what I can do.

I've updated the stats by manually looking through some genes. THANKS!
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
GIXXER
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Re: Genome sequencing (Emerging Trends!)

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Notice anything similar to the others or odd that grabs your attention?
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Ghost
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Re: Genome sequencing (Emerging Trends!)

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GIXXER wrote:Notice anything similar to the others or odd that grabs your attention?
Yea it follows the exact same trends on the first 3 genes I looked at. The sexual dysfunction + SSRI one, and then the Vitamin D ones also.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
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Luis Fernando Lopez
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Re: Genome sequencing (Emerging Trends!)

Unread post by Luis Fernando Lopez »

I was looking through wikipedia articles on vitamins and I found something interesting on the Vitamin C article it says:
Simple tests are available to measure the levels of vitamin C in the urine and in serum or blood plasma. However these reflect recent dietary intake rather than total body content.[8] It has been observed that while serum or blood plasma concentrations follow a circadian rhythm or reflect short-term dietary impact, content within tissues is more stable and can give a better view of the availability of ascorbate within the entire organism. However, very few hospital laboratories are adequately equipped and trained to carry out such detailed analyses.
Is it possible that we have low total body content with several vitamins, should we try to get in touch with the very few hospital laboratories that can carry out these analyses, it seems like a good start.
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Ghost
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Re: Genome sequencing (Emerging Trends!)

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I think I might have to make an unpopular decision.

I've received 5 genomes, and 4 more are on their way. That's 9 genomes, and I'm very happy with the people that bought them, but it's simply too low of a response to be acceptable.

Why can I only get 9 people to do this test? Especially when the initial results are so exciting?
We're living with a life-destroying condition and today I saw a beer forum with more member response than ours.

I really don't see any excuse when we have a forum that has almost 700 members (I also have people on reddit and my site).

To me the options are:

1) People don't think this is an exciting test or think that the genetic test is dangerous/bad idea
2) People don't come on the forum (that's not true and you can see it from the numbers going on the forum and the reddit)
3) People think others will take the test and submit their results so they don't have to.

I didn't want to believe that it was #3, but...what else am I left to think at this point? I found a way to pay for part of people's tests and still no one posted that they bought one since then.

I'm overwhelmingly likely to take genome results off the forum for the forseeable future (months/years or more).
I will continue sharing constant updates to the people who have sent me data, but it's not going to be publicly available unless you actually contribute to the project.

I discussed a similar idea on the forum a few weeks ago. Nothing has changed since then, so I am in the first stages of moving forward with this plan.
http://www.pssdforum.com/viewtopic.php? ... ilit=forum

Obviously I'm not too happy at the moment, but I want to see less threads about how shitty PSSD is and more threads about what we're gonna do to make it better. If you are unwilling to spit into a vial and send results, then I'm unwilling to keep spendings hours each day coding and analyzing results for you.

EDIT: I will keep doing these things, but I will only be sharing it with people who help me.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
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Bear
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Re: Genome sequencing (Emerging Trends!)

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I completely agree that the constant complaining could lead the forum on a quick downward trajectory. As for symptoms, I honestly don't see the benefit of spending too much time discussing them. We've been talking about symptoms for years upon years, and freaking out over your glossy ballsack or the smell of your cum (yes, both real examples) isn't moving us any closer to a cure either.

I'm finding my way out of a difficult financial situation currently, so I apologise that I have not yet contributed data. As soon as I can afford it, I will purchase the 23andMe testing kit.
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Twentyoneguns
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Re: Genome sequencing (Emerging Trends!)

Unread post by Twentyoneguns »

Hi Ghost

I ordered two 23andme kits last week, one for me and one for my sister....who has her own problems with SSRIs which have included sexual aspects.

Both kits arrived, processed and returned so just waiting for the results. I'll forward both to you as soon as they are known.

Perhaps others have done the same and have just not let you know?

Regards

21g
Male
PSSD after 3 days on Sertraline (50mg) (Aurobindo) December 2016 to date.
Tinnitus, insomnia (1.5 hours/night sleep) poor memory/cognition as a bonus!
Possibly PSSD from October 1998...just didn't realise what I was suffering from! (pre internet)
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Ghost
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Re: Genome sequencing (Emerging Trends!)

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Thanks guys. That'll put us up to 12/13. I'm trying to get around 2x that, which I know we can do. I don't know how to push people, but I think that this is important and I can't do it without data from any and everyone who can contribute. I'll keep running analysis and letting people involved know what's going on. If we can reach 25 people then I'll feel a lot better about everything.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
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