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23Andme Or Other Genetic Tests


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#1 narcojesspy

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Posted 03 October 2013 - 03:11 PM

Not saying anything new, but wondering if anyone has tried genetic testing....

Reading about food sensitivities and understanding the way the human body processes certain foods and how it affects tiredness....it seems that food really could be one of the most powerful tools to keep symptoms down. (I know I can't be 'fixed' yet- if ever- but I'd be so incredibly satisfied with a clearing of that awful fog, even if just a by a little!...how I long for my memories of what used to be)

There isn't a stock answer because we're all different. There is our answer.

I was reading about val/val and met/met genotypes and it really got me thinking. If we metabolize certain things certain ways and a trend could be identified, then it makes sense that knowing your deck of cards could tell you, for example, whether provigil would work and nuvigil wouldn't work without having to trial them.

Add in genetic links that correspond with certain ancestral connections to location and food source...for example, coastal areas where fish is consumed more than any other protein source. Genes will say that although your family is American, and you think they have a Midwestern eating style, someone along the way lived in Alaska (still America) because you ended up with biological needs in line with their tendency to eat salmon. So you've always eaten a lot of chicken, for example. Your body, made up of a specific blood type, certain levels of hormones, certain deficiencies and allergies, other medical issues, and certain genetic evolutionary consistencies/necessities/trends, has to work harder to eat chicken because chicken has a protein that is hard FOR YOU, by your body's formula, to break down- since it isn't programmed to be familiar with it. It may learn, but you weren't 'assembled' with the best tools for breaking it down the easiest. This extra work, makes you more tired.

Oh, and you have narcolepsy.

It won't fix it to eat better, but it might make your body more resilient to tiring as it is forced to do from other triggers. So when you're "chicken-tired", you can't get up and go to the gym because the feeling is one of those "sorry I don't mean to be rude but I can't have a conversation right now" times where you need to sit and lethargically space out for a bit- a narcolepsy moment, but a slightly intensified one. Maybe if you didn't eat chicken, it would be a lighter feeling. You would maybe be able to go work out. This would support MORE energy.


Our genes be the instruction manual for pwn and people without it to what foods can allow our body to function at maximum efficiency. 23andme is able to take the results from your cheek swab and analyze it to point you in the right direction, apparently they can tell you exactly what types of food to eat and what types to avoid based on data they have collected to connect those trends.

Can't we all benefit greatly from this test?

That one company is $99 (not sure if there are others, but this one has been advertised a lot), and it seems completely reliable and genuinely reasonable and effective....not some thousand dollar invasive unpredictable piece of nonsense.

Has anyone tried it? Is anyone as interested in ordering this as I am? I'm actually excited by its potential! I think it's the accelerated version of trial and error dieting with real evidence and reason.

Thoughts? Am I being to optimistic?

Anyone first hearing of this and fascinated by the potential use of this tool?





SIDE NOTE:

Yesterday was 3 weeks of quitting smoking. It's different this time, everything about me feels that conviction. I will continue to be a nonsmoker this time. But failing many times before lead me to realize how helpful nicotine can be for me, for us. My quality of life has gotten better from quitting, I feel better...but I also feel worse.

My narcolepsy has a free reign on my body now. Guess some of us don't realize it but things like smoking when driving were why we always thought we were one of the lucky ones who had no problems staying alert driving (for the most part). Now I know it was working like the police being called on some kids that were bored and vandalizing their high school. Smoking was the cops and those kids are always getting into trouble. Now I fired my police officers lol...those kids are still running around and getting into moderately harmless trouble, but it's worse when it isn't kept it check.

Nicotine functions as a stimulant and helped me reenergize and refocus. And I smoked a pack to 2 packs A WEEK! Even the moments I used them made sense to be moments of a need for self medicating for narcolepsy, without realizing it. I was a light but consistent smoker. Driving, being up late, waking up. Sound relevant?

I considered a patch, but I don't really want to be a slave to nicotine- which really isn't any different than a drug like provigil when it's by itself. But since it is in other things, the potential for smoking again is high.

So this is my way of looking into other ways to feel better and reinforce quitting as the better choice. Last resort is thinking about nicotine patches or something. It was genuinely very helpful.

#2 Ferret

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Posted 03 October 2013 - 11:14 PM

https://www.23andme.com/

 

That is the website if anyone is interested.

It is fascinating. Somewhere on this forum is a link to a talk by Dr. Mignot (I looked but couldn't put a finger on it). He states that a certain percentage of the population has the gene for Narcolepsy but only a certain percentage of those actually get it. That, in fact, there are probably other things that actually trigger the gene (or something to that effect).

In other words, just because you've got the gene doesn't mean you'll get the disease.



#3 narcojesspy

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Posted 04 October 2013 - 02:18 AM

Yes I've read that too. The statistics are somewhere on the lines of 1 in 300 people has the mutation but only 1 in 2000 people has narcolepsy.

I know my trigger. I had an awful case of mono. Everyone knows that when you have mono you basically sleep for a month. Problem is, I never really "woke up" after that month. Never went back to normal.

I think I read that someone had a grand mal seizure that triggered theirs.

I think any severe illness or traumatic event will flip that switch for people with the gene. The body just needs a good shock to the system or scare and the immune system freaks out and over reacts and does the damage.

#4 ironhands

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Posted 04 October 2013 - 10:03 AM

Are you talking about HLA-DQB1-0602?

 

Not sure about my trigger, but it could go way back.  I was hospitalized for croup when I was 3-4, pneumonia a few years back, traumatic event 10 years ago...  Really hard to tell what set it off, but it likely also triggered celiac



#5 narcojesspy

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Posted 04 October 2013 - 11:25 AM

Yes that is what I was referring to.

As far as my trigger:

I was 16, a junior in high school when I had mono. When I went back to school after being home recovering for a month, I couldn't make it through the day without sleeping in a class or two (or three). I vividly remember my math teacher telling one of the boys in my class to pick his head up and pay attention and he said, "what about her? She sleeps in this class all the time and you don't say anything to her??" And my teacher responded with something like, "she was very sick and out of school for a month, leave her alone".

I was concerned about my inability to keep my eyes open or head up and told my mom something was wrong. We looked into mono and it said you can still be tired for as much as 6 months to 2 years after initially fighting it. So we always said "it's still the mono lingering".

My life had changed to one that required naps to get through the day- my mom is a nurse and thought I was just making myself more tired by doing so.....and she said I needed to stop taking naps because it was starting to control my life. Every time she came home from work she would run upstairs to my room and pull the blanket off me and say I needed to cut it out. I called her The Sleep Nazi. She would get genuinely mad at me for sleeping.

I met with all my teachers after my grades plummeted (my mom and guidance counselor scheduled that meeting and everyone including them was there) and I remember crying saying it felt like something was keeping me from doing what I could do before. Everyone thought I was just up late on my computer or hanging out with friends and that irresponsibility was causing my tired. I was so frustrated and upset.

3 frustrating years later I ended up committing to doing everything that people say for you to do when they find out that you're tired, because my lifestyle definitely could've been responsible and at that point I felt guilty like I was doing it to myself. "Go to the gym, eat better, sleep more, sleep more regularly"...waited a month for my body to adjust and reap the benefits of a healthier lifestyle and I felt no difference. Thought I was crazy, like, am I just whining about being tired while everyone else deals with it? It just didn't feel right.

Finally went to the doctor, thought I was anemic, my blood results came back perfectly healthy and I wanted to scream. Randomly got a postcard in the mail about UConn Health Center getting some new sleep center or something, and just made an appointment for the hell of it. When my doctor said narcolepsy I was like, yeah...right. Literally thought it was a joke and a waste of time and I shouldn't have gone. Did my sleep study (that awful MSLT...) and what do you know. It took a while for me to even accept that I had it. I remember my doctor said I fell asleep 8 minutes and 11 seconds and the cut off was 8 minutes, so I believed for a while that she jumped to conclusions and I was possibly misdiagnosed...although the diagnosis also made some sense to me. Then I remember finding out that people without narcolepsy are many minutes after that, so by being 11 seconds over I still wasn't close to normal and finally accepted it. Although I did feel weird that I didn't have cataplexy either, and friends and family didn't like that I had to be on provigil and insisted misdiagnosis. Now they get it, and I accept it.


My trigger was easy to identify because the consistency of school allowed everyone to see my inconsistencies and new failures.

What's crazy is I know how I got mono and it's not from any "kissing" lol. I was in marching band and we were lined up waiting to do some event. Out of boredom from waiting, me and my friend switched instruments (I played sax and he played trombone) and tried to make a sound come out of each others instruments to entertain everyone with our silly antics. He ended up having mono 2 weeks later. The only person I knew to have it at that time. A month after he got it, so did I. Turns out it lays dormant for 4-6 weeks. Crazy to think if I would've just done something else to deal with my boredom I might not have narcolepsy today. But who knows, I might have encountered other triggers since then that would've pegged me if not then.

#6 ironhands

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Posted 04 October 2013 - 11:32 AM

Personally I'm really interested in the comorbidities associated with HLA-DQB1 in general.  There are 3 other conditions associated there that have symptoms many of us seem to have. 

 

In addition to N, there's Diabetes/blood sugar, Celiac/gluten, and MS. 

 

I know several of us have problems with gluten, and MS is known to cause N as a symptom...  Really makes me wonder if there's one underlying autoimmune issue that could be used preventatively



#7 Potato

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Posted 05 October 2013 - 12:17 AM

23andme will not tell you if you have the HLA-DQB1-0602 allele, as far as I know. It will tell you if you have the COMT Val158Met SNP. I have full access to the site so I can tell you what SNPs/conditions are screened for if you have any questions. If anyone else has had the test done, please PM me your info if you don't mind.



#8 narcojesspy

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Posted 07 October 2013 - 07:29 PM

Just ordered my kit! It will be a while, but I'll be happy to message you my results. Anything to help any of us come up with ideas on to how to make this easier!

#9 Potato

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Posted 08 October 2013 - 12:05 AM

I thought I'd share what 23andme currently takes into consideration when determining your narcolepsy risk. Below are the SNPs 23andme looks at, along with citations for the studies that initially flagged the SNPs as being relevant:

 

rs1154155
Faraco J et al. (2013) . “ImmunoChip study implicates antigen presentation to T cells in narcolepsy.” PLoS Genet 9(2):e1003270.

rs7553711
Faraco J et al. (2013) . “ImmunoChip study implicates antigen presentation to T cells in narcolepsy.” PLoS Genet 9(2):e1003270.

rs2305795
Kornum BR et al. (2011) . “Common variants in P2RY11 are associated with narcolepsy.” Nat Genet 43(1):66-71.

 

You can put these SNPs, and others, into dbSNP at http://www.ncbi.nlm.nih.gov/snp/ to find out more information about them. Although, if you don't have at least an introductory level knowledge of genetics it may not make a whole lot of sense to you.

 

It's important to note that, at least for the time being, HLA-DQB1 alleles are not taken into consideration and, considering that only three SNPs on the HLA-DQB1 gene are checked by the chip, I doubt it's something that will be available anytime soon.



#10 narcojesspy

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Posted 08 October 2013 - 11:11 AM

Thanks. If I'm following you correctly, I think you are saying that there will not be a verification of my having narcolepsy? My genetics knowledge is limited...this all fascinates me so much though and I have personal motivation for wanting changes...maybe going into research may be the answer to my quarter-life crisis surrounding direction in life! (I'm 23) :)

However, verification isn't my focus in all this (although it wouldn't hurt to see)

I just want to see if there are any additional specific-to-me lifestyle changes I that can make to regain any energy or mental clarity. I want my body in a best case scenario so that maybe my narcolepsy won't be as hard.

#11 ironhands

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Posted 08 October 2013 - 11:17 AM

You'd really be the only one who can give specific-to-you lifestyle changes, but in general, many it seems have found relief through dietary changes, working out, and napping during the day.  As for smoking, it *does* help, but there are a lot of problems associated with it.  I recently started vaping and have noticed I feel a little more alert, and generally happier.  I'm looking forward to my cotton candy, black licorice, and bacon flavored nicotine shipment arriving soon :)

There's also the nicotine patch or gum if you still want the stimulants but not the smoke.



#12 Ferret

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Posted 08 October 2013 - 01:19 PM

The nicotine patch and gum did boodiddleysquat for me. It appears that the effect comes from the inhaled mode...probably faster to the brain.

My e-cig setup arrives with a friend from Canada on October 20th. I bought enough e-liquid to supposedly last me a month and a half. If everything goes according to plan, I should have a good idea by the two week mark, to determine if 1) it actually works for me 2) that the quantities needed are as advertised and 3) that I have time to import the e-liquid with a more knowledgeable time frame based on need.

It is nearly impossible to get e-cigs in Mexico as they have banned their sale. Interesting that they haven't banned actual cigarettes though...must be a really powerful tobacco lobbying group that's yanking somebody's chain.

Lifestyle changes? Fresh lean meats and veg...preferably organic.. No packaged or prepared food...we do all our own cooking from scratch. No salt and no sugar but herbs are OK. Bread must be fresh baked(no wonder bread for us). Nothing fried. I will sauté lightly with either virgin olive oil or cold pressed coconut oil. No big meals, three small balanced meals a day.

You find what works for you based on trial and error...and reading a lot of information. Oh, and I'm not lactose intolerant or gluten intolerant but I did go through the process of ruling it out.

and...no alcohol and a strict sleep and nap schedule.



#13 ironhands

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Posted 08 October 2013 - 01:26 PM

ecigs are banned in canada, unless they're not used with nicotine/tobacco products, though, it's not too difficult to find suppliers. 



#14 Potato

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Posted 09 October 2013 - 01:36 AM

Thanks. If I'm following you correctly, I think you are saying that there will not be a verification of my having narcolepsy? My genetics knowledge is limited...this all fascinates me so much though and I have personal motivation for wanting changes...maybe going into research may be the answer to my quarter-life crisis surrounding direction in life! (I'm 23) :)

However, verification isn't my focus in all this (although it wouldn't hurt to see)

I just want to see if there are any additional specific-to-me lifestyle changes I that can make to regain any energy or mental clarity. I want my body in a best case scenario so that maybe my narcolepsy won't be as hard.

 

That's correct. Genetic testing in general cannot tell you if you have narcolepsy. The HLA allele you possess can tell you if you are predisposed to narcolepsy, but not if you actually have it. But again, 23andme doesn't currently examine the necessary HLA alleles.

 

That being said, it can tell you if you are Val/Val, Met/Met, or Val/Met for the COMT Val158Met SNP. From what I've read, Val/Val genotypes have a good response to Provigil (modafinil), while Met/Met genotypes generally experience minimal benefit. Personally, I'm heterozygous (Val/Met) but I haven't tried Provigil so I couldn't tell you how I respond to it. I do know I tend to be less responsive to stimulants in general.

 

I actually did find out I'm a carrier for a serious genetic disease through it. Though that will only be an issue if I ever have children. It doesn't really impact me personally.

 

Anyway, it offers up some pretty interesting information, regardless of whether it picks up anything of critical importance that you didn't already know about.



#15 narcojesspy

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Posted 09 October 2013 - 11:57 AM

You guys just made this a little more interesting for me. The thing is, I did try e cigs. They are actually great. Fantastic while driving, in fact, should be prescribed to those who have trouble driving for them to keep in their cars. It really helped me just stay more alert and focused!! Long drives and traffic were NOTHING. Now I can't go down the road without a weird spacey feeling.

I'm just finally free from nicotine for the first time in like 5 years, and although I am aware that it isn't necessarily worse for me than caffeine without all the cancer causing cigarette chemicals, I'm still kind of scared of it. I wanted to stop smoking so badly for so long, I'm sure a lot of you know how we have it EVEN HARDER than the rest to try to stop. I'm not sure I have the self control to turn down a "real" cigarette once I am used to the stimulant feel again. This is kind of a desperate effort to see what else I can do that won't make it so obvious that I am lacking nicotine therapy haha. Hey I just realized, today is one month!!! :-D

My 18 y/o brother said something to me that really bothered me, because it's true. "That sucks that you have to make a decision on what you consider to be a better way of life, and both of your options are equally crappy." :(

I have been going to the gym more, hikes too...the fresh air and New England fall has been lovely. Daytime naps don't seem to be necessary unless I am reallyyyyy overexerting myself with tasks or earlier wake hours. And in both those cases if it reaches that point that I need a nap, my day is shot anyway.

The food thing should be easy for me. I worked in a fine dining restaurant for a little over two years, a vegan restaurant before that (I'm not vegetarian or vegan, it was just a cool place to work and I picked up some really awesome meatless meal composition ideas! At that point, you learn to really appreciate certain qualities of veggies and new ways to use them even in meat dishes) My point is, I was a server but I was constantly in the kitchen when it was slow asking the chefs about certain exotic things we'd get in and even asked for them to teach me how to do some stuff. As far as I know, I'm not sensitive or allergic to anything. I generally eat everything. I am not a picky eater at all and I've learned a lot of skills on how to make something good. (Most people would say fry it or add bacon lol, I would say fresh herbs or infused oils or maybe add an unusual veggie or some sort of cheese) Maybe I'm being lazy trying to narrow it down by DNA and my AB positive blood type, but I'm starting from a broad spectrum and appreciate things too much that, again, I wouldn't have the will power to NOT eat something unless I specifically knew it wasn't good, or rather, the best for me.

I actually got fired from that fine dining place at the end of July, which I'm certain was because of my narcolepsy scheduling issues. (I've spoken with an attorney, believe it or not he is highly respected general council for a multi-billion dollar international company and thinks I actually have an ADA case based on some of the specifics and my documentation...as you can see I like to write, a lot. Was referred to that attorney through someone I met there...karma?)

Good thing I have an eBay store that I've done for 2 years as back up (us narcoleptics know how scary it is to walk around wondering if we'll be fired because we were a little late for an AM shift) So I've decided I can't ever work a real job ever again in my life because it will end the same way, because no one understands or values how much harder I worked than everyone else there who would torment me about my behavior related to my disorder.

So now that I'm not stressed to death I'm focusing on my health, since working from home alone has been a difficult transition considering it is almost entirely passive compared to fast paced interactive serving. Maybe I'm trying to do too much right now, I've been very overwhelmed and depressed about the rest of my life with this...but that's artificial. I always remind myself that. I'm depressed, it's real, but it isn't caused by anything real. I can be happy and have been many times before with narcolepsy, just need to get past this rut.

Anyway, I might need some help with my case. I was considering posting some of my evidence and seeing what you all think, might need some authentic narco-testimony if it is taken to trial...

I'm not a vengeful person- this just needs to stop, we are not protected like we should be (or how "they" think we are, and I took the necessary steps!) and I feel like I might be the person to win a case finally and I owe it to the community to try if it is really as strong as this attorney said it was. (And the second opinion thought it certainly had some hard to argue points) That means a lot considering how no one wants to get involved with ADA cases because they are so hard to win.


Anyway, sorry for the tangents...all of them lol. Got a lot going on right now and you guys might be the only ones who truly understand.

#16 ironhands

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Posted 09 October 2013 - 12:09 PM

I've never smoked a real cig before, tried once but couldn't handle the smoke.  My lungs are really sensitive - maybe this is related to the auto-immune issues?  I tend to get a lot of lung/flu type stuff.

 

Anyway, since the ecig tastes so much better and cleaner from what I understand, I don't see why people *might* be tempted to go back.

 

I've definitely noticed an increase in mood, less angry.  Still sleepy, but there's somewhat less fog, replaced with a calm mist maybe, kinda dreamlike, whereas before I guess having to focus was causing me stress.  I'd still need to push myself to concentrate, but it'd be more relaxing.



#17 narcojesspy

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Posted 09 October 2013 - 01:15 PM

Psychological addition. When I smoked real cigarettes I smoked them around friends sometimes, for example. So if I'm out with friends, someone (that doesn't have to be my friend) might offer me a cigarette and I won't have my ecig on me that time....my restored nicotine addiction will push my currently tamed psychological desire for that social smoke session that I used to enjoy.

I don't think it would be an issue if you didn't smoke before. But it will remind me of what I used to do and enjoy. Plus I like the taste of cigarettes! My dad always smelled like smoke when I was little so I enjoyed the smell and found comfort in it.

Maybe if it was shaped more like an inhaler than something so similar it wouldn't be as risky for me.

The one thing about driving and real cigarettes is that you have to pay really good attention to ashing and not burning a hole in your interior somehow. And reaching to ash is movement. The behavior itself forces you to stay alert. The e cig doesn't have as much motion involved, but the nicotine still helps. I've put a "car pack" of normal non nicotine gum in my cup holder to serve a similar active purpose. Chewing helps you stay alert because you have to consciously do it. It's actually helped a bit. (Not much, but still)

#18 ironhands

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Posted 09 October 2013 - 01:27 PM

there are many different form factors available.  I have seen one that looks like an asthma inhaler, also tobacco pipes and cigars :)



#19 Ferret

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Posted 09 October 2013 - 02:06 PM

I'm addicted to having a functional life. Period.

Interestingly enough, I was seven years clean from smoking when I picked up that cigarette at Christmas in '89 and the fog cleared. So, you do the math...33 when the knees starting giving out, 35 for first full body cataplectic attack and 39  when I went back to smoking.

Do I think there's truth in the fact that nicotine is a suppressor of autoimmune diseases? Oh yeah! And I think I'm living proof of it.

I also know that, due to mitigating circumstances, this may not work for everyone in the same manner that some meds don't work for everyone.

IF the e-cig works for me, then I will have eliminated a lot of other negatives from the process (tar, pollutants etc.). That's a win/win.

IF the e-cig works, then I would NEVER EVER be tempted to go back to the old way because I have been "enlightened". And I would NEVER EVER leave home without it. Do Asthmatics go out without their inhaler?



#20 ironhands

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Posted 09 October 2013 - 02:32 PM

I gave up on having a functional life over a decade ago; but that was because I'd been told it was "just depression", and none of the meds really did it for me.  I doubt much will change if/when I get the proper diagnosis, or medications, but I'll be happier if I can make it 9-5 without yawning, or sleep more than 2 hours without waking up.