23andme useful?

[Prefect]

Has anyone here done this test, taken measures based on the results, and found it helped their condition?

 

[Neunistiva]

You can use the results to help Dr. Klimas' ME/CFS research
http://forums.phoenixrising.me/index.php?threads/get-genetic-testing-and-help-me-cfs-research.48428/

 

[PennyIA]

I know mine has helped with my conversations with doctors (to a tiny degree). Being able to call out unique genetic defects tied to nutritional deficiences in pubmed has gotten him to test me more frequently and acknowledge that it's not all in my head. It's not 'solved' my issues, but it took me a step further with my doctors than I managed to get to on my own.

 

[Basilico]

My husband and I both got our genetic info through 23andme, and then used that information to do a methylation protocol (which did not do anything for either of us). Ultimately, for me, it ended up being kind of useless, even though I'm still glad I did it.

My husband is prone to bursts of adrenaline and often his excessive adrenaline doesn't seem to go away for a long time. His 23andme results indicated that he has some issues with his MAO system, which allowed us to understand the reason for this; he has higher circulating adrenaline and his MAO system doesn't break down the adrenaline as efficiently as it should.

Knowing this, he is much more careful about taking supplements that can stimulate certain pathways. For example, he can't tolerate P5P (vitamin B6) because it stimulates adrenaline production, and when he takes it he gets adrenaline rushes when he tries to sleep. Additionally, he decided against trying an MAOI because even though it might help in some ways, it would likely make his excess adrenaline worse.

So for this, I would say that it was helpful, because it helped us to understand something about the way his body works.

In general, I always like having more information about what's going on in my body, but there's also a lot of complexity when it comes to deciphering the results; not all genes express, so it can be really frustrating trying to make sense of what it all means in terms of treatment.

 

[Prefect]

then used that information to do a methylation protocol (which did not do anything for either of us)

Yeah it's this methylation stuff that's got me interested in 23andme. The reason I ask is I want to find out if it helped anyone (for anything really, because I don't fit regular ME criteria, I just have GI problems and lots of neurological symptoms like dizziness, anxiety, brain fog, etc) before I fork out $300 to get it done.

Did you find out you were under or over methylators? and what was the treatment? I mean couldn't I just take some SAMe and see my reaction and decide which I may be?

I also have a very high threshold for what I say improved me. People with long lasting conditions tend to adapt to the condition even though they don't actually improve, and attribute that perceived "improvement" to whatever they happened to be doing that 3 month period or whatever. I don't consider anything improvement unless it's dramatic and full on recovery.

 

[Basilico]

Yeah it's this methylation stuff that's got me interested in 23andme. The reason I ask is I want to find out if it helped anyone (for anything really, because I don't fit regular ME criteria, I just have GI problems and lots of neurological symptoms like dizziness, anxiety, brain fog, etc) before I fork out $300 to get it done.

It was only $99 to get the genetic profile for 23andme - once you have that done, you can upload the results as a zip file to a selection of sites that will sift through the data and present it as a list of your SNPs (I think I used genetic genie, but it's been a few years, so I don't remember anymore - if interested I can try to look up the details)

Don't waste your time with their 'health report - I think it's a waste of time and not helpful if you just want to get into the nitty gritty of your actual SNPs.

If you don't want to waste money on getting it done, and you are interested in doing the methylation cycle protocol, just start out with the various vitamins and supplements (in the smallest doses possible) and see how you do - you could try taking one thing at a time to see if you react (if you are someone who tends to have strong reactions to supplements).

Did you find out you were under or over methylators? and what was the treatment? I mean couldn't I just take some SAMe and see my reaction and decide which I may be?

You could try the SAMe approach - I'm an undermethylator and I do very well with SAMe, and my husband is an overmethylator and he doesn't tolerate SAMe.

 

[Prefect]

start out with the various vitamins and supplements (in the smallest doses possible) and see how you do

I've been taking Natural Factor's High Potency B for a couple of months once a day.

Has 50 mg of B1, B2, B3, B6, 50 mcg B12 and 1 mg of Folate. I'm no better no worse.

 

[Basilico]

I've been taking Natural Factor's High Potency B for a couple of months once a day.

Has 50 mg of B1, B2, B3, B6, 50 mcg B12 and 1 mg of Folate. I'm no better no worse.

I just took a quick look at that brand to see which forms of the individual B vitamins they use.

Niacinamide and P5P are good forms, but unfortunately Natural Factor uses folic acid (garbage and can potential lead to problems) and for B12 they use cyanocobalamin (also garbage and the equivalent of taking nothing).

Instead of folic acid (a synthetic and mostly useless form of B9), look for methylfolate. I currently use Solar's metfolin, but Seeking Health is also an excellent brand (a bit more expensive). In case you are interested, here is a pretty good article explaining the difference between folic acid and folate: https://chriskresser.com/folate-vs-folic-acid/

For B12, the most optimal oral form is methylcobalamin. It is a sublingual form and you must hold it under your tongue for at least 30 minutes if you hope to absorb any of it.

Have you tried any of the other suggested supplements for the methylation protocol? It's been a few years since I've done it, so I don't remember the details well, but I remember things like Lithium Orotate and molybdenum.

 

[Prefect]

Thanks for the info.

I haven't looked all that much into methylation, I don't even know if I'm under or over, I just got curious lately because someone said coffee is a methyl donor and I find a couple of sips of coffee help me for a few hours, too small for caffeine to be the reason. But it just could be a wild coincidence.

 

[antherder]

@Prefect, This page is a really good explanation of the liver detox pathways. It helped me understand why I react to certain supplements etc, including coffee;

http://www.gilbertssyndrome.com/detoxification.php

 

[Prefect]

It helped me understand why I react to certain supplements etc, including coffee;

Hm. Not sure liver detox would be my problem. I've consumed immense amount of alcohol while being on an SSRI over the past few years while I was in "remission" with no consequence whatsoever. I haven't done so for a long time, now I just drink half a glass of red wine after dinner because my 2 year old has dropped my alcohol tolerance.

I'm not sure methylation is my problem to tell you the truth. My relapse has happened lately because of sleep disruption caused by my 2 year old, but I'm trying to look into the root cause, because my problems started 20 yrs ago with gut issues that accompanied neuropsychiatric/neurological problems. Intestinal permeability/inflammation and possible mitochondrial damage due to resulting cytokines.

I should be ingesting that tub of glutamine I have in my cupboard I keep staring at with skepticism.

 

[Basilico]

I'm not sure methylation is my problem to tell you the truth. My relapse has happened lately because of sleep disruption caused by my 2 year old, but I'm trying to look into the root cause, because my problems started 20 yrs ago with gut issues that accompanied neuropsychiatric/neurological problems. Intestinal permeability/inflammation and possible mitochondrial damage due to resulting cytokines.

It sounds like it would make sense to focus on improving your quality of sleep (if possible with a 2 year old!) and healing your GI system and supporting gut flora. I'm copying+pasting something I posted on another thread, and I would highly suggest taking some time to read through some of the many helpful probiotics threads on this site. Also, check out the article that I linked below from Scientific American; it discusses the brain/gut connection and seems especially relevant to the issues you mentioned.

Treating the gut biome may not solve all your health issues, but it may have a positive effect on some areas that would surprise you.

My husband had a pretty long period of time where his IBS-D was out of control. It was so bad that almost everything he ate triggered it. He couldn't leave the house for months, it was pretty serious. In the beginning, he was obviously reacting to histamine containing and producing foods/drinks, so we thought it was a histamine problem. When he took Histame pills with a histamine food, he could tolerate it. But at some point he started reacting to things that had no histamine connection, even things like white rice. (Yogurt and Kombucha were some of the worst triggers)

He tried an SIBO protocol, took the antibiotics, and he he got worse. Eventually, over time, it kind of went into remission, but he continued to have a super sensitive GI system that could spontaneously erupt with a D attack with the slightest provocation, so he always had to be super careful and on alert for anything that could bother him, and had to be pretty restrictive with food. A little while later, he developed these awful "panic" attacks, he'd wake up in the middle of the night with severe adrenaline bursts, at times so bad that he couldn't breath and we ended up in the emergency room. Doctors couldn't figure it all, he had a million tests done, everything showed him to be the pinnacle of good health (ha!).

Around this time, he started a serious supplementation with Mutaflor (E.Coli Nissile 1917) which is the absolute most interesting probiotic I have ever heard of, and I highly recommend people to research it, because it's fascinating. After starting Mutaflor, his mystery adrenaline attacks completely stopped. His gut also transformed - he no longer reacts to things in general (if he does, it's usually stress-related). His digestive system, while not 100% perfect, is so much better that I almost don't recognize him. Who would have thought his insane adrenaline/panic attacks were gut related? It turns out that not only is the majority of the immune system found in the GI system, but the digestive system has it's own nervous system called the Enteric (or Intrinsic) Nervous System. Even our emotions are largely controlled by the gut! There was a really interesting article about this in Scientific American: https://www.scientificamerican.com/article/gut-second-brain/

The problem with most commercially available probiotics (or even probiotic foods) is that they contain probiotic strains that are transitory and don't colonize the gut. Don't get me wrong, they still have value. But the benefit of strains like E. Coli Nissile 1917, and some others like L. Reuteri or Clostridium Butyricum (Miyarisan) is that they are capable of colonizing the GI system and having a lasting impact (Unfortunately, it seems that Miyarisan is no longer available on Amazon and may be difficult to source outside of Japan). This doesn't mean that once you take a few Mutaflor or Miyarisan you'll have plenty of it in your system forever. You might still need a 'booster' from time to time. But depending on what happens to be going on in your gut, having the right strains in there can make surprisingly positive changes in your overall health.

My husband and I do A LOT of fermenting (at least during our "better" moments when we have the energy) - we lactoferment sauerkraut, kombucha, wild yeast sourdough bread, yogurt, we make our own wine and beer and mead, etc... not just for the probiotics but mainly because fermenting not only makes existing nutrients more bioavailable but the action of the bacteria actually creates vitamins as a by-product.

Recently, I made a batch of sauerkraut that tasted amazing, but my husband said it didn't smell right (he has an amazing sense of taste and smell while I don't). I didn't listen to him because it tasted so good, and I was being obstinate (I hate throwing things out), so I decided to eat it anyway in my usual stubborn style. I got some GI distress as a result, and it turned out there definitely was something off about that batch. Then, I started reacting to other probiotic things (like kombucha) so I was worried that I'd allowed something bad to colonize.

Since I don't have any Mutaflor on hand, I started taking a probiotic from Nature's Way called "Primadophilus Reuteri Pearls" (I ordered it on Amazon and it was fairly cheap. I'm sure there must be other brands, but this is the only one I've use so far.) and within a few days all my GI distress was gone, and I'm not reacting to kombucha anymore. I was initially worried that the Reuteri wouldn't be aggressive enough to unseat the pathogenic invader, but it seems to have worked well. In addition to E. Coli Nissile 1917, Reuteri is my other favorite probiotic. If you read the research on it, it's amazing and probably one of the most important probiotics for just about everything in the body. For anyone who is having trouble getting Mutaflor (I order it from abroad and it's quite expensive), I'd suggest looking into Reuteri.

*Other people use probiotics like PrescriptAssist, which is a collection of soil based probiotics. I also have used a probiotic called Equilibrium, which is 100 different strains that should be in the human gut but have largely disappeared due to antibiotics and Western lifestyle. It may take some trial and error to find the probiotics that are right for you, so don't give up if you try one and it doesn't help.

Since you seem to have some reservations about taking L-glutamine, what about bone broth? There are many protocols for healing gut issues that focus on making/consuming homemade bone broth (which is very easy to make, if you have questions, I'm happy to give you some guidance on how to make it). It contains glutamine naturally, as well as a lot of other 'healing' nutrients like gelatin.

 

[Alvin2]

It sounds like it would make sense to focus on improving your quality of sleep (if possible with a 2 year old!) and healing your GI system and supporting gut flora. I'm copying+pasting something I posted on another thread, and I would highly suggest taking some time to read through some of the many helpful probiotics threads on this site. Also, check out the article that I linked below from Scientific American; it discusses the brain/gut connection and seems especially relevant to the issues you mentioned.

Treating the gut biome may not solve all your health issues, but it may have a positive effect on some areas that would surprise you.

My husband had a pretty long period of time where his IBS-D was out of control. It was so bad that almost everything he ate triggered it. He couldn't leave the house for months, it was pretty serious. In the beginning, he was obviously reacting to histamine containing and producing foods/drinks, so we thought it was a histamine problem. When he took Histame pills with a histamine food, he could tolerate it. But at some point he started reacting to things that had no histamine connection, even things like white rice. (Yogurt and Kombucha were some of the worst triggers)

He tried an SIBO protocol, took the antibiotics, and he he got worse. Eventually, over time, it kind of went into remission, but he continued to have a super sensitive GI system that could spontaneously erupt with a D attack with the slightest provocation, so he always had to be super careful and on alert for anything that could bother him, and had to be pretty restrictive with food. A little while later, he developed these awful "panic" attacks, he'd wake up in the middle of the night with severe adrenaline bursts, at times so bad that he couldn't breath and we ended up in the emergency room. Doctors couldn't figure it all, he had a million tests done, everything showed him to be the pinnacle of good health (ha!).

Around this time, he started a serious supplementation with Mutaflor (E.Coli Nissile 1917) which is the absolute most interesting probiotic I have ever heard of, and I highly recommend people to research it, because it's fascinating. After starting Mutaflor, his mystery adrenaline attacks completely stopped. His gut also transformed - he no longer reacts to things in general (if he does, it's usually stress-related). His digestive system, while not 100% perfect, is so much better that I almost don't recognize him. Who would have thought his insane adrenaline/panic attacks were gut related? It turns out that not only is the majority of the immune system found in the GI system, but the digestive system has it's own nervous system called the Enteric (or Intrinsic) Nervous System. Even our emotions are largely controlled by the gut! There was a really interesting article about this in Scientific American: https://www.scientificamerican.com/article/gut-second-brain/

The problem with most commercially available probiotics (or even probiotic foods) is that they contain probiotic strains that are transitory and don't colonize the gut. Don't get me wrong, they still have value. But the benefit of strains like E. Coli Nissile 1917, and some others like L. Reuteri or Clostridium Butyricum (Miyarisan) is that they are capable of colonizing the GI system and having a lasting impact (Unfortunately, it seems that Miyarisan is no longer available on Amazon and may be difficult to source outside of Japan). This doesn't mean that once you take a few Mutaflor or Miyarisan you'll have plenty of it in your system forever. You might still need a 'booster' from time to time. But depending on what happens to be going on in your gut, having the right strains in there can make surprisingly positive changes in your overall health.

My husband and I do A LOT of fermenting (at least during our "better" moments when we have the energy) - we lactoferment sauerkraut, kombucha, wild yeast sourdough bread, yogurt, we make our own wine and beer and mead, etc... not just for the probiotics but mainly because fermenting not only makes existing nutrients more bioavailable but the action of the bacteria actually creates vitamins as a by-product.

Recently, I made a batch of sauerkraut that tasted amazing, but my husband said it didn't smell right (he has an amazing sense of taste and smell while I don't). I didn't listen to him because it tasted so good, and I was being obstinate (I hate throwing things out), so I decided to eat it anyway in my usual stubborn style. I got some GI distress as a result, and it turned out there definitely was something off about that batch. Then, I started reacting to other probiotic things (like kombucha) so I was worried that I'd allowed something bad to colonize.

Since I don't have any Mutaflor on hand, I started taking a probiotic from Nature's Way called "Primadophilus Reuteri Pearls" (I ordered it on Amazon and it was fairly cheap. I'm sure there must be other brands, but this is the only one I've use so far.) and within a few days all my GI distress was gone, and I'm not reacting to kombucha anymore. I was initially worried that the Reuteri wouldn't be aggressive enough to unseat the pathogenic invader, but it seems to have worked well. In addition to E. Coli Nissile 1917, Reuteri is my other favorite probiotic. If you read the research on it, it's amazing and probably one of the most important probiotics for just about everything in the body. For anyone who is having trouble getting Mutaflor (I order it from abroad and it's quite expensive), I'd suggest looking into Reuteri.

*Other people use probiotics like PrescriptAssist, which is a collection of soil based probiotics. I also have used a probiotic called Equilibrium, which is 100 different strains that should be in the human gut but have largely disappeared due to antibiotics and Western lifestyle. It may take some trial and error to find the probiotics that are right for you, so don't give up if you try one and it doesn't help.

Since you seem to have some reservations about taking L-glutamine, what about bone broth? There are many protocols for healing gut issues that focus on making/consuming homemade bone broth (which is very easy to make, if you have questions, I'm happy to give you some guidance on how to make it). It contains glutamine naturally, as well as a lot of other 'healing' nutrients like gelatin.

Wow, your like the top expert i've ever met in this.

 

[Basilico]

Ha, @Alvin2 , I wish! I'm not an expert at all, my husband and I have just spent a lot of time (and money) trying to fix our GI systems and our overall health - at this point we've finally found what works for us (in terms of IBS at least), but our GI tracts constantly find new ways of surprising us

 

[Basilico]

@Prefect - you mentioned sleep issues. If you give me some details, I (or others) might be able to offer some suggestions for improvement. For example, do you have trouble falling asleep, staying asleep, waking up too early, not falling into a deep sleep, etc...

 

[Alvin2]

@Alvin2 - you mentioned sleep issues. If you give me some details, I (or others) might be able to offer some suggestions for improvement. For example, do you have trouble falling asleep, staying asleep, waking up too early, not falling into a deep sleep, etc...

You must be thinking of someone else, i've not mentioned much about my messed up sleep on this forum but since you ask, short version of just the sleep, neurologist says i have non 24 hour circadian rhythm disorder, my body clock moves 8 hours forward a month and cannot be adjusted by full spectrum light/melatonin/blue light blocking glasses.

 

[Basilico]

You must be thinking of someone else, i've not mentioned much about my messed up sleep on this forum but since you ask, short version of just the sleep, neurologist says i have non 24 hour circadian rhythm disorder, my body clock moves 8 hours forward a month and cannot be adjusted by full spectrum light/melatonin/blue light blocking glasses.

So sorry, I tagged the wrong person! But I'm very sorry to hear about your sleep issues - that sounds like a really tough one Have you been able to try any medications?

 

[Alvin2]

So sorry, I tagged the wrong person! But I'm very sorry to hear about your sleep issues - that sounds like a really tough one Have you been able to try any medications?

There are no drug treatments for non 24 and its extremely treatment resistant.
Sleeping pills don't do much except cause worse jet lag, so no real point

 

[Prefect]

Basilico,

Thank you very much for all this information.

Long story short, I've been running high octane for 20 years ignoring all my symptoms, getting told by everyone I should move on with my life, getting propped up by an SSRI so I can function, getting a career, getting married, etc, etc,

But due to the fact that I may not have addressed my condition fully I've been a cranky person and come undone once in a while.

My personality took a turn for the worse since the week I got sick in 1997 due to all the neuropsychiatric issues this illness has caused.

My marriage broke down recently due to this, and the last 10 months I've had 50% custody of a 2 yr old. I've always been a light sleeper due to this disease, but the nights I have him I don't sleep well even though he does, because I'm paranoid he's going to wake and and wake me up and I have to go to work.

A lot of my 1997 symptoms have come back and SSRI has pooped out due to the effect of this stress.

I'm using this crisis as an opportunity for get to the root of the problem.

Right now I'm seeing a naturopath who's got me on Bacopa Complex (mediherb), St Francis Black Walnut Parasitic treatment, Ichol Plus digestive formula, Goldenseal (mediherb), and nettle leaf tea, for whatever it's worth. I'm waiting for this treatment to end before I introduce probiotics, but Mutaflot is definitely on my list.

 

[Basilico]

My marriage broke down recently due to this, and the last 10 months I've had 50% custody of a 2 yr old. I've always been a light sleeper due to this disease, but the nights I have him I don't sleep well even though he does, because I'm paranoid he's going to wake and and wake me up and I have to go to work.

I'm using this crisis as an opportunity for get to the root of the problem.

Right now I'm seeing a naturopath who's got me on Bacopa Complex (mediherb), St Francis Black Walnut Parasitic treatment, Ichol Plus digestive formula, Goldenseal (mediherb), and nettle leaf tea, for whatever it's worth. I'm waiting for this treatment to end before I introduce probiotics, but Mutaflot is definitely on my list.

It certainly sounds like you've really been through a lot, and I think it's commendable that you are taking control and trying to use this time to help yourself.

I also had a traumatizing sleep issue (different from yours, but with some similarities). I'd been having some issues with sleep for years, but at one point I moved into an apartment directly over the landlord's son and his friend. During the week they were suit and tie guys, but on the weekend all hell would break lose, and they'd be blasting their sub woofer, having crazy parties until 4am....they were not receptive at all when we tried to speak to them, but they finally capitulated and instead of partying in their apartment, they'd have their friends over to pregame, then go out to the bar, then come home at like 3 am super drunk, slamming doors and yelling. It was so loud that it would wake us up from a deep sleep even with ear plugs in.

Many months of this eventually caused me to develop some kind of PTSD...even after moving out of that apartment, I still had so much anxiety about going to bed because I was expecting to get jarred awake at any moment, that I started hearing noises that didn't exist, and I'd get panic attacks when it was time to go to sleep. It took me about a year of living in a new place that was very quiet to finally get rid of this reaction. I had to talk to myself every night to calm down, and sometimes listen to meditation podcasts. I'm still hyper reactive to any sounds I hear when I'm trying to sleep (like tv through the wall or dogs barking) but at least I'm not reacting to sounds that don't exist!

Have you tried falling asleep to some kind of meditation podcast? It could be worth a try. If interested, I could send you links to some of the ones I used (they are free).

I'm sure having 50% custody is pretty tricky, and it may not be possible to make changes to your schedule (or you may not want to make changes) but since your sleep issues are tied to anxiety about your son potentially waking up when he's with you, have you considered the possibility of temporarily not having him sleep at your place (or reduce the number or nights) until you can improve your sleep anxiety? Maybe if you can have, say a few weeks of to retrain your brain to not get anxious when you go to sleep, you might stop having that reaction when you do have him. Again, I realize this might not be possible, just wanted to suggest it.