• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Who has improved their health through knowing their SNPs, and how did you achieve this?

Hip

Senior Member
Messages
17,858
Many people on this forum have had their genotype determined by 23andme.com, and by means of the Genetic Genie website, have become aware of the SNP mutations they have within their methylation cycle genes, and their detoxification profile genes.

In the light of this knowledge, a fair number of people on this forum have attempted to compensate for their SNP mutations (flaws) by taking appropriate supplements or making dietary changes which support the metabolic pathways connected to their mutated SNPs.

In this thread, could those who believe they have gained real noticeable improvements in their health from such compensating supplements or dietary changes kindly post the details.

When you posts these details, please can you state:

• The particular SNP mutation you are compensating for (for example: MTHFR A1298C), and whether you are homozygous (+/+) or heterozygous (+/-) for that mutation.

• The supplements or dietary changes you used to compensate for that SNP mutation.

• The noticeable benefits in your ME/CFS, anxiety, depression, etc, symptoms or your general health that you think you gained from these supplements or dietary changes.

• Optionally, you may want to add a biochemical explanation detailing how the supplements or dietary changes you used work to compensate for the SNP mutation. If you do this, please provide links to the scientfic sources of that biochemical theory.​


The idea of all this is to:

(1) To see how many people have derived noticeable health benefits as a direct result of having had their SNP mutations determined by 23andme.com, and by subsequently using supplements and/or dietary changes to compensate for these mutations. In other words, to see whether taking this 23andme.com SNP mutations test is actually useful or not for those with ME/CFS.

(2) To turn this thread into an informal database of supplements and dietary changes that can be used to successfully compensate for each specific SNP mutation. This database will then allow anyone who has had their SNP mutations determined to see which of these can be successfully compensated for, and which supplements or dietary changes are necessary in order to do so.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It has certainly been useful as far as my ME/CFS goes.

I too tired to go into what Im doing for it. so will add info in this post later (right now I cant think clear enough to say my supplements) but treating my MTHFR double copy in the correct way (I already knew I had that before I went throu 23andME) has helped me.. eg treating that gives me an increased level of endurance and possibly has helped me in other ways too (hard to say with the other things if it was treating my insulin issue or the MTHFR..but its clear the having untreated MTHFR mutation lessened my endurance).


My 23andME results also would of pointed me in right other directions too in things had already not have known about them, things which have helped me (but I already knew I had those deficiencies from hair testing) eg I had a gene issue which causes low molybdenum (supplementing with it gave me ability to do maths in head again).

23andME also confirmed a mutation I thought I had due to feeling nauseus with eggs etc So if I get more issues with my foods.. I know now I certain do have to pay attention to avoiding suphur causing foods.

As of yet.. I havent had a chance to put the other suggestion s I got from my 23andME SNP results in place ( the rest of the info I got from my genetic gene report on my SNPs)..

oh.. the detox result from genetic genie.. explained why I have so many drug reactions..it turned out I have issue with a certain drug family which make up many of the pharma drugs.. Ive reacted to so many drugs in that family before too.. so now I know from my results. which drugs to avoid trialing.

23andME helped put so many pieces in place for me.
 
Last edited:

WoolPippi

Senior Member
Messages
556
Location
Netherlands
+/+ MOA A R297R meaning that neurotransmitters (nor)adrenaline, dopamine and serotonin do not get converted quickly, making me have an overactive Sympathetic Nervous System + preventing me from sleeping through the night (all my life).
Now supplementing with oral 100mg bio-identical Progesterone every night and I now sleep through. I go from nonREMsleep to REMsleep, I no longer wake up after 5 hours. REMsleep gives a surge in GABA and HGH, this is healing. As a result I wake up more refreshed and have more energy during the day.
Other supplement for this SNP: twice a day Valerian pill. This makes me more relaxed during the day and provides quicker switch into healing PNS state when I take my rests (lay flat, relax the mind and digestion in the upper intestine starts. Twice a day. Result of this quicker switching: no longer malnutrition. HCL helps with this too.)
Other supplements for this SNP: Magnesium, NPC (Progesterone cream) and Lithium. (Li-Zyme by Biotics, it's a food stuff, not a drug). Result: better mental attitude: optimistic.
Other dietary supplements for this SNP: avoidance of nutmeg, sugar, vanillin, melatonin, MSG, soy (phyto-estrogens) and garlic since these enhance the excitatory neurotransmitters, I discovered. Vegetable oils also but I can handle those in small quantities.

+/+ MTR A2756G, +/+ MTRR A669 meaning my cells do not use B12 and Folate acid well, even though blood levels look good.
Supplementing with mB12 and Folinic Acid. Result: low homocysteine blood level and overall detoxing. (need to take it easy on the Folinic Acid though, no more than 2 mg per day, it enhances the excitatory neurotransmitters)
These supplements require others to go with them: Zinc, Selenium, Magnesium, Mangan, Molybdelum
Others need to be avoided like the plague: Lead, Aluminium (o.a. in vaccinations), Cadmium

homozygous for VDR Tag meaning I need more vitD (which is a hormone, btw, so too much is not good either).
Supplementing with vitD3 to keep perfect blood levels (between 60 and 80). Result: more energy, better bodily (cell) functions, no more winter depression.

I'm also homozygous for cyp2c19*17 but do not understand its consequences yet.
I do not supplement for SNPs that I am heterozygous for.

edited to put in a comma because I did not discover neurotransmitters, only what foodstuffs influence mine.
 
Last edited:

Valentijn

Senior Member
Messages
15,786
MTRR A66G confirmed that B12 was needed, though I already knew that due to trying Richvank's methylation protocol. I'm much more consistent about taking it now that I know there's a good reason, and my condition stays more stable as a result. I've also noticed that my condition deteriorates quite a bit if I forget to take it for a day or two. It's now the first thing my fiance asks if I'm looking sicker than usual - "Did you take your B12?!?" :lol:

My mother doesn't have any intense health problems, though she does have a couple mild issues, but also tried the B12 after getting the same results as me for MTRR A66G, and feels better when taking it.

I also found that I have a pathogenic missense mutation at BTD rs13078881, which interferes with recycling biotin. It shouldn't be bad enough to cause problems normally, though it causes a 50% reduction of enzyme activity, but I decided to give supplementation a try anyhow. I have a bunch of rare SNPs in another biotin recycling gene (HLCS) + health problems, so it seemed worth a shot. Skin problems seem to be improving as a result, and (maybe coincidentally) my last crash after severe exertion for a stress test involved absolutely no muscle pain for the first time in 3 years.

As a sort of reverse benefit, I found that my MTHFR gene was quite normal. As such I know I don't need to take extra folate, and that the form of the folate doesn't matter much for me, so I can keep taking a low dose of the cheap stuff in my B-multivitamin.

One of the hemochromatosis genes listed by 23andMe on their site came up heterozygous, which shouldn't cause problems but also means that I don't need to (and maybe shouldn't) supplement iron.

-----------

I also found someone on the forum with a mutation in their mitochondrial DNA which results in deafness when exposed to certain antibiotics. She now knows to avoid those antibiotics, and has passed on the info to her maternal relatives who have the same vulnerability. So it's not a health improvement, but rather the removal of a tiny risk of something very bad happening :p
 
Messages
12
Based on the following polymorphisms
+/+ COMT H62H, COMT V158M, MTHFR C677T, MTHFS, MTHFD1L, NOS3, BHMT, SOD2, SOD1 A16V, CYP2D6 S486T,CYP1B1 R48G,ADD1 G460W, DAO
+/- CBS C699T, BHMT-04, BHMT R239Q, VDR Bsm, VDR Taq, AGT M235T/C4072T, DAO, FUT2, GAD1, MTHFD1L, MTRR A66G, MTRR-11 A664A, MTRR, PEMT, SLC19A1, SLC19A1, TYMS

I have been supplementing with Solgar methylfolate 1600mcg plus 5000mcg of methyl B12 first thing every morning. Plus B6, magnesium, pottasium, molybdenum, zinc, selenium,kelp, liver tablets, curcumin.

Latest homocystein level was 7.1 umol/L whereas it was 11.6 in 2011.

Due to long term estrogen dominance and researching CYP1B1 which is involved in detox pathways I have been supplementing with diindolylmethane (DIM) for last four weeks and quite shocked to find my Oestradiol level went from 256 pmol/l (reference is 26-156) to 90 pmol/L and my Testosterone went from 22.4 nmol/L to 32. plus my AM cortisol was normal whereas it has always been on the high side.

also fasting blood glucose has always been 5.6 mmol/L but last lab was 4.9
 

Spinney Lainey

Senior Member
Messages
148
Location
London
Hi. Am thinking about getting this done. Please can people tell me how they analysed their results and subsequently found out how to treat them? Did people contact a specialist, or did you have some other method of analysing and deciding on treatment?
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
@WoolPippi
can I ask which progesterone cream do you use?
NPC Nature's Precise Cream by Serati

I just picked one from this list advised by JohnLeeMD.com, he wrote the book What Your Doctor May Not Tell You About (peri)Menopause, which I found very helpful.
Serati's the one I can get over here in sixpack without paying import duties. I've been using it for 5 years now. I use about 1 to 2 tubes per year (56 g/2 oz each; 25 euro each)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi. Am thinking about getting this done. Please can people tell me how they analysed their results and subsequently found out how to treat them? Did people contact a specialist, or did you have some other method of analysing and deciding on treatment?

You just need your raw data for all your SNPs from somewhere like 24andME (you can still get that there).. once you have it.. you just go to the genetic genie website (or there is also other places online you can do this) and download your raw DNA data into there.. for methylation results (and it also gives treatment recommendations too on your mutations) and also can get your detox results. One which is highly important to know is if you have a MTHFR double copy mutation (or a doctor can test you for that).

If you want to look into your DNA further.. Valentijin (once she's feeling better.. I think she taking a break) has made a program in which your raw data can be put in and which will show you your less common mutations (ones which only 10% of the population have or less. Once you know these you can look each one up online to see what it does (I found some very interesting things came up for me when I did that including some mutations which explained there issues too which had happened eg my child suffered severe jaudice when born... turned out it was linked to a mutation I have). I have a 1% mutation in which makes me more susceptable to getting lyme disease.

Or if you know a certain mutation to look for eg each SNP has a rs number.. you can just seek it out individually in your 24andME raw data results. (that confuses me so that is where i found Valentijns program and info on what I had abnormal, very helpful... so I could individually look up online).

The main thing you need is know your methylation issue areas which are availble by using genetic genie (which is free) after getting your results and easy to get the info on. 23andME testing is $99 to be tested (spit test) and get your raw DNA data (if you have interest in finding related people to you online 3rd-5th cousins etc, you can also do that at 23andME with the info they give).
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I also found someone on the forum with a mutation in their mitochondrial DNA which results in deafness when exposed to certain antibiotics. She now knows to avoid those antibiotics, and has passed on the info to her maternal relatives who have the same vulnerability. So it's not a health improvement, but rather the removal of a tiny risk of something very bad happening :p

When 23andME was doing the full health reports.. there was a drug or two which came back that I shouldnt take at all as due to my genes it could cause me death.. only people with my genotype got life threatening reactions to it. That is certainly good to know!! (cant remember now, I think it was a couple of antiviral drugs).

and one of my mutations highly increases my change of getting lung cancer even as a passive smoker if another was smoking in my house. If I was smoking it increases it by a very crazy amount .. 30? times (it may of been higher) more then normal or something. I got to get my daughter to stop smoking!! Knowing info like that could save a life.
 
Last edited:

Spinney Lainey

Senior Member
Messages
148
Location
London
You just need your raw data for all your SNPs from somewhere like 24andME (you can still get that there).. once you have it.. you just go to the genetic genie website (or there is also other places online you can do this) and download your raw DNA data into there.. for methylation results (and it also gives treatment recommendations too on your mutations) and also can get your detox results. One which is highly important to know is if you have a MTHFR double copy mutation (or a doctor can test you for that).

If you want to look into your DNA further.. Valentijin (once she's feeling better.. I think she taking a break) has made a program in which your raw data can be put in and which will show you your less common mutations (ones which only 10% of the population have or less. Once you know these you can look each one up online to see what it does (I found some very interesting things came up for me when I did that including some mutations which explained there issues too which had happened eg my child suffered severe jaudice when born... turned out it was linked to a mutation I have). I have a 1% mutation in which makes me more susceptable to getting lyme disease.

Or if you know a certain mutation to look for eg each SNP has a rs number.. you can just seek it out individually in your 24andME raw data results. (that confuses me so that is where i found Valentijns program and info on what I had abnormal, very helpful... so I could individually look up online).

The main thing you need is know your methylation issue areas which are availble by using genetic genie (which is free) after getting your results and easy to get the info on. 23andME testing is $99 to be tested (spit test) and get your raw DNA data (if you have interest in finding related people to you online 3rd-5th cousins etc, you can also do that at 23andME with the info they give).

Please could you (or anyone else) send me the exact link for the 24andME website where I can get these tests? I can only find a 23andME website, which says it's not doing health tests at the moment: https://www.23andme.com/health/ :(
 

PennyIA

Senior Member
Messages
728
Location
Iowa
MTHFR A1298C +/+

Increased dramatically my methylfolate (worked up to and now take 15 mg)
ALA
NAC
Vitamin C
Decreased my methylCobalamin
OptiCleanse Nutritional shakes
Fruit/Veggie smoothies
gluten free
dairy free
3x week epsom salt baths

VDR Taq +/- (I frequently test low for D vitamin levels)
Vitamin D drops

Not directly related to specific SNPs (well, that I've connect anyway - full results in my signature)- also taking smallest dosage available of Armour for thyroid (only added one week ago)

Related to lack of gall bladder - no greasy/fried/high fat foods

I did have DRAMATIC improvement in symptoms last year (normally I meet the ICC standard criteria - but am undiagnosed).... and felt very well, if not fully healed for a good eight months. I was doing slow motion exercises (yoga and pilates), keeping my house clean, my brain-fog was almost completely gone, though I was still plagued with mild fatigue (unlike the normal crushing fatigue) and I was coping well with my full-time job. Then I started taking adrenotone for adrenal support and crashed.

I've only re-started supplements about three weeks ago and am very much back on an upswing again. I'm still not back to where I was pre-crash by any means. But 'it does feel right' and waking up every day feeling just a little bit better is like a miracle. I do not plan on trying Adrenotone again. My adrenals still test wacky - but at this point, I'm hoping the methylation treatments will work the healing process if given enough time and that in the end I'll be under less stress and hopefully at that point the adrenals will calm down.
 
Last edited:

PennyIA

Senior Member
Messages
728
Location
Iowa
Hi. Am thinking about getting this done. Please can people tell me how they analysed their results and subsequently found out how to treat them? Did people contact a specialist, or did you have some other method of analysing and deciding on treatment?

I went to a specialist. I tried doing it on my own -but between the brain fog and conflicting suggestions I started out super, super low dose and after six months didn't see any improvement. Went to a specialist who was able to suggest a slightly more aggressive course of action and I started to see improvements within the week.
 

Hip

Senior Member
Messages
17,858
@Spinney Lainey
23andme.com still provide the same genotyping test for $99, and they still provide the required raw data file download containing all your genetic data, and they still provide you with ancestry information as well (they tell you where your genes come from geographically); the only thing 23andme.com were forced to stop providing is the health information related to your genes.

However, you don't need that health information, because the all the info you need to know (for methylation purposes) is available from the Genetic Genie website, after you upload your 23andme.com genetic raw data file to Genetic Genie.

The whole procedure works like this: first you need order a test from 23andme.com, which is done on this webpage. Within a few days, 23andme will send you a test tube. You provide a saliva sample in this test tube, send the test tube back to them in the courier envelope provided, and pay them $99. Around six weeks later, your genotype results become available. You then download to your computer your genetic results raw data file from 23andme.com (from this page, once they have processed your test), and upload this raw data file to the Genetic Genie methylation analysis webpage. Within a few minutes, Genetic Genie will give you your methylation analysis report. If you want to see what a methylation analysis report from Genetic Genie looks like, have a look my own methylation report here.
 
Last edited:

WoolPippi

Senior Member
Messages
556
Location
Netherlands
Please could you (or anyone else) send me the exact link for the 24andME website where I can get these tests? I can only find a 23andME website, which says it's not doing health tests at the moment: https://www.23andme.com/health/ :(
It is only 23andme.com and they have stopped these health reports for the moment. There's nothing to be done about that. They will be up and running again as soon as they get their administrative things in order.

We all got our reports before they stopped. EDIT: What Hip says. Get the test done and work with the raw data. That's what we all did.

Or you could get a Methylation panel done via ELN in the Netherlands. This is expensive and will not tell you about mutations but will tell about actual methylation process in your cells. Search the forums for "methylation panel eln" and you'll find more information. Here's their site. You probably need a doctor's referral.

I also suggest you start a new thread with your questions concerning this. :) Now it gets all muddled up in this thread.
 

Hip

Senior Member
Messages
17,858
Just went to buy a kit from 23andME and have seen that they're charging $79.95 for internation delivery! :(

Yeah, that's a lot of money, considering that they charge just $10 shipping costs if you live in the US. I reluctantly paid the $79.95, but it might be worth emailing them and asking if there are any cheaper options. Though bear in mind the shipping costs are for a two way carriage: it includes the cost of them sending you the sample kit, and the cost of returning your sample back to them. They use the DHL courier, and this courier can be arranged to come to your home to pick up your return sample (or you can drop it off at a DHL depot if you prefer).
 
Last edited: