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I can't believe how many problems have answers

Messages
43
I just read the SNP Interpretation guide and the 4R gut rebuilding program and although I am overwhelmed and wondering how I can possible do all the listed suggestions, I am also amazed by how many of my health problems have been addressed by those documents.

I want to make a sincere thank you to @caledonia and heartfixer for putting together those guides and I am going to try and decide on the best first steps. Any advice or corrections would be hugely appreciated. Please please, don't let me misunderstand this stuff. I can hardly keep it all straight.

There is a long list of things suggested for my particular situation: (ACAT1 02 (+/-), SHMT --, BHMT-02 (+/-), BHMT-08 (+/+), CBS C699T (+/-), CBS A360A (+/-), VDR BSM (+/+), MAOA (+/-), MTHFR C677T (+/-), MTHFR A1298C (+/-), MTHFR P93P (+/-), MTR A2576G (+/-), PEMT (+/+), APOE4 (+/+).

  1. Given that I have limited time and resources I have to pair down the list to the essentials but at this point they all seem to have the same priority.
  2. I think I should stop the methyls until I get some stuff cleaned up.I am not sure when the CBS gene allows me to take methyls.
  3. The SNP interpretation guide starts with ACAT1-02 and SHMT C1420T(which 23andme stopped testing) and I think I have had a leaky gut in the past but it seems to be in a pretty good state right now. I had a GI Effects Stool test done about 2 years ago and it showed me being in the green for almost every test. It has only gotten better since then. I was in the yellow for a few of the levels of bacterias but I feel like my gut is in the best shape of 20 years. So I think I am going to use the opportunity to fix some of my poor habits and move on. I will be removing sugars again and add back in my homemade sauerkraut. I will also add back in Gastro_ULC, and Pepcix, as well I will stay on Vitamins A, E, and C. I think I will have to buy ox salts and folinic acid ($45)
  4. The next snp addressed is CBS. I think for me this is pretty clearly expressed. I have always had problems with sulfa drugs (I assume that they have sulfur in them) and I have had anxiety since taking the Methylfolate. As well, I don't react well to luncheon meat and the like.
  5. There was a comment about the trapezius muscles. I have had this pain between my shoulder blades (which is where the diagram said the trapezius might be) off and on for the last 3 years and it is hard to take. I have been on some pretty strong pain killers when it is flaring. Could this be caused by ammonia?? If so Hallelujah!!
  6. I am going to try and follow the free thiol list that @caledonia recommended. I found a copy of the foods you can't have here (the first list). So, no high thiols and l-ornithine l-aspartate ($90)
  7. I also have at least one snp on the SUOX gene and may cause my PCOS. Or it could be that the CBS is taking all the molybdenum and none is left to the SUOX reaction. So I guess adding molybdenum, vitamin E succinate, and hydroxy-b12 (my amazon bill for all the above supplements is 195 +shipping)
  8. There is some interaction between CBS, VDR and COMT. I am (-/-) for COMT, (+/+) for VDR and (+/-) for CBS and I think that means that my dopamine is low and I can fix it with CoEnzyme Q10, carnitine and ribose but I am not sure. I am also (+/-) on every single MAOA allele and maybe that impacts things too? I ordered ribose and NAD+.
  9. I think since I am sensitive to methyls I will pass on the trimethylglycine to support my BHMTs.
  10. I think since I am sensitive to soy products I am going to pass on Phosphatidylcholine but I will add creatine in order to add back some SAMe.
  11. Yucca root on any protein. Charcoal at night.
  12. No b6 (but can add p5p). I don't know what to do with this so I am leaving it off my list.
  13. I have a PEMT (+/+) and it says that this means I have trouble creating choline. Should I take choline?
HOLY COW. That is a lot to do. I will be busier than a cat covering crap on a marble floor.

Sources: AMRI Heartfixer

Snps interpretation guide by caledonia

Wow you read to the bottom. Thanks. I appreciate it!!

Sleepingbeautycan (I think I can I think I can)
 
Messages
15,786
I think I should stop the methyls until I get some stuff cleaned up.I am not sure when the CBS gene allows me to take methyls.
The CBS SNPs tested have very little impact or none at all. They do not cause problems.

There is some interaction between CBS, VDR and COMT.
How so? Yasko's belief is that VDR and COMT are relevant to methylation because they might effect need for methyl donors or intolerance of them. But there's no evidence supporting her belief, and anectdotal data suggests that those VDR and COMT SNPs do not accurately predict a reaction to methyl donors.

I am (-/-) for COMT, (+/+) for VDR and (+/-) for CBS and I think that means that my dopamine is low and I can fix it with CoEnzyme Q10, carnitine and ribose but I am not sure.
Those VDR and CBS SNPs do pretty much nothing, so wouldn't be affecting your dopamine levels (or anything else, really). It would be far more cost-effective to test blood dopamine levels before starting on a lengthy and over-priced treatment for a problem which might not exist at all. Most lab services offer a catecholamine panel which includes dopamine.

I am also (+/-) on every single MAOA allele and maybe that impacts things too? I ordered ribose and NAD+.
+/- would be the most common and normal/balanced version. Doesn't make sense to "treat it".

Unfortunately the concept of methylation has been rather badly abused to support the use of elaborate protocols with no foundation in science or reality. I'd suggest ignoring anything which can be traced back to Yasko, since her claims can be proven wrong or unsubstantiated more often that not.
 

JES

Senior Member
Messages
1,318
Yeah, I agree. I think you can test the methylation approach with a simple trial on sublingual Hydroxo/Methyl B12, which is something that has helped quite a few CFS patients. Even then we don't know if the improvements are actually from methylation or some other property of B12 that is behind the improvement.
 
Messages
43
Yeah, I agree. I think you can test the methylation approach with a simple trial on sublingual Hydroxo/Methyl B12, which is something that has helped quite a few CFS patients. Even then we don't know if the improvements are actually from methylation or some other property of B12 that is behind the improvement.

I'm a little confused, according to what I read, Yasko believes that the hyb12 will be changed into cob12 which in the methylation cycle has an off product of homocysteine. Which, she believes, COMT will turn into ammonia. Which will not make my body happy. So testing with hyb12 will not be an effective test. Or am I misunderstanding something?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The CBS SNPs tested have very little impact or none at all. They do not cause problems. .

in my case I was sure I had mutations with CBS SNPs before I was tested due to some of the issues I have which I'd read were caused by these, sure enough on testing I did have double copy mutation of this. So I personally do think there is something in all this. I had started to get issues with suphur foods and also had a test showing I had almost no molybdenum.

In my case then acting on that knowledge it has actually helped me
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
There was a comment about the trapezius muscles. I have had this pain between my shoulder blades (which is where the diagram said the trapezius might be) off and on for the last 3 years and it is hard to take.

These tight trapezius muscles are a common side effect; for some the tightening includes neck muscles, and for me, this means my face gets constricted and can feel quite uncomfortable. What has helped, I've discovered, is supplementing with B2 (your MAO snps would indicate a need for more). Check out this thread, perhaps looking toward the end of it:forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209

All these threads take time to sift through, but many of them have good information. B2 will help you to tolerate the methyls I believe, and many have experienced. So work on it first. Some say for about a month.

Once the B2 is in there the folate is what helps me with the muscle tightening

Good luck unravelling your chemistry!

Oh, and btw, magnesium is supposed to calm down, or assist COMT. I take about 400mg of Magnesium Citrate/day and some malate.
 

JES

Senior Member
Messages
1,318
I'm a little confused, according to what I read, Yasko believes that the hyb12 will be changed into cob12 which in the methylation cycle has an off product of homocysteine. Which, she believes, COMT will turn into ammonia. Which will not make my body happy. So testing with hyb12 will not be an effective test. Or am I misunderstanding something?

I don't know what Yasko means with "cob12", it makes little sense to me. Methyl and adenosylcobalamin are the active forms of B12, cob12 is just a general naming for all cobalamins.

What I've read on this forum from late Rich Van Konynenburg is that Hydroxo is better tolerated, as it allows your body to convert the needed amount into methyl- and adenosylcobalamin. Cyano is the worst form to supplement and should be avoided.
 

Hip

Senior Member
Messages
17,809
@sleepingbeautycan
SNP interpretation in the context the methylation protocol is more of a religion than science: dozens of observances to follow, but very few that have any practical health benefits. You can ignore all of them really.

If you want to try methylation, it is pretty simple: you can start with a methylation protocol using B12 methylcobalamin and methylfolate, and if that does not work, perhaps try a protocol using B12 hydroxocobalamin and methylfolate (some people report that they respond better to certain forms of B12).

Or if you want to look at SNPs, according to Yasko, the type of B12 depends on your COMT V158M and VDR Taq: half way down this document, you will see a table showing how you can work out your best form of B12).



If neither methylcobalamin or hydroxocobalamin work for you, then it may be best to give up on methylation, and move on to one of the hundreds of other ME/CFS treatment to try.

Lots of people spend hundreds of hours reading about how to tweak cog X, Y or Z in their methylation pathway, in the hope that this will lead them to methylation salvation. But it rarely does.
 
Messages
43
I don't know what Yasko means with "cob12", it makes little sense to me. Methyl and adenosylcobalamin are the active forms of B12, cob12 is just a general naming for all cobalamins.

What I've read on this forum from late Rich Van Konynenburg is that Hydroxo is better tolerated, as it allows your body to convert the needed amount into methyl- and adenosylcobalamin. Cyano is the worst form to supplement and should be avoided.
I'm sorry Yasko didn't say cob12, I did. I meant meb12 (Thanks for correcting me)! But from what I read of Yasko's work before I work on the methyl problems, I should take care of my ammonia problems. I know I have sulfur and ammonia problems because it has frequently showed up in my blood work. And other things support it as well.

So, if Yasko is to be believed, first you work on your gut permeability (ACAT and SHMT), then you work on your ammonia cycle, then you work on the methyls. My gut permeability has been dealt with. I spent years getting rid of my IBS (with the stuff Yasko suggests, coincidentally), so now on to ammonia.

Keep on keepin' on,
 
Messages
43
These tight trapezius muscles are a common side effect; for some the tightening includes neck muscles, and for me, this means my face gets constricted and can feel quite uncomfortable. What has helped, I've discovered, is supplementing with B2 (your MAO snps would indicate a need for more). Check out this thread, perhaps looking toward the end of it:forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209

All these threads take time to sift through, but many of them have good information. B2 will help you to tolerate the methyls I believe, and many have experienced. So work on it first. Some say for about a month.

Once the B2 is in there the folate is what helps me with the muscle tightening

Good luck unravelling your chemistry!

Oh, and btw, magnesium is supposed to calm down, or assist COMT. I take about 400mg of Magnesium Citrate/day and some malate.

Oh such good information, thanks @Kathevans !! Darn I just checked and I don't have any B2 on it's own. When I am done I am going to have a bigger vitamin stock than a drug store!!

I looked at the B2 deficiency symptoms, I didn't see anything that seems to be me. I do have ferritin levels that are dropping but I attribute that to my fibroids. My hemoglobin is outstanding!! I will pass on the b2 but ...

I am taking the magnesium (I have glycinate). I started yesterday and haven't noticed anything yet.
 

Hip

Senior Member
Messages
17,809
@sleepingbeautycan
I don't know if this will help you, but my left trapezius muscle and the left side of my neck often get very stiff, which then sometimes leads to a mild headache and a sense of tension behind my left eye.

I am not sure of the cause, but I have noticed that the following medications rapidly disperse this tension and headache within around 12 hours or so of taking them:

Carnosine 1000 mg to 2000 mg
Trimetazidine 20 mg to 40 mg
Riboflavin (vitamin B2) 50 mg
Guaifenesin 400 mg to 800 mg
 
Messages
43
in my case I was sure I had mutations with CBS SNPs before I was tested due to some of the issues I have which I'd read were caused by these, sure enough on testing I did have double copy mutation of this. So I personally do think there is something in all this. I had started to get issues with suphur foods and also had a test showing I had almost no molybdenum.

In my case then acting on that knowledge it has actually helped me

RIGHT???!!???!!

I have been off of sulfur food for quite a while. Big time reactions. I am going to get the molybdenum today!!!
 
Messages
43
@sleepingbeautycan
I don't know if this will help you, but my left trapezius muscle and the left side of my neck often get very stiff, which then sometimes leads to a mild headache and a sense of tension behind my left eye.

I am not sure of the cause, but I have noticed that the following medications rapidly disperse this tension and headache within around 12 hours or so of taking them:

Carnosine 1000 mg to 2000 mg
Trimetazidine 20 mg to 40 mg
Riboflavin (vitamin B2) 50 mg
Guaifenesin 400 mg to 800 mg

Wow that is great information. I will add this to my book to see if this works the next time it happens!! Cool
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
  • There was a comment about the trapezius muscles. I have had this pain between my shoulder blades (which is where the diagram said the trapezius might be) off and on for the last 3 years and it is hard to take. I have been on some pretty strong pain killers when it is flaring. Could this be caused by ammonia??
It could be caused by tight pectoral muscles, rotating your shoulder blade (scapula) forward, and putting stress on your trapezius. Or it could be due to tight trapezius muscles. Have you been to a doctor or chiropractor to see if this is a physical problem, in need of a physical solution, such as physical therapy (stretching and strengthening) or chiropractic adjustments (a good chiropractor should also give you some basic stretching exercises)?
 
Messages
43
Interesting, and good for you! :) Would you mind summarizing?

Summarizing... hmmm. Well I went to a Naturopath (David Peterson) for a while and he had me on a huge list of supplements (which were quite costly) but at the end ... no ibs. Here is the list:

Morning:

Norlox 1 cap

Avipaxin 1 cap

10,000 IU vit d

Resvero 5ml

Curcumin-Pro 1 cap (400 mg curcumin, 125mg Lecithin, 60mg Bromelain)

Magnesium Plus 1 cap (25mg calcium, 50mg magnesium, 1.5mg zinc, 350mcg copper, 100 mcg manganese, 30mcg chromium, 12 mcg Molybdenum)

Gastro-ULC 2 caps

BAM 1 packet

Sometime in the afternoon
Esomeprazole Magnesium Trihydrate 40mg
Gastro-ULC 2 caps
Magnesium Plus 1 cap
(25mg calcium, 50mg magnesium, 1.5mg zinc, 350mcg copper, 100 mcg manganese, 30mcg chromium, 12 mcg Molybdenum)


Before my walk just before bed
Gastro-ULC 2 caps

Gabatone 1 cap

Seratone 1 cap
 
Messages
43
It could be caused by tight pectoral muscles, rotating your shoulder blade (scapula) forward, and putting stress on your trapezius. Or it could be due to tight trapezius muscles. Have you been to a doctor or chiropractor to see if this is a physical problem, in need of a physical solution, such as physical therapy (stretching and strengthening) or chiropractic adjustments (a good chiropractor should also give you some basic stretching exercises)?

Interesting thing happened when I went to the chiropracter. She did an upper spine adjustment and I passed out onto the floor. I left and never went back. I don't know what happened but it scared the poop out of me. She also turned white.

The thing is that the pain doesn't seem to be physical. In that I can stop it by fasting and I can trigger it (in a flare) by eating beef.