treating SNPs in an incorrect order?

[oh_noes]

Short version:

Is it harmful, either temporarily or irreperably, to treat SNPs in the wrong order?


Long version:

I'm writing this in conjunction with another thread I just posted http://forums.phoenixrising.me/index.php?threads/how-to-detox-when-your-detoxification-pathway-is-impaired.27574/ in which I mention starting amino acids to increase nitric oxide. I'm aware, however, that Yasko says to treat the SNPs in this order:

1. SHMT/ACAT
2. CBS, MTHFR
3. MTR /MTRR
4. BHMT
5. MAO A
6. SUOX
7. NOS
8. VDR

Now, whilst my symptoms and clincial findings thus far lead me to firmly believe I am +/- or +/+ for all those SNPs, I have not yet had my results from Yasko (I'll be sure to post them when I do).

I'm unsure what to do in order to treat SHMT and ACAT, but I began addressing the CBS defect by doing weekly activated charcoal + magneisum citrate flushes about 3 months ago. No improvements symptomatically (if anything I'm only getting worse), and my ammonia level in Yasko's UAA/UEE (urine aminos and essential elements) was in the white area, so, indecipherable. I do not (yet) use the urine sulphite strips (although I'd be happy for someone to recommend a good brand to me).

My issue is desperation (I'm fully aware that is a major problem for me). I get desperate, and try things despite the potential caveats, hoping for some - any - improvement, although I invariably find none or only get worse. I keep holding on to the fantastical hope that the next supplement I find will make me feel better. The question is, could I be doing myself irreperable damage by treating the SNPs in the wrong order?

I will update this post with a link to my current supplement regime, and if anyone cares to comment it would be very welcome.

Thanks

 

[PeterPositive]

My issue is desperation (I'm fully aware that is a major problem for me). I get desperate, and try things despite the potential caveats, hoping for some - any - improvement, although I invariably find none or only get worse. I keep holding on to the fantastical hope that the next supplement I find will make me feel better. The question is, could I be doing myself irreperable damage by treating the SNPs in the wrong order?

Unfortunately I am on the same boat. I have been banging my head against a brick wall for years and so far the amount of time, money and research I have put into my healing has produced very little results. I have also learned the hard way that there's no need to get too excited if things seem to improve for a couple of weeks or months because typically all improvements can vanish in a couple of days for no apparent reason.

At the moment the seasonal changes of the weather can improve or worsen my conditions much faster and potently than any group of 10-20 supplements. I literally have no control over whatever the problem or problems are.

Sorry for not being of much help here, indeed my post is probably the less encouraging thing you would want to read. I apologize for that. For some reason your message strongly resonated with my frustration.

I have also not followed the "proper order" when dealing with snps. I have SHMT1 and one CBS mutation. The latter is probably not going to be a major issue, plus I don't touch any food containing high sulphur. As regards SHMT I still have to figure out if and how to deal with it. (e.g. folinic acid could help but I have mthfr too, so it's probably counterproductive)

I guess the biggest problem is finding an expert doctor in this field, which is insanely difficult, even more so where I live.

Good luck and sorry for not being able to really help. I will read the other replies, there's lots of expert and helpful people around here.

 

[oh_noes]

Sadlt we're too similar, Peter. Like you, any improvements I've seen when introducing new supplements have been extremely transitory. I don't want to admit defeat to this condition but it's so utterly dispiriting when you've got so many complications that treating one contraindicates another, and furthermore when you're spending copious amounts of money and nothing works consistently. No experts where I live either; I learned that the hard way, too.

God, I wish I was able to not be so gloomy about this, but everywhere I turn it seems everything is hopeless. I just can't find it in myself to be positive right now. Sorry.

 

[caledonia]

Short version:
Is it harmful, either temporarily or irreperably, to treat SNPs in the wrong order?

In general, as long as you Start Low and Go Slow, you might have minor trouble or not get results in the short term, but all you need is to go back a step to fix things. I don't think there is permanent damage to doing things "bass ackwards". I've done this inadvertently myself.

That being said, I have heard of at least one person having to go to the hospital because they didn't know they had COMT mutations and got too many methyl groups, causing mood swings. The amount that caused this problem was actually quite small. They did recover, so it wasn't permanent, but of course this is something you would want to avoid if possible. This was caused by not knowing their mutations, and skipping ahead to the Second Priority mutations.

Long version:

I'm writing this in conjunction with another thread I just posted http://forums.phoenixrising.me/index.php?threads/how-to-detox-when-your-detoxification-pathway-is-impaired.27574/ in which I mention starting amino acids to increase nitric oxide. I'm aware, however, that Yasko says to treat the SNPs in this order:

1. SHMT/ACAT
2. CBS, MTHFR
3. MTR /MTRR
4. BHMT
5. MAO A
6. SUOX
7. NOS
8. VDR

Now, whilst my symptoms and clincial findings thus far lead me to firmly believe I am +/- or +/+ for all those SNPs, I have not yet had my results from Yasko (I'll be sure to post them when I do).

That list is not correct. There are three First Priority mutations - SHMT, ACAT and CBS. All of those three need to be taken care of before moving onto MTHFR and MTR/MTRR.

Why don't you slow down a little and wait until your SNP results are back. As Yasko is fond of saying, this is a marathon, not a sprint. I don't think I've seen anyone who had every single one of those SNPs. See the story above about treating yourself without knowing your SNPs.

I'm unsure what to do in order to treat SHMT and ACAT, but I began addressing the CBS defect by doing weekly activated charcoal + magneisum citrate flushes about 3 months ago. No improvements symptomatically (if anything I'm only getting worse), and my ammonia level in Yasko's UAA/UEE (urine aminos and essential elements) was in the white area, so, indecipherable. I do not (yet) use the urine sulphite strips (although I'd be happy for someone to recommend a good brand to me).

Using charcoal only won't fix CBS. You only need to treat CBS if it's expressed i.e. causing problems when you start MTHFR/MTR supps, or if you have problems with sulfur foods, meds or supps. Heartfixer has a good summary of how to treat CBS.

My issue is desperation (I'm fully aware that is a major problem for me). I get desperate, and try things despite the potential caveats, hoping for some - any - improvement, although I invariably find none or only get worse. I keep holding on to the fantastical hope that the next supplement I find will make me feel better. The question is, could I be doing myself irreperable damage by treating the SNPs in the wrong order?

Please try and relax - it will all work out. There is no magic bullet - you have to go through each step methodically, one bite at a time.

This might be a good time to go through all the links in my signature and try to educate yourself more and/or work on the gut if you have gut issues.

 

[caledonia]

As regards SHMT I still have to figure out if and how to deal with it. (e.g. folinic acid could help but I have mthfr too, so it's probably counterproductive)

Only if you don't tolerate folinic acid. This seems to be a minority of people, so you're probably ok. Freddd mentions having trouble with vegetables in conjunction with having trouble with folinic acid supps.

It would be nice to know if those people have SHMT SNPs. It doesn't make sense to me that they would.

Maybe a poll could help us figure this out.

 

[PeterPositive]

Only if you don't tolerate folinic acid. This seems to be a minority of people, so you're probably ok. Freddd mentions having trouble with vegetables in conjunction with having trouble with folinic acid supps.

It would be nice to know if those people have SHMT SNPs. It doesn't make sense to me that they would.

Maybe a poll could help us figure this out.

It would be a good idea. Indeed I don't have problems with leafy green vegetables and I have also taken folinic acid for a short period of time with no ill effects.

I should also add that when I stopped taking folic acid I didn't notice any difference, now I just take methyl folate and still I am unable to see differences, but it's probably premature to say anything about it. Part of the problem is also establishing the proper dosage. Another "mysterious" variable for me at the moment.

Cheers

 

[veronica_corningstone]

I started off with Yasko's simplified program and do regular testing through her, which has provided me with great advice. I stuck with the basics and stayed on-plan until testing through her showed I could move to the next level or benefit from a non-basic supplement. I'm progressing well and have felt better than any time I can remember, at least 15 years.

You mention that ammonia is indecipherable (meaning too low?), so I'd stop those charcoal/mag flushes that are making you feel worse.

Have you done the HMT through her yet? That, combined with the UEE, provides some good info into your mineral status. While you're waiting on the results of your snp test, you could be working on mineral and gaba/glutamate balance. Bringing up my potassium level has been life-changing. Whoops. Just saw in another thread that you've already completed step 1. In that case, you could also move onto the short cut (the supplements are recommended for everyone, not just those with BHMT snps), then lithium and B12, depending upon what your UEE/HMT showed for lithium/cobalt. But take it slow with methylB12. COMT and VDR Taq snps *could* have problems with the methyl donors.

 

[oh_noes]

Hi @veronica_corningstone

I'll be sending my hair sample for the HMT off on Monday. My lithium was undetectable (in the white) on the UEE. Cobalt wasn't tested.

What do you do for potassium? I said I couldn't afford this (and I can't) but I've been taking 250ml coconut water daily for the last week, which is 23%RDA potassium. I've also been taking 2x 1g doses of potassium gluconate, which adds a further 16%, but I really cannot get above that, and I'm not feeling any better at all.

 

[veronica_corningstone]

For potassium, I do mostly gluconate with some citrate. I try to eat high potassium foods, but there's no way I could eat enough to get what I need on some days.

When I'm low, I keep water with gluconate in it by me all day and sip on it. If I feel ok, I sip less. When I feel the low-potassium symptoms coming on (with trial and error, I've learned to recognize the early warning signs), I sip more and then those symptoms go away in about an hour. (Although I should mention that as I've been figuring this out, a couple times, I let potassium get too low. While supplementation helped a little immediately, it would take me a few days of increased supplementation to really climb out of it.)

Did you do the HMT and UEE through Dr. Yasko? If you send your concerns and your supplement list, she will make suggestions when she reviews your tests.

 

[oh_noes]

Hi @veronica_corningstone yes I sent Dr. Yasko my concerns. She recommended several things, some of which I am already taking, and others which seem to contra-indicate my SNPs, so... I'm hardly an expert, though. I'm just concerned, perhaps unduly. I'm sure her protocol works fantasically for many people; I'm just not entirely sure there's a way forward for me particularly with it. I don't know.

What are the symptoms for you?

 

[veronica_corningstone]

My potassium symptoms are:
1. Headache. Starts as a tight muscle in my upper back, which potassium fixes. If I don't take anything, it travels into my head and turns into full-fledged migraine.
2. Insomnia. When it's not bad, I fall asleep easily, wake during the night, but fall back asleep easily. When it's bad, I may not sleep all night.
3. General crappy feeling, like a hangover. Pressure all over my face and head, fatigue, slight nausea, jittery, slight buzzing feeling in my head. Even if I don't sleep horribly, I'll feel this when I wake up. I used to confuse it with fatigue from insomnia because it went hand in hand with the insomnia, but now I realize it's separate. If I wake up feeling it mildly, good potassium supplementation will make it go away, even if I didn't sleep well the night before. Or I could have slept great and awakened feeling ok, but if potassium drops during the day, this feeling will come on. I confused this with glutamate excitotoxicity for a few months this summer.
4. Tinnitus.
5. Cramps/spasms. Starts as quick little muscle jolts, like if I reach my hand up, I get a split-second, mild "cramp" in my shoulder. Turns into major leg/foot cramps at night, but this usually doesn't happen until my potassium is pretty low.
6. Sore neck/shoulders in a completely different way from the headache or cramps.

Unlike many others, it doesn't seem to affect my gut at all.

Good luck figuring this out, it is not fun.

I should also mention that there have been times when my potassium need was insatiable and the only way to get relief was to stop doing what was causing it, like backing way down on some of the B's I was taking, even though the dosages were moderate. At first, I resisted because when I first added the B's, I felt really great and I wanted to cling to the possibility of getting back to it. But I ultimately couldn't make it work and have to go more slowly.

 

[Freddd]

My potassium symptoms are:
1. Headache. Starts as a tight muscle in my upper back, which potassium fixes. If I don't take anything, it travels into my head and turns into full-fledged migraine.
2. Insomnia. When it's not bad, I fall asleep easily, wake during the night, but fall back asleep easily. When it's bad, I may not sleep all night.
3. General crappy feeling, like a hangover. Pressure all over my face and head, fatigue, slight nausea, jittery, slight buzzing feeling in my head. Even if I don't sleep horribly, I'll feel this when I wake up. I used to confuse it with fatigue from insomnia because it went hand in hand with the insomnia, but now I realize it's separate. If I wake up feeling it mildly, good potassium supplementation will make it go away, even if I didn't sleep well the night before. Or I could have slept great and awakened feeling ok, but if potassium drops during the day, this feeling will come on. I confused this with glutamate excitotoxicity for a few months this summer.
4. Tinnitus.
5. Cramps/spasms. Starts as quick little muscle jolts, like if I reach my hand up, I get a split-second, mild "cramp" in my shoulder. Turns into major leg/foot cramps at night, but this usually doesn't happen until my potassium is pretty low.
6. Sore neck/shoulders in a completely different way from the headache or cramps.

Unlike many others, it doesn't seem to affect my gut at all.

Good luck figuring this out, it is not fun.

I should also mention that there have been times when my potassium need was insatiable and the only way to get relief was to stop doing what was causing it, like backing way down on some of the B's I was taking, even though the dosages were moderate. At first, I resisted because when I first added the B's, I felt really great and I wanted to cling to the possibility of getting back to it. But I ultimately couldn't make it work and have to go more slowly.

Hi Veronica,

More than 30-40mg of B1 and/or B2 DAILY and more than about 100mg of B3 DAILY can cause way too much potassium and l-methylfolate to be needed while bringing healing to a halt. The upper limits might be even less for some people. To avoid other problems these need to be taken in at least 2 divided doses a day.

You sound like more potassium is needed. MeCbl, AdoCbl, L-methylfolate and l-carnitine fumarate also are needed to correct so many of the problems. The affect at least 10 differe3nt types of muscle pains.

 

[Freddd]

Hi Oh-noes,

I don't think anybody in the world has an answer to that question asked that way that works. However, if one fixes partial methylation block, methyltrap and partial ATP block with all 4 of the deadlock quartet and all needed cofactors that over 200 symptoms will improves and many completely go away.

 

[Freddd]

Unfortunately I am on the same boat. I have been banging my head against a brick wall for years and so far the amount of time, money and research I have put into my healing has produced very little results. I have also learned the hard way that there's no need to get too excited if things seem to improve for a couple of weeks or months because typically all improvements can vanish in a couple of days for no apparent reason.

At the moment the seasonal changes of the weather can improve or worsen my conditions much faster and potently than any group of 10-20 supplements. I literally have no control over whatever the problem or problems are.

Sorry for not being of much help here, indeed my post is probably the less encouraging thing you would want to read. I apologize for that. For some reason your message strongly resonated with my frustration.

I have also not followed the "proper order" when dealing with snps. I have SHMT1 and one CBS mutation. The latter is probably not going to be a major issue, plus I don't touch any food containing high sulphur. As regards SHMT I still have to figure out if and how to deal with it. (e.g. folinic acid could help but I have mthfr too, so it's probably counterproductive)

I guess the biggest problem is finding an expert doctor in this field, which is insanely difficult, even more so where I live.

Good luck and sorry for not being able to really help. I will read the other replies, there's lots of expert and helpful people around here.

The only way you will know how much folinic acid affects you is to do a trial 100% without for a L-methylfolate trial, get healing started well, get rid of all the folate deficiency symptoms then try taking some folinic acid and see what happens. Nobody knows how much folinic acid is too much for anybody, whether it is limited to a few or everybody over a certain amount.. The only way you can ever know is to try A-B trials for yourself. It doesn't even save any money to be committed to folinic acid, it has a tremendous possible downside and no possible upside. It is not necessary or sufficient. L-methylfolate is both necessary and sufficient.

It is possible to keep confounding the issue indefinitely and asking questions that don't have definite answers or have multiple conflicting questions and/or are so complicated nobody knows the answer if there is one. A large part of solving a problem is stating it in a way that there are only non-conflicting possible answers. I've spent 30 years solving problems. The first part for me is always to be able to ask questions that are not ambiguous or have ambiguous answers.