• 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 (FM), 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.

HDRI methylation testing + 23andMe; now what?

Symptomatic

Senior Member
Messages
197
I don't have the results in hand yet, so don't know specific values, but my doctor relayed the following info regarding my HDRI methylation testing:

Reduced glutathione - low
SAM - low
Folinic acid - low
Adenosine - high

And, per 23andMe/Genetic Genie, I am +/- for the following:
COMT V158M
COMT H62H
VDR Bsm
VDR Taq
MAO A R297R
MTHFR C677T
MTRR A66G
MTRR H595Y
MTRR K350A
BHMT-08
CBS C699T

Thoughts? Suggestions on where to start? NOTE: I can't take anything containing calcium.
 

caledonia

Senior Member
Rich's interpretation of the HDRI methylation panel:
http://phoenixrising.me/treating-cf...esults-of-the-methylation-pathways-panel-2011

Your HDRI results are about the same as mine. It looks like you have a partial methylation block and would benefit from methylation treatment.

It would be good to get the actual numbers because you can use the sum of SAM and SAH to see if your CBS is expressed. Also numbers that are near the ends of the high and low ranges are just as significant as being out of range.

You can also use the urine sulfate strips to see if your CBS is expressed. In my case, the sum of SAM + SAH and the urine strips correlated. So if that's the case, or you're having trouble with methyl donors causing a cortisol response (had that too), you should work on CBS first.

It will probably take several months to get your sulfur and ammonia levels down. Then you may simply be able to do Rich's simple protocol for the rest of it.

Since you have COMT, you'll need to be careful about taking too many methyl donors or you'll have mood swings. You can take a bit of time release niacin (50-100mg) to slow things down if you get a reaction from too many methyl groups, so have some on hand before you start.

Check out Heartfixer for CBS protocol info:
http://www.heartfixer.com/AMRI-Nutrigenomics.htm

You can also look at Yasko's book Autism: Pathways to Recovery. http://www.dramyyasko.com/resources/autism-pathways-to-recovery/
 

Symptomatic

Senior Member
Messages
197
Thanks caledonia!

I've read the suggested material (have been reading all of that since I got my 23andMe results back in December). I'm still confused though.

If we took COMT and CBS out of the equation, would it simply be that I need more methyl groups, period?

I get the CBS part, that I'm throwing the baby out with the bathwater, so need to stop that draining from occurring before supplementing upstream.

The COMT confuses me. So, I need more methyl groups, but not too many (so need to find a balance)? Are certain sources preferred over others, given my full info?

After seeing my 23andMe results (but prior to seeing my HDRI), my doctor wanted to start methylcobalamin injections; I was concerned about the COMT/potential methyl sensitivity, and wanted to see HDRI before we decided how to proceed.

Based on 23andMe, I bought urine sulfate strips. I'm somewhere in the 800-1200 range, it's hard to tell the difference between those two. I am definitely not at 400, but also not at 1600 either. Is this level high enough to warrant concern/need reduction before starting methylation? I know it's higher than it "should" be, but not as high as some folks go.

Any further insight would be most appreciated.
 

caledonia

Senior Member
Good thing you held off on the methylcobalamin injections - you probably would have had one hell of a reaction.

I have CBS, but not COMT. When I first started, I tried out a moderate amount of hydroxycobalamin, I think like 50mcg? After a few days, I started feeling stressed and anxious. When I retried at lower and lower amounts, the reaction was quicker, like a few hours. I tried methylcobalamin too - same deal. Even 1 mcg was bothering me!

So I got the urine sulfate strips. It tested 1200. I started on a low free thiol diet and gradually added in the supps. The urine sulfate quickly dropped to 800 after a week. I thought it was going to be easy - hah! Then it stayed at 800 FOREVER. Like 3 months. Finally, I got it to 400. Then I retried the B12. I was able to tolerate 0.5mcg (1/2 of one mcg). I've been able to gradually build it up from there to 16mcg per day (divided into 4 doses). That's taken about a month.

You might be different though, and hopefully not as sensitive as me. I've also been taking about 200mcg of methylfolate for a couple of years (technically, not good due to methyl trapping, but it helps with my MCS so I must have enough B12 stores to be making glutathione).

As for COMT, I have a friend who I'm trying to help with COMT. She did Rich's simplified protocol at the full doses for 5 weeks then ran into trouble and had to discontinue. She's not into dividing pills up like I am, so I haven't been able to convince her to try lower doses.
=-==-=-=-=

To specifically answer your questions - if you took out CBS and COMT, yes you could blast away with large amounts of methyl donors, basically a Freddd type protocol or Rich's simplified protocol.

Yes, I would try to get the urine sulfate down to 400.

For COMT, you need a balance, otherwise you'll get mood swings. Yasko's suggestion is to rotate methyl donors. So something like: Monday, B12, Tues folate, Wed TMG, Thurs, B12 and so on. I think hydroxycobalamin is supposed to be the preferred B12 for COMT. You body can make methylB12 and adenosylB12 from that in the ratio it requires. I would keep your amounts below what Rich suggests, or certainly no higher.

I also rely heavily on self muscle testing to determine not only if a substance is good to take, but the amount. I developed my own method for determining amounts. Muscle testing about 95% reliable - really helps guard against bad reactions.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I appreciate your responses on all of these methylation threads Caledonia. I am learning slowly. Can you elaborate on your muscle testing?
 

Symptomatic

Senior Member
Messages
197
It would be good to get the actual numbers because you can use the sum of SAM and SAH to see if your CBS is expressed. Also numbers that are near the ends of the high and low ranges are just as significant as being out of range.

OK, so here it is. Red numbers are out of range, orange are barely in range. The three numbers still in black aren't very solid either (all skewed towards the low end).

Edit: I had formatted the below info so it would look nice, but it didn't post that way. Any tips on how to make neat tables here?

Glutathione (ox): 0.49 (0.16 - 0.50)
Glutathione (red): 3.1 (3.8 - 5.5)
SAMe (RBC): 213 (221 - 256)
SAH (RBC): 49 (38 - 49)
5-MTHF: 8.6 (8.4 - 72.6)
10-formyl-THF: 2.7 (1.5 - 8.2)
THF: 2.00 (1.20 - 11.70)
Folic Acid: 0.74 (0.60 - 6.80)
Folinic Acid (WB): 8.0 (9.0 - 35.5)
Folic Acid, active (RBC): 327 (400 - 1500)
Adenosine: 22.5 (16.8 - 21.4)

Per Rich's interpretation info:

Glutathione, red/ox = 6.33 (should be up near 14, so glutathione depletion and oxidative stress)
SAMe + SAH = 262 (this is less than 268 and may point to my CBS)
SAMe/SAH = 4.35 (less than 4.5, so low methylation capacity)

Would appreciate any further thoughts/comments.
 

Symptomatic

Senior Member
Messages
197
I am also really confused about which supplements are "OK" based on my SNPs (above in original post).

I thought because of COMT that I need to be careful about methyl donors, so was thinking folinic acid, 5-MTHF, and hydroxocobalamin.

But I just read that due to my MTHFR C677T, perhaps folinic acid isn't the right way to go? I'm so confused...
 

Symptomatic

Senior Member
Messages
197
For COMT, you need a balance, otherwise you'll get mood swings. Yasko's suggestion is to rotate methyl donors. So something like: Monday, B12, Tues folate, Wed TMG, Thurs, B12 and so on. I think hydroxycobalamin is supposed to be the preferred B12 for COMT. You body can make methylB12 and adenosylB12 from that in the ratio it requires. I would keep your amounts below what Rich suggests, or certainly no higher.

If one is rotating methyl donors, should the dosage of the single donor taken per day be increased to be more in line with the totals that would be taken if you were taking multiple methyl donors at a time? For example, the SMP calls for 200 ug 5-MTHF + 200 ug folinic acid daily. Since I'll only be taking one donor at a time (TMG or 5-MTHF or folinic acid), should I aim to get up to ~400 ug/day of whichever one I'm taking that day?
 

caledonia

Senior Member
I don't think I would mix the two systems. It's either take the full recommended amount less frequently, OR take a fraction of the amount every day. They're just both methods of reducing the dose so you don't OD.

Some people have trouble with dividing pills and drops, or can't stand the thought of nitpicking with all that. That's why you would decrease the frequency of the dose instead. If you wanted to "increase the dose" you would simply take the same dose, but more often.

Keep notes or a journal so you can keep it all straight.

Have some nicotinic acid extended release niacin on hand in case things get out of control. You only need 50-100mg.

This is why I like using muscle testing to determine doses. Trial and error is such a pain.
 

Symptomatic

Senior Member
Messages
197
Are you saying that the SMP, by having you take multiple donors on one day, isn't at "full dose"?

Let's just take folinic acid for example. If I am only taking one donor/day, I would take the entire 800 ug pill?

And only fuss with pill-splitting/200 ug if I am taking multiple donors/day?

I have no idea what muscle testing is, or how to do it...

I do keep a journal. But I think I misinterpreted, so have been taking a fraction of one donor/day (which may not be a bad way to ease into things). I also failed to recognize B12 as a methyl donor since I'm taking the hydroxo version (but it looks like that's converted to the methyl form in the body?), so have been taking that daily, plus a fraction of one of the other donors/day. Need to get my story straight here!
 

Symptomatic

Senior Member
Messages
197
"Full dose" would be the full dose recommended by Rich, not necessarily the full pill.

Methyl donors = B12, folate, TMG

Thanks, this helps immensely. I started the full pills yesterday (thinking that's what you meant), so tomorrow will go back to partial pills. I'll get it right here sooner or later...
 

caledonia

Senior Member
Okay, couple questions on the muscle testing.

I found this video helpful to learn it. Don't worry about the lady's cosmic sounding name - lol.

Once you get a good handle on the basics (is this substance good for me to take?), then you can use it for amounts.

You would do a similar yes/no process while holding the substance, except say out loud (or think to yourself), amounts.

For example, if I wanted to determine the amount of folate that was right for me at time, I would hold the bottle of folate or a folate pill and take a guess at a dose.

More than 800 mcg - no
Less than 800mcg - yes
Ok we're on the right track, let's cut it in half to shortcut this process -
Less than 400mcg - yes
Less than 200mcg - yes
Less than 100 mcg - no
More than 100 mcg - no
100mcg - yes
So that's my dose.

I retest often, almost every time I take something to make sure things haven't changed. Sometimes you can have trouble getting an accurate dose if you have never taken the substance before. For example, I had trouble with getting a good dose for B12, but once I actually took it, I was able to hone in on the right dose. The previous dose wasn't that far off, so that prevented me from having a bigger reaction than I did.

In general, it works about 95% of the time for me.

And no, I don't really understand how it works, other than we all have an electromagnetic field surrounding us, so if you hold the substance, it will be within your electromagnetic field, which would be the same to your body's "lie detector" as if you had ingested it.