What is Methyl Trapping ?

[surfbaby]

Zinc, manganese, selenium, P5P. Zinc I regularly take 50mg, but at times need more. I adjust by muscle testing. It seems to be sensitive to stress. Also manganese. I now use a small piece of sweet potato AM/PM for extra manganese. Plus a Thorne manganese capsule midday. Before adding the sw potato, I was needing more capsules.

I took several P5P capsules when I began. My goal was to remember dreams. Once I began remembering, I dropped my dose down. Later, after a period of detox, I began experiencing excess ammonia from P5P, as I had w/ B2. I now no longer take P5P on its own, just 25mg in my Multi B.

So you never took Evening Primrose Oil, Borage Oil or any other GLA? It is recommended in the Klinghardt protocol and others. I'm a little hesitant to take it, but I will try it (probably Borage), if you took it!

Otherwise maybe I will just start with 30mg Solgar Zinc citrate and 25-50mg P5P. (I currently take 25mg of B6, not P5P, in my Multi and only 2.5mg B6 + 2.5mg P5P in my B Complex.) I only have 5mg of Manganese Gluconate and 200mcg of Selenium as sodium selenate in my Multi. How much manganese and selenium do you take (or did you take in the beginning), and what forms do you take? Unfortunately I don't do well with sweet potato.

You said you were taking several capsules of Thorne P5P in the beginning. Each Thorne cap has 33.8mg of P5P, so how many milligrams total per day do you think you were taking in the beginning? Maybe 100mg or was it more like 150mg?

Did you ever experienced any increase in neurologic symptoms like tingling in your legs from taking that much P5P? I saw several posts in the forum where some people on FP had bad reactions to too much B6 (including P5P) such as return of tingling and numbness in hands/legs/feet, causing them to have to increase MB12. However other research I've done said that shouldn't occur with P5P (just with B6).
@caledonia Do you know anything about this? Is it because B6 competes with B12, and do you think it would occur with P5P also? I probably will start P5P at lower doses (25-50mg) and proceed cautiously. There is already 25mg of B6 in my Multi, but only 2.5mg B6 + 2.5mg P5P in my B Complex.

I don't have a lot of problems remembering dreams, but sometimes I do. Stressful or bizarre dreams is also a symptom, and I do have those several times a month, usually at certain times during my hormone cycles. I sometimes wake up (often but not always from a dream, unless I don't remember) with weird neurological/brain symptoms that can be intense and seem to last several minutes, although in reality it's probably much shorter. It's just so intense that it seems to last forever. Also seems to happen more during certain hormone cycles. When it happens, I see rapidly moving or spinning patterns, letters, abstract faces, or pictures, sometimes a stream of sparkling stardust that moves really fast. It's more disturbing than it sounds, although it's getting less than it used to be and I seem to be able to breathe through it and handle it better now. Did you ever have anything like this? When I get brave enough to start a new thread, I might post something about this. Any ideas for a catchy title?

 

[caledonia]

@caledonia Do you know anything about this? Is it because B6 competes with B12, and do you think it would occur with P5P also? I probably will start P5P at lower doses (25-50mg) and proceed cautiously. There is already 25mg of B6 in my Multi, but only 2.5mg B6 + 2.5mg P5P in my B Complex.

I don't really know the mechanism behind it off the top of my head. I've just heard of some people having this neuropathy type syndrome on even fairly low amounts. Since this can happen with higher amounts, I figured they were just more sensitive.

 

[surfbaby]

I took several P5P capsules when I bbegan. My goal was to remember dreams. Once I began remembering, I dropped my dose down. Later, after a period of detox, I began experiencing excess ammonia from P5P, as I had w/ B2. I now no longer take P5P on its own, just 25mg in my Multi B.

Hi @ahmo After paying more attention this week, I realize that unless I wake up during a dream, I am having more dreams that I cannot remember, except a vague elusive memory that I cannot bring into focus. I want to order my pyroluria supplements ASAP, so hoping you can verify whether you ever took any type of GLA (an Omega-6 oil such as evening primrose oil, borage oil, black current oil, or ghee). Apparently it converts to Arachidonic Acid and is recommended in the Klingardt protocol. It is the one supplement that probably will bother me more than the others, so I'm thinking of not taking it if you didn't.

I'm sorry I have been bothering you so much lately, but hoping when you have time you will answer the questions I had in my previous post to you on this thread about your pyroluria supplements. For now the GLA question above is my main question before I can order the supplements. Thanks so much as always!

P.S. Last week I reached out to @stridor mostly with a question about ADB12, but I wanted to ask him about MB12 injections and other things in the future. I got carried away introducing myself and wrote an overly long post (probably should have written a blog instead!) and he never answered (I tagged you on it). I feel terrible that I may have made the wrong impression, but I am still hoping he might reply. What do you think?

 

[ahmo]

@surfbaby I use EPO, sometimes ghee. But if you know that it gives you trouble, don't do it.

I only have 5mg of Manganese Gluconate and 200mcg of Selenium as sodium selenate in my Multi. How much manganese and selenium do you take (or did you take in the beginning), and what forms do you take?

I'm using Carlson selenium, 200mg. (He's a friend of Klinghardt.) Thorne Mg Biglysinatre, 15mg. Before I added sweet potato, I'd been testing for 2/day. Now with the sw potato, I'm using 1 only. I used high doses of minerals, especially zinc and selenium, when I started, mainly to help push out toxic metals. Now it's just maintenance doses.

Thanks for breaking your long post w/ underlines and bold. Much easier for me to get to see the question.

The thing is, we each have to find our own dosage. I use self-testing. I've now been doing it a long time, so I trust it. I don't know how I'd have proceeded without asking my body every step of the way. Here's a good very short simple method you might try. It takes time to develop trust, rapport. But developing a communication system with my body has been my greatest help.

Self-testing

Good written description of simple self-testing: http://www.goodhealthinfo.net/herbalists/muscle_testing.htm

Each Thorne cap has 33.8mg of P5P, so how many milligrams total per day do you think you were taking in the beginning? Maybe 100mg or was it more like 150mg?

I probably went up to about 100mg early on. Then it became clear that the extra wasn't helping. Later, following extensive detox, I started having noxious ammonia symptoms, and dropped to only the 25mg in B Complex.

Did you ever experienced any increase in neurologic symptoms like tingling in your legs from taking that much P5P?

No. and before, I used high doses of B6, and had no problems.

Did you ever have anything like this? When I get brave enough to start a new thread, I might post something about this. Any ideas for a catchy title?

No, I never had these symptoms. Maybe, Seeing Things Upon Waking...patterns, stars.....????

Last week I reached out to @stridor mostly with a question about ADB12, but I wanted to ask him about MB12 injections and other things in the future. I got carried away introducing myself and wrote an overly long post

Maybe he missed that one. I see he's not been on since Aug 18. You might send him a private message.

 

[surfbaby]

I use EPO, sometimes ghee. But if you know that it gives you trouble, don't do it.

Thanks for all the info! Did you use EPO/ghee from the very beginning of your pyroluria treatment, and do you feel like it helped? If so, I think I might tolerate the borage oil, but it has a stronger concentration than EPO (not sure about compared to ghee). How many softgels were you taking of the EPO (in the beginning and now) and what brand, or was it a liquid oil?

Also want to verify that you take 200mg of selenium, not 200mcg?

Did you get actual lab testing to diagnose your pyroluria, or did you go only by symptoms and the questionnaire? As I mentioned, I was borderline on the questionnaire where it said I might have it or I might not have it (leaning more towards having it), and I do suspect I have a bit of it, and I think it would really help me if I could get better from it.

I'm a little worried about all the detox you had from the protocol, especially since I haven't had my arsenic levels re-checked lately. I don't want to be detoxing that too quickly. Do you think that would be an issue from the pyroluria protocol? I think it would take more than that to detox arsenic, but I don't know.

 

[surfbaby]

The thing is, we each have to find our own dosage. I use self-testing.

P.S. I previously tried self-testing using some links I got from Caledonia before, and didn't have any luck. Just wasn't good at it at all. I will check out your link and try again. Meanwhile it is very helpful to know what someone else has done to have some kind of a starting point or end point, rather than just completely shooting blind. Thanks!

 

[ahmo]

Did you use EPO/ghee from the very beginning of your pyroluria treatment, and do you feel like it helped? If so, I think I might tolerate the borage oil, but it has a stronger concentration than EPO (not sure about compared to ghee). How many softgels were you taking of the EPO (in the beginning and now) and what brand, or was it a liquid oil?

I was using EPO before I knew of pyroluria, suggested by my acupuncturist years ago. I'd been taking 1300mg (NOW brand, Super Primrose capsules), but a couple years ago reduced to 500mg. I now find there are days when my body doesn't even want that much. I don't know why.

Also want to verify that you take 200mg of selenium, not 200mcg?

got me; 200mcg.

Did you get actual lab testing to diagnose your pyroluria, or did you go only by symptoms and the questionnaire?

I didn't test. Someone on the GAPS forum kept mentioning it. The first time I took the questionnaire, it didn't show anything significant. When I later did it again, including issues I'd had in the past, but not present, I rated high enough to suspect it might fit. I ordered the supps, and within 5 days of beginning, experiencing positive effects. Within 2 days I could tolerate sun on my skin, which had been painful and impossible from the moment of my collapse. By day five, my river of negative thoughts had ceased, I was able to see my future problem-solving as a challenge, instead of an impossibility. From here I went on to gene testing and methylation protocol.

I'm a little worried about all the detox you had from the protocol,

I didn't have detox because of the protocol. I'd recently gotten results showing SIBO and toxic metals, so I increased zinc, especially, to help flush out metals. I was also using other things. But it wasn't caused by correcting the pyroluria.

I previously tried self-testing using some links I got from Caledonia before,

The vid I linked is the one Caledonia recommends. Such a simple explanation. I had an advantage, have been involved in bodywork for many years.

 

[surfbaby]

I didn't test. Someone on the GAPS forum kept mentioning it. The first time I took the questionnaire, it didn't show anything significant. When I later did it again, including issues I'd had in the past, but not present, I rated high enough to suspect it might fit. I ordered the supps, and within 5 days of beginning, experiencing positive effects. Within 2 days I could tolerate sun on my skin, which had been painful and impossible from the moment of my collapse. By day five, my river of negative thoughts had ceased, I was able to see my future problem-solving as a challenge, instead of an impossibility. From here I went on to gene testing and methylation protocol.

Thanks for explaining your situation. I had a setback last week with cracked wisdom tooth (even going to a holistic dentist is one of the worst things for my chemical sensitivities/CFS). Trinew fridge delivered in a couple weeks, another big health strain due to chemicals, and gave to do a lot of cleaning (another big strain)

 

[surfbaby]

I didn't test. Someone on the GAPS forum kept mentioning it. The first time I took the questionnaire, it didn't show anything significant. When I later did it again, including issues I'd had in the past, but not present, I rated high enough to suspect it might fit. I ordered the supps, and within 5 days of beginning, experiencing positive effects. Within 2 days I could tolerate sun on my skin, which had been painful and impossible from the moment of my collapse. By day five, my river of negative thoughts had ceased, I was able to see my future problem-solving as a challenge, instead of an impossibility. From here I went on to gene testing and methylation protocol.

Oops, I hit post by mistake. To finish my previous list above (forgive the typos), I was avoiding buying new fridge, but no choice. So with all this add'l strain to my health, I decided to postpone the pyroluria protocol until after fridge is delivered. I will probably g

 

[surfbaby]

I didn't test. Someone on the GAPS forum kept mentioning it. The first time I took the questionnaire, it didn't show anything significant. When I later did it again, including issues I'd had in the past, but not present, I rated high enough to suspect it might fit. I ordered the supps, and within 5 days of beginning, experiencing positive effects. Within 2 days I could tolerate sun on my skin, which had been painful and impossible from the moment of my collapse. By day five, my river of negative thoughts had ceased, I was able to see my future problem-solving as a challenge, instead of an impossibility. From here I went on to gene testing and methylation protocol.

This is embarrassing. Obviously having terrible brain fog from all the pre-fridge delivery cleaning/rearranging (have to move a lot of things to get fridge to fit in my doorways/halls) because I hit that Post button again my mistake.

Anyway I will probably order pyroluria supplements before fridge comes so I can get started right away. Meanwhile, I am already noticing a difference in negative thoughts and remembering dreams just from adding 30mg of zinc/day. Do you think that could be really helping or just my imagination?

 

[surfbaby]

I didn't have detox because of the protocol. I'd recently gotten results showing SIBO and toxic metals, so I increased zinc, especially, to help flush out metals. I was also using other things. But it wasn't caused by correcting the pyroluria.

This makes me feel better about doing pyroluria protocol. Sorry to sound dumb but what is SIBO?

Btw, I got a great reply from @stridor but between my eyes being irritated from being online too much looking for a new refrigerator and the dental and pre-fridge delivery cleaning setbacks described in my previous few posts above, I haven't been able to post him back yet, as it will probably be a longer post.
@stridor Thanks so much for writing me such valuable info! Will reply to your post as soon as I can see well enough to post again.

 

[ahmo]

Obviously having terrible brain fog from all the pre-fridge delivery cleaning/rearranging

I want a new fridge. It will be slightly larger than my current one. I keep putting it off, dreading the rearranging I have to do to get it in.

I am already noticing a difference in negative thoughts and remembering dreams just from adding 30mg of zinc/day. Do you think that could be really helping or just my imagination?

Absolutely possible. This happened to me from taking the p5p, by day 5. The sun sensitivity stopped by about day 2. I can't say which of the supps did this, but something from zinc, selenium, p5p, manganese...

Sorry to sound dumb but what is SIBO?

Small Intestinal Bacterial Overgrowth. too many bad bacteria in gut.

 

[outdamnspot]

I PM'd you about this, ahmo, but thought I'd ask here as well ..

I saw my CFS doctor today. I tested positive for MTHFR. I tried Methyl-b12 previously, just as I was on the cusp of developing CFS, but found that it would make me crash.

She wants me to start taking a very low dose of Methyl-folate (about 200mcg). I informed her that I couldn't tolerate B12 and asked if this would put me at risk of methyl-trapping, but I'm not sure she knew what I was referring to.

If I start methyl-folate while working on some other steps -- she wants me on probiotics, antibacterial herbs, Zinc etc. over the upcoming weeks -- is it a bad idea, given that I would be hesitant to add in the B12 for the time being?

 

[outdamnspot]

Also, saw this in another thread:

With B12 deficiency, folate can buld up and become neurotoxic.

If there's gut dysbiosis, or SIBO, folate can be overproduced by the bacteria.

I've had very high serum folate, and extreme symptoms of B12 deficiency. ( Didn't have it measured until after supplemented. Had a very high MCV, MCH)
It was very painful.

For the past 2 years, I've taken only B12, ( methyl and hydroxo).

I've been tackling the SIBO, and been able to reduce the B12 dosage. Still can't tolerate much folate, yet.

Considering I have dysbiosis (confirmed by stool test), I'm wondering if I need to avoid the folate for now? Or if my early negative reaction to the B12 was caused by taking it without M-Folate.

My doctor gave me some other things to try -- Oil of oregano for the dysbiosis, Probiotics for a good bacteria undergrowth etc. She said to add each thing in step-by-step, but to start with the M-folate first.

I'm wondering if I should start another step for now and then look at methylation. It's hard when everything you try tends to make you worse :-/