B-12 - The Hidden Story

[ahmo]

@saint OK saint, you've got to slow down. As pela said, Jarrow is no longer the right B12. But don't go taking these things by the handful. You'll just ramp up your anxiety, and maybe some of the muscle/nerve symptoms as well.

I've been on GAPS diet 2.5 years and Freddd's Protocol for 1 year. I've essentially healed my decade-long ME/CFS.

I came across this vid fortuitously. The last 30" or so are an excellent calming meditation. I later purchased one of his for download, 2nd link. I've listened to many guided meditations, found this to be excellent.
http://www.youtube.com/watch?feature=player_detailpage&v=kFnLR9PLH8A
http://www.thehealingmind.org/

1. I just began Jarrow CarniTall - that has the fumarte in it. Will that do? I've been taking for about 2-3 days now.

* Good start. 1-2 caps/day. It's likely in future you'll benefit by going to L Carnitine Fumarate only, which is also more cost efficient. (Dr.s Best, Source Naturals). For some, Acetyl Carnitine works. Not me.

2. I have the Jarrow mb12 5,000 mcg. - I took about 5 of them & dissolved under tongue for 45 minutes (Didn't Eric or Freddd say they took a large amount like that, or did I mis-read it?)

*Slow Down! Or you can start up histamine responses. Try 1, 2-3 times a day. Even that's a lot to begin.

3. I took about 4 Source Naturals dibencozide 10 mg. & dissolved under upper lip at the same time.

* You only need relatively tiny doses of AdB12, like 1/3-1/2 capsule/day

4. I took TMG which has 400 mcg. follinic acid in it - but now they're saying to NOT take follinic acid?
* Jarrow TMG has no additives. Folinic didn't work for me, or for many of us. In fact, the folinic in vegetables blocked Methylfolate for me, I had to stop the veggies to get my Mfolate needs under control.

5. I take Klaire Labs VitaSpectrum which has Metafolin and L-5 Methyltetrahydrofolate 400 mcg in it. Will that do?

*Good start. Now you'll need some plain Methylfolate, from Solgar, Life Extensions, Thorne, Nutricology.
http://www.iherb.com/search?kw=MTHF&x=0&y=0#p=1

From 400mcg. you can begin moving up, 1-200mcg every day or 2. If you purchase tablet form of one of those listed above, you can cut into pieces, to add small amounts at a time.

You may get histaminic symptoms, including anxiety, restlessness, itchiness, wheeziness, whatever your body throws up as symptoms. For me, immediately taking a 1mg MB12 has eliminated those symptoms, without fail. Others follow Dr Ben Lynch's advice and take B3/Niacin to dampen down the effects. I've not felt that useful, as my goal is to move forward.

This will allow you to continue raising your MethylB12 in harmony. there's a relationship between the 2, which can't be defined in numbers. You must track your symptoms and treat yourself this way. For me, I've stabilized at 15mg Mfolate, 25mg MB12, 3.3mg AdB12 daily. Plus 500mg LCF.

6. I attempted Rich V. protocol before & have Metagenics Intrinsic B12/ Folate which has folic acid & 5-methyltetrahydrolfolate with cyanobobalamin (which I think Fredd or Eric said isn't a good form. Is this correct?

* Foic acid is poison to you.

7. I was taking NuMedica B-Replete on and off which has L-methyltetrahydrofolate/ follinic 800 mcg.

* This looks like a reasonable low dose B complex, tho the folinic might block folate. Fred found that keeping the B complex quite low resolved some of the need for so much potassium I've settled on Swansons product (link below) which I divide into 2, so I'm taking approx 12mg B Complex early AM and midday. Freddd uses NatureMade B-complex with C.

https://www.swansonvitamins.com/swanson-ultra-activated-b-complex-high-bioavailability-60-veg-caps

You'll also need to have potassium, as this protocol will increase you potassium needs. With potassium, usually comes magnesium needs. I prefer NOW K+ gluconate as the most versatile form of potassium.

I take folate early AM, midday, evening; B12 early AM, after breakfast, midday. Good to have B12 near folate

As pela notes, all the symptoms you list are within the range of B12 deficiency symptoms. You don't mention the reason for surgery, but if it has to do with any of these issues, I'd be postponing it! Your sensitivity to mold is consistent with this.

I was vegetarian for 30 years. I was ready to leave this world because I could not bear living with my totally over-the-top nervous system by January 2012 when I sstumbled upon the GAPS diet. Gut and Psychology Syndrome. the name said it all. I was terrified, but started the diet. Within 3 days my nervous system had calmed. This was the beginning of my healing. If you are eating gluten and dairy, and it's very likely you have leaky gut, you are continually poisoning yourself.

You may well have sulfur intolerance amidst all your issues. I can't say. I didn't know of my own intolerance when I took MSM and it totally ramped up my already hyper nervous system.

During the last month, following a year of detoxxing, I've cleared my adrenals. I have finally solved my life-long quest to overcome irritability, agitation, low tolerance of frustration. I have a new temperament. And, I have moist skin for the first time in my life, instead of hyper-dry. I suddenly see how life can be without adrenals on hyper-alert.

saint, I look back from here and say IT ONLY TOOK ME 2 YEARS TO HEAL MYSELF AND CHANGE MY LIFE!!!

I'm linking an important vid re B12 deficiency for you and whatever drs you might consult. And another 3 minute vid to introduce you to the notion of self-testing. I could not have proceeded without self-testing for supplement doses. I do not rely on drs or their tests whatsoever. Drs have never known what to do, and pathology testing has never indicated the problems I suffered from.

Enough to get you started. Detox will be necessary, there are choices re how to proceed with that, but whast you need now is to stabilize and get comfortable. Best to you, ahmo

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=BvEizypoyO0

Self-testing http://www.youtube.com/watch?feature=player_detailpage&v=Ex59wHLk3Q0
Caledonia: Methylation Made Easyhttps://www.youtube.com/watch?feature=player_detailpage&v=o4uqEDK6BvM
Roadblocks to Successful Methylation:
http://forums.phoenixrising.me/index.php?attachments/roadblocks-to-successful-methylation-treatment-pdf.6827/

 

[saint]

Thanks for response. Good to hear that your adrenals healed - so there may be hope for me. Doc said I'd have to be on meds rest of life.

I will switch to the enzymatic therapy brand, & took the potassium today - but aching all over.

I can't stand the smell of meat - it makes me nauseous. There is no possible way I could touch it. Others mentioned a possible protein deficiency, so I did eat an egg today, but got sick on them months ago, and couldn't touch them. I did okay eating one today - but usually I can't eat them either. I did order low-carb brown rice protein, as I looked & saw folic acid in a brand I had & Freddd said folic acid not meant to take.

I appreciate your answers.

 

[saint]

@saint OK saint, you've got to slow down. As pela said, Jarrow is no longer the right B12. But don't go taking these things by the handful. You'll just ramp up your anxiety, and maybe some of the muscle/nerve symptoms as well.

I've been on GAPS diet 2.5 years and Freddd's Protocol for 1 year. I've essentially healed my decade-long ME/CFS.

I came across this vid fortuitously. The last 30" or so are an excellent calming meditation. I later purchased one of his for download, 2nd link. I've listened to many guided meditations, found this to be excellent.
http://www.youtube.com/watch?feature=player_detailpage&v=kFnLR9PLH8A
http://www.thehealingmind.org/



As pela notes, all the symptoms you list are within the range of B12 deficiency symptoms. You don't mention the reason for surgery, but if it has to do with any of these issues, I'd be postponing it! Your sensitivity to mold is consistent with this.

I was vegetarian for 30 years. I was ready to leave this world because I could not bear living with my totally over-the-top nervous system by January 2012 when I sstumbled upon the GAPS diet. Gut and Psychology Syndrome. the name said it all. I was terrified, but started the diet. Within 3 days my nervous system had calmed. This was the beginning of my healing. If you are eating gluten and dairy, and it's very likely you have leaky gut, you are continually poisoning yourself.

You may well have sulfur intolerance amidst all your issues. I can't say. I didn't know of my own intolerance when I took MSM and it totally ramped up my already hyper nervous system.

During the last month, following a year of detoxxing, I've cleared my adrenals. I have finally solved my life-long quest to overcome irritability, agitation, low tolerance of frustration. I have a new temperament. And, I have moist skin for the first time in my life, instead of hyper-dry. I suddenly see how life can be without adrenals on hyper-alert.

saint, I look back from here and say IT ONLY TOOK ME 2 YEARS TO HEAL MYSELF AND CHANGE MY LIFE!!!

I'm linking an important vid re B12 deficiency for you and whatever drs you might consult. And another 3 minute vid to introduce you to the notion of self-testing. I could not have proceeded without self-testing for supplement doses. I do not rely on drs or their tests whatsoever. Drs have never known what to do, and pathology testing has never indicated the problems I suffered from.

Enough to get you started. Detox will be necessary, there are choices re how to proceed with that, but whast you need now is to stabilize and get comfortable. Best to you, ahmo

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=BvEizypoyO0

Self-testing http://www.youtube.com/watch?feature=player_detailpage&v=Ex59wHLk3Q0
Caledonia: Methylation Made Easyhttps://www.youtube.com/watch?feature=player_detailpage&v=o4uqEDK6BvM
Roadblocks to Successful Methylation:
http://forums.phoenixrising.me/index.php?attachments/roadblocks-to-successful-methylation-treatment-pdf.6827/

Thank you very, very much for that. It is very encouraging that you were healed. I've been trying to piece this all together and learn from those who have healed from this.

My husband bought me the GAPS book, although haven't read it yet, and I started today trying to shift into a low carb diet.

The surgery took me too long to put everything in place, get the right dr., etc. and there is no way I can back out. It's a necessary surgery which is throwing a monkey wrench into the entire mess. Although, if my bloodwork doesn't come back right, they won't operate, so I need to get my system in at least some kind of working order. That's why I am a little - I guess - pretty much - stressed.

I do not eat gluten or dairy. I use coconut milk - except for cream in 1 cup of organic coffee a day.

When I first took the sulfur, it gave me a massive headache. I read this can be caused by detox. Then I tried it again, and I took it okay. I read it helps with leaky gut which I think I may have, as well as allergies. Maybe I should hold off on it for now. I didn't realize that histamine release was related to B12. I was really surprised at how many problems Freddd was able to find out it was linked to. Gave one of my kids a bottle today - of Jarrow unfortunately - so now have to buy new stuff.

I will print out your responses so I can read through them & watch videos tomorrow - pretty tired today.

Thank you so very much for that information.

 

[PeterPositive]

@ahmo

4. I took TMG which has 400 mcg. follinic acid in it - but now they're saying to NOT take follinic acid?
* Jarrow TMG has no additives. Folinic didn't work for me, or for many of us. In fact, the folinic in vegetables blocked Methylfolate for me, I had to stop the veggies to get my Mfolate needs under control.

How exactly did you realize that folates from veggies were blocking your methylfolate?
Through specific symptoms? Via bloodwork?

Do you have a double mutation of the MTHFR C677T?
Thanks

 

[maddietod]

@ahmo Why the assumption that we need L-carnitine? Also, why does it have to be in place before starting everything else? When I tried Freddd's protocol a few years ago, a single dose of L-carnitine resulted in a month of diarrhea.

"1. 1 capsule of L-carnitine fumarate on an empty stomach (available in about 400 – 800 mg capsules)
If there are no new negative start up symptoms (like feeling super hyped & wired) keep taking it every day.

If there are new negative start up symptoms (like feeling super hyped & wired), you’ll need to titrate up gradually until you’re comfortable with 1 capsule/day. That may mean taking 1/10 of a capsule. As your body gets use to having this long missing nutrient, you’ll gradually increase (titrate up) your daily amount to 1/5 capsule, then 1/2 a capsule etc. until you’re doing 1 capsule daily. You can take days or weeks to do this titrating. Don’t rush your body. When your body is use to 1 capsule of L-carnitine fumerate per day, continue that and start:"

 

[Leopardtail]

Sorry about that - but your read me well - I WAS panicking! i had a rough weekend - I had detoxed off of morphine & went on LDN, then pain flared terrible after a few days - I don't know why.

After reading through posts, I thought maybe the mb12 ab12 was causing me to regain feeling again, or I was healing, like what Freddd or Eric said happened to them.

I had surgery to repair nerve damage in August 2013 to try to repair damage done by a butcher doctor in 2005. It felt like someone was cutting me open in the incision on my stomach/ hip without anesthesia.

Then, my neck - where almost all of my fibro pain is, was going into acute spasms. I was miserable. I read through, and re-read through all the posts trying to figure it all out until I cried.

I'm having major surgery in a few weeks & I am not ready for it. I'm trying to get myself into some kind of better shape, so my stress level was so high I went back on morphine - figured they'll be putting me back on it in a few weeks anyway.

Thanks for your response.

1. I just began Jarrow CarniTall - that has the fumarte in it. Will that do? I've been taking for about 2-3 days now.

2. I have the Jarrow mb12 5,000 mcg. - I took about 5 of them & dissolved under tongue for 45 minutes (Didn't Eric or Freddd say they took a large amount like that, or did I mis-read it?)

3. I took about 4 Source Naturals dibencozide 10 mg. & dissolved under upper lip at the same time.

4. I took TMG which has 400 mcg. follinic acid in it - but now they're saying to NOT take follinic acid?

5. I take Klaire Labs VitaSpectrum which has Metafolin and L-5 Methyltetrahydrofolate 400 mcg in it. Will that do?

6. I attempted Rich V. protocol before & have Metagenics Intrinsic B12/ Folate which has folic acid & 5-methyltetrahydrolfolate with cyanobobalamin (which I think Fredd or Eric said isn't a good form. Is this correct?

7. I was taking NuMedica B-Replete on and off which has L-methyltetrahydrofolate/ follinic 800 mcg.

I WAS irritable, anxious, had muscle spasms, & insomnia (in spite of taking meds to make me sleep). I have magnesium/ pottasium krebs chelate - maybe because I didn't take that I was getting the spasms & neuropathic (nerve) pain - or maybe it was because my body was healing. In any event, I'll take the potassium mix today.

The list of symptoms of low B12 rang a bell: I have muscle spasms, & I can not tolerate any odors whatsoever. I'm a vegetarian, & if my husband cooks meat, I have to run the air cleaner & air the house out. I smelled mold in our bathroom & kept telling him & he didn't smell it. Finally he took the shower door off & there was a mold colony under the track. I smell every little odor.

Can I get your feedback on this?

I was also going through chills & then sweats - know that can be a sign of morphine detox as well, but I didn't see on the list of things. Have you come across this?

Also - what is your view on taking MSM? I read it helps with leaky gut - that I think I may have & also with allergies, which I have bad.

Thanks again for any help. Sorry for hyper message. I'm overwhelmed, and my fibro doc said I can't handle anything because I have no immune or adrenal function. I do alright until I get overloaded by a few things, then I can't handle; my system is so out of whack right now.

Did you cure from this? If so, can I ask how you did it? I'm trying to gather all the information I can to try to figure this all out. I've walked the path - I know doctor's don't have all the answers, (at least that's been true for me) and some doctors have none. And some are positively dangerous.

There are known issues with ME and anaesthetics not working. You need to make bloody sure you surround is ware of them before allowing further surgery. I also have issues (dental anaesthetics barely work and wear off making surgery quite painful). For me it has to be a general anaesthetic.

 

[saint]

Thanks. I haven't encountered this problem - I hope to God I don't. Already underwent 2 surgeries since sick, and didn't encounter a problem.

My biggest concern is the poor health of my immune system. Just don't know if my system is ready to withstand another shock. That's why I'm trying to fast-forward some kind of quick health building.

Has anyone ever tried "Goatein"? I got some because of possible issues others pointed out about low protein intake from being vegetarian.

I also was researching & came across "Goatein IM" (not sure if name is correct, but anyone can locate doing a search.

I thought it might help myself and others because it supposedly has "antibacterial, antiviral, and immune system enhancers". Supposed to be more tolerable than milk. Years ago - in biblical times - goat's milk was a staple in the diets of people.

Lot of people returning to "old wisdom" - like Paleo etc. - but if you read a little history on ancient tribes in Israel, they drank goat's milk.

Sorry to hear about your problems with anesthetics. At least general anesthesia works.

 

[saint]

Thank you very, very much for that. It is very encouraging that you were healed. I've been trying to piece this all together and learn from those who have healed from this.

My husband bought me the GAPS book, although haven't read it yet, and I started today trying to shift into a low carb diet.

The surgery took me too long to put everything in place, get the right dr., etc. and there is no way I can back out. It's a necessary surgery which is throwing a monkey wrench into the entire mess. Although, if my bloodwork doesn't come back right, they won't operate, so I need to get my system in at least some kind of working order. That's why I am a little - I guess - pretty much - stressed.

I do not eat gluten or dairy. I use coconut milk - except for cream in 1 cup of organic coffee a day.

When I first took the sulfur, it gave me a massive headache. I read this can be caused by detox. Then I tried it again, and I took it okay. I read it helps with leaky gut which I think I may have, as well as allergies. Maybe I should hold off on it for now. I didn't realize that histamine release was related to B12. I was really surprised at how many problems Freddd was able to find out it was linked to. Gave one of my kids a bottle today - of Jarrow unfortunately - so now have to buy new stuff.

I will print out your responses so I can read through them & watch videos tomorrow - pretty tired today.

Thank you so very much for that information.

Thank you very, very much for that. It is very encouraging that you were healed. I've been trying to piece this all together and learn from those who have healed from this.

My husband bought me the GAPS book, although haven't read it yet, and I started today trying to shift into a low carb diet.

The surgery took me too long to put everything in place, get the right dr., etc. and there is no way I can back out. It's a necessary surgery which is throwing a monkey wrench into the entire mess. Although, if my bloodwork doesn't come back right, they won't operate, so I need to get my system in at least some kind of working order. That's why I am a little - I guess - pretty much - stressed.

I do not eat gluten or dairy. I use coconut milk - except for cream in 1 cup of organic coffee a day.

When I first took the sulfur, it gave me a massive headache. I read this can be caused by detox. Then I tried it again, and I took it okay. I read it helps with leaky gut which I think I may have, as well as allergies. Maybe I should hold off on it for now. I didn't realize that histamine release was related to B12. I was really surprised at how many problems Freddd was able to find out it was linked to. Gave one of my kids a bottle today - of Jarrow unfortunately - so now have to buy new stuff.

I will print out your responses so I can read through them & watch videos tomorrow - pretty tired today.

Thank you so very much for that information.

Ahmo,

I'm still taking the CarnitAll, but placed an order for the fumarate. I just received the Enzymatic Therapy mb12 in today.

1. You said you only need relatively low doses of adb12 - but on the forum I think it said Freddd now recommends the mb12 and ab12 in a 1:1 ratio. Do you know how much of each that he takes?

2. If the Klaire Labs Vitaspectrum that I take has 400 mcg. of Metafolin, and 400 mcg. of L-5-Methyltetrahydrofolate in it, why do I need plain methylfolate? Is that different from the two forms in the Klaire Labs Vitaspectrum that I take?

3. Do you think that since the NuMedica Replete has follinic acid in it, I should not take it at all?

4. Can you tell me how much potassium you take? I'm taking Enzymatic Therapy Krebs mag/pot chelate - has 99 mcg. of potassium.

5. You said that after a year of detoxing, you cleared your adrenals. Can you please tell me what detox you used?

I would really appreciate your take on this.

 

[ahmo]

@PeterPositive

How exactly did you realize that folates from veggies were blocking your methylfolate?
Through specific symptoms? Via bloodwork?

Do you have a double mutation of the MTHFR C677T

As you'll see in my signature, I have compound hetero MTHFR: 2x hetero defects.

In fact, I first realized that I was having aderenal symptoms: puffy, sallow face, leaky eyes. I looked up folate/adrenals, saw only that folate is necess for adrenal health, reasoned I must be having too much, and quit the veggies. That really spun me out, pushing me into a very heightened detox phase. I'd been detoxxing steadily for 5 months, but this removal of cooked veg really changed things. I then went from 25mg Mfolate to 15mg, which I remain at after 3-4 weeks, with no deficiency symptoms.

You can read of my vegetable folate misadventures here: http://forums.phoenixrising.me/index.php?threads/high-dosage-methylfolate-users.29976/page-5

@madietodd

@ahmo Why the assumption that we need L-carnitine? Also, why does it have to be in place before starting everything else? When I tried Freddd's protocol a few years ago, a single dose of L-carnitine resulted in a month of diarrhea.

I can't answer your questions. I've had phenomenal success w/ Freddd's Protocol. Try it w/ the carnitine.

This might help:

http://forums.phoenixrising.me/inde...t-hole-insufficiency.22614/page-2#post-345537
“Following the newer version of the titration pattern then the steps look like this.

1 - Titrate AdoCbl/MeCbl combo to approximately 100mcg absorbed where healing can “turn on” with 200-800mcg of l-methylfolate. 200mcg will not be enough and will immediately (3 days) give “detox” symptoms composed of low potassium and donut hole folate insufficiency. If startup does not occur by the time one gets to 1000mcg combined absorbed cobalamins, titrate LCF

2- Identify low potassium symptoms and titrate potassium.

3 - Identify donut hole folate insufficiency and titrate with 4x-8x dose size of l-methylfolate several times a day until those symptoms are strongly diminishing.

4 - titrate AdoCbl and MeCbl to perhaps a nominal sublingual dose of 1000mcg each, watching for low potassium, donut hole folate insufficiency and identify any other new symptoms, and what isn’t being taken care of

5 - Finish titrating LCF to 500-1000mg for now, then identify what isn’t healing or not enough. Try SAM-e, TMG, D- ribose, Vit D, Zinc, B-vits and various things as needed to improve performance. It isn’t a try 1 thing and then another. It is add SAM-e and then TMG and various other things. It is usually combinations that yield results. SAM-e need titration over several months. LCF could take six months to titrate up to the 500mg dose and try 1000mg to see if it makes a difference. Don’t rush things. Think things through. Look at the symptoms and effective supplements for them to get ideas. Most people will fall into one of several groups. Almost everybody here has appears to have complicating factors and more severe things going on, with me it is SACD which is basically long term damage from prolonged deficiency. Hormones get all messed up and will often change during these titrations.. There isn’t a system of the body that is immune to damage from these deficiencies. As there are at least 600 reactions affected by the methylation and ATP the variations are huge in number.

6 - Titrate MeCbl separately until it makes no difference.

7 - Adjust potassium and l-methylfolate as needed by response to symptoms

8 - Titrate AdoCbl separately until maximum amount that makes a difference.

9 - Adjust LCF

10 - Adjust various factors.”

@saint

1. You said you only need relatively low doses of adb12 - but on the forum I think it said Freddd now recommends the mb12 and ab12 in a 1:1 ratio. Do you know how much of each that he takes?

I don't have the figures for what Fred takes at hand. I'm preparing a doc which is a compilation of his protocol w/ quotes from him, but that's a few days away. At one point he wasn't taking the AdB12 daily. I've now stabilized, by self-testing and symptoms, at 15 mg Mfolate, 25mg MB12, 3.3mg AdB12.

2. If the Klaire Labs Vitaspectrum that I take has 400 mcg. of Metafolin, and 400 mcg. of L-5-Methyltetrahydrofolate in it, why do I need plain methylfolate? Is that different from the two forms in the Klaire Labs Vitaspectrum that I take?
These both seem to be the correct forms. In which case, you're getting 800mcg Mfolate.
http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/
L-Methylfolate, Methylfolate, 5-MTHF, L-5-MTHF. What is the Difference!?

3. Do you think that since the NuMedica Replete has follinic acid in it, I should not take it at all?
I don't know anything about this product. You'll have to check it out.

4. Can you tell me how much potassium you take? I'm taking Enzymatic Therapy Krebs mag/pot chelate - has 99 mcg. of potassium.
I'm typically taking 1600mg K+ AM/PM. that's baseline. Easy to need more than that w/ detox or stress. [edited for accuracy: I have, yet again, misstated my K+ dose. I've just checked the bottle. What I'm actually taking is closer to 750mg K+ twice a day.]

5. You said that after a year of detoxing, you cleared your adrenals. Can you please tell me what detox you used?
Starting point is GAPS diet, including bone broth, fresh carrot/lettuce juice, chlorella. Plus footbaths w/ clay, charcoal, Bicarb. Eventually oral clay, diatomaceous earth. Then intensive coffee enema protocol. I'm preparing a doc describing my methods and progress.

 

[maddietod]

@ahmo I did Freddd's protocol in 2012, but the L-carnitine produced diarrhea that didn't resolve for a month.

 

[ahmo]

@madietodd My message to you has a speed-typing error. I meant to type, try it w/o the carnitine. Truth is what works. Don't let the carnitine prevent you from trying the rest of the protocol.

 

[saint]

@PeterPositive
As you'll see in my signature, I have compound hetero MTHFR: 2x hetero defects.

In fact, I first realized that I was having aderenal symptoms: puffy, sallow face, leaky eyes. I looked up folate/adrenals, saw only that folate is necess for adrenal health, reasoned I must be having too much, and quit the veggies. That really spun me out, pushing me into a very heightened detox phase. I'd been detoxxing steadily for 5 months, but this removal of cooked veg really changed things. I then went from 25mg Mfolate to 15mg, which I remain at after 3-4 weeks, with no deficiency symptoms.

You can read of my vegetable folate misadventures here: http://forums.phoenixrising.me/index.php?threads/high-dosage-methylfolate-users.29976/page-5

@madietodd
I can't answer your questions. I've had phenomenal success w/ Freddd's Protocol. Try it w/ the carnitine.

This might help:


@saint

@PeterPositive
As you'll see in my signature, I have compound hetero MTHFR: 2x hetero defects.

In fact, I first realized that I was having aderenal symptoms: puffy, sallow face, leaky eyes. I looked up folate/adrenals, saw only that folate is necess for adrenal health, reasoned I must be having too much, and quit the veggies. That really spun me out, pushing me into a very heightened detox phase. I'd been detoxxing steadily for 5 months, but this removal of cooked veg really changed things. I then went from 25mg Mfolate to 15mg, which I remain at after 3-4 weeks, with no deficiency symptoms.

You can read of my vegetable folate misadventures here: http://forums.phoenixrising.me/index.php?threads/high-dosage-methylfolate-users.29976/page-5

@madietodd
I can't answer your questions. I've had phenomenal success w/ Freddd's Protocol. Try it w/ the carnitine.

This might help:


@saint

Thanks for your response. Can you please let me know when you have the information from Freddd compiled, as well as your own?

If you're stabilized at 15 MGs of Mfolate and I'm only taking 800 mcg. a day, how do you know if you need more?
If you're taking 1500 mg. of potassium 2x day, then it seems like the dose I'm taking is way too low.

 

[ahmo]

@saint, you really need to proceed by symptoms. there's no other reliable way. That includes K+ deficiency. If you're low potassium, you might feel breathless, heart racing or pounding, light-headed. If you're working up your folate doses, deficiency symptoms tend to be related to skin. Also anxiety, irritability. For me, it was scabs on head, acne. For Freddd, first symptom tended to be cracks at sides of mouth. You'll need to find and watch your own symptoms cluster(s), and begin to distinguish them from other sorts of symptoms you might be having, ie. related to your needs for surgery.

You might get some insights here:
http://forums.phoenixrising.me/inde...bout-methylation-treatment.26102/#post-399702

 

[Valentijn]

As you'll see in my signature, I have compound hetero MTHFR: 2x hetero defects.

If you got your results from 23andMe, you can't know if you're compound heterozygous or not. That would require getting one mutation from one parent, and the other mutation from the other parent. But 23andMe puts alleles in alphabetical order, rather than showing which allele comes from which parent.

So you might be compound heterozygous, resulting in 30% of normal gene activity, or you might get both mutations from the same parent, resulting in 65% of normal gene activity. Though in either case, folate is probably helpful

 

[ahmo]

@Valentijn Thanks for clarifying. I thought that +/- for both MTHFR C677 and A1298 = "compound hetero." In any case, I've got one of each, and have been severely impacted throughout my life.

 

[PeterPositive]

@Valentijn Thanks for clarifying. I thought that +/- for both MTHFR C677 and A1298 = "compound hetero." In any case, I've got one of each, and have been severely impacted throughout my life.

Actually I understand it the same way. I think I've heard Dr Ben Lynch refer to "compound heterozygous" the same way, when you have one mutation at position 677 and one at 1298 of the MTHFR gene

 

[Valentijn]

Actually I understand it the same way. I think I've heard Dr Ben Lynch refer to "compound heterozygous" the same way, when you have one mutation at position 677 and one at 1298 of the MTHFR gene

Nope, only when on opposite strands for MTHFR. If they're both on the same strand, the other strand functions normally. With specific MTHFR testing, they can probably tell you if it's compound or not, but with 23andMe all you know for sure is that there's a 50/50 chance it's compound.

If you have your parents 23andMe results, you might be able to figure out if it's compound or not. But either way, heterogenous MTHFR C677T has a significant impact on methylfolate production.

 

[PeterPositive]

@Valentijn thanks for the clarification.

 

[saint]

@saint, you really need to proceed by symptoms. there's no other reliable way. That includes K+ deficiency. If you're low potassium, you might feel breathless, heart racing or pounding, light-headed. If you're working up your folate doses, deficiency symptoms tend to be related to skin. Also anxiety, irritability. For me, it was scabs on head, acne. For Freddd, first symptom tended to be cracks at sides of mouth. You'll need to find and watch your own symptoms cluster(s), and begin to distinguish them from other sorts of symptoms you might be having, ie. related to your needs for surgery.

You might get some insights here:
http://forums.phoenixrising.me/inde...bout-methylation-treatment.26102/#post-399702

It seems to confuse me more - but I can appreciate what you are saying about following your symptoms. My husband has been trying to get me to do that for a long time. I have done it on and off, but it looks like there's no easy way. I get vitamin K in a 25,000 dose of D3 I take about 2x week.

One of my kids took the Jarrow mb12 and got a terrible headache from. Maybe I have to read through everything again to try to get it right. It's so hard, and I'm so weary of it.

 

[ahmo]

@saint, I have, yet again, misstated my K+ dose. I've just checked the bottle. What I'm actually taking is closer to 750mg K+ twice a day. It's pretty easy for me to need more, but this is basically half of what I initially wrote.

I have no insights about the headache and Jarrow B12, but I do know that Freddd and others have reported that 1-2 years ago the Jarrow formula changed and it was no longer the best one for us to use.

It's likely you'll need stand-alone K+ to help you through this methylation stuff. This is a very exhausting learning curve. It's one we've each had to travel in order to repair broken systems that only the rarest of practitioners can help us with. It's far more important that you start writing down your symptoms daily so you can track and differentiate them, than staring at mind-numbing lists.