Views on B12--Greg (B12 oils) view vs Rich Van's view--Thoughts?

[Kathevans]

@Athene* Thank you for the magnesium oil recommendation. I can see the post just fine. That looks like a good magnesium source and I do still find that I need a fair amount of magnesium. I've stopped the baths for the moment, only because I've been using what one of my doctors called a detox bath that was a bottle of Hydrogen peroxide - 3%, I think, along with a box of baking soda - to keep your skin from getting too dry. It's very helpful for the itchiness/eczema-like spots I've developed from the B-12 Oils (if it isn't one thing, it's another).

My insomnia is ever-present--or what has been my erratic sleep. If I'm lucky I get around 4-6 hours a night in two bunches. And I continue to fiddle. The biggest need I had to address was the B1 deficiency. It helped a lot, particularly with heart issues and calf pain and discomfort. But having done that, I can't seem to 'feel' my way to a right dose. It doesn't seem to drive up my folate need. Though who knows. I have so many issues with the IBS that many days it is with me constantly. But each time I try to lower the two doses of Adenosyl/methyl oil I use, I end up having horrible stomach and intestinal pains that go away with the extra doses; same thing with lowering and raising folate (and pain comes and goes with this, too). It seems as if my body is using what I'm putting in. And for the moment I'm using about 400mg, or about a half a tablet of the Doctor's Best LCF.

I've been addressing gut issues as well, thinking that if I can improve that, I might not need so many of all the supps.

And then there's my mouth, half done with the amalgam removal, some bridge work done, and fine porcelain teeth. Except the bite has been off and I keep chewing the side of my mouth--sometimes even when I'm talking. Good grief! I'm trying to get an appointment to have that fixed, which might mean jaw trauma all over again from the novocaine and all the open mouth stuff, plus it's an hour drive to the dentist. Sometimes I almost fall asleep driving home afterwards.

All of it, for the moment, is a little overwhelming.

I'll chime in again when I get my head above water.

 

[xrayspex]

Hi @Kathevans


Still haven't had the surgery (minor, but needs general anaesthetic) I'm being advised to have. I'm too frightened to risk it in this condition. I feel completely controlled by B12 and the multiple other supplements, injections, transdermal magnesium etc. I'm beginning to wonder how I'm going to keep it all going and am feeling very low about it all. I suppose I need to remember I was bed bound when I started this in late 2014.

Maybe I'm missing some other nutrient but have no idea which one since I'm taking the lot (everything @Freddd recommends and in the amounts he recommends). It could be a week before I figure it out, it could be months. You know how it is.

This new year is making me realise how life continues to pass me by. I'm sure you and others here are having your own struggle with this life destroying, intractable illness.

On a positive note, I had lots of energy for a few weeks around Christmas and got out and about regularly, walking, going for coffees, visiting etc, with no PEM. It was fantastic. Then I wanted to be able to walk further and build muscles up so I began to titrate Ado & LCF and here I am back to square one. I'm going to have to cut back the tiny amounts of Ado & LCF even more now. I can't possibly continue with this amount of potassium.

hey Athene I was researching magnesium and came upon this thread. I was intrigued to your surgery reference. i am looking into and considering a spinal surgery---have looked into it intermittently the last 20 years--but have been reluctant due to my chemical sensitivities etc It was validating to hear you acknowledge you see surgery as "risky" with these sort of issues--it might seem obvious to some but folks that take their heartiness for granted don't always understand the caution. I am curious if you have thought of some ways you think you could mitigate some of the potential detriments from surgery? I don't know if the main stream health care system would care about something like the info in 23&me and using genetics or other info to modify how they might apply anesthesia etc
Its frustrating to feel like there are no options to seek medical interventions that might help other conditions.

 

[CCC]

I'm so sorry for missing this (I saw it, meant to come back later, then forgot).

The molybdenum was 100mg a day for a few days - just whatever the Solgar tablet was. We've never needed it before or since, so something was happening there.

We're very careful with zinc, having crashed copper a few years ago (thanks to trusting doctors and before we came here to know about these things). I now have a mixture of zinc, B6 and magnesium that metagenics used to make in 'zinc drink' - our local chemist makes it now because metagenics changed the formulation and droped out the B6 and Mg. At most, we take 1ml of of solution in a small glass of water, and then not every day.

@CCC I stopped the LCF a couple of weeks ago, thinking that there were other more serious deficiencies. I will say that though I didn't experience any of the above symptoms, my sleep was all over the place, and nothing seemed to resolve my IBS. So, at this point my current focus is on a B6 deficiency, which does slow the gut down--for the moment. But who knows. Only testing can tell me for sure (which I will try to attend to over the next month).

I think the high folate I took for quite a while may have driven other things out of wack, things that might have been borderline in the first place. The B1 was definitely an issue; taking lat fall resolved heart irregularities pretty much completely. Though how long I'll keep it high--at 150mg Benfotiamin/day--I don't know. Greg always says it takes a month to replete things.

Maybe @Eastman can chime in on this as you seem to know more about the lesser Bs. Or is it more a B1 thing?

 

[Kathevans]

@xrayspex @Athene* Actually, the discussion we were having related to the use of anesthesia containing nitrous oxide and the effect it has of wiping out B12 stores in the body. See the National Institute of Health paper here: https://www.ncbi.nlm.nih.gov/pubmed/8250714

Google the connection. I don’t nderstand why some doctors don’t get it.

In my twenties I had nitrous oxide for the removal of wisdom teeth and had a relapse of an anxiety disorder I had developed after having root canal work done. At nineteen, three teeth with amalgam fillings were unsafely removed, and within three months I had a severe anxiety disorder that persisted for a couple of years. Mercury highjacks B12

To think so much of this had to do with B12. And my teeth.

 

[CCC]

Oops -replied to the wrong person. My apologies @Athene*

I'm so sorry for missing this (I saw it, meant to come back later, then forgot).

The molybdenum was 100mg a day for a few days - just whatever the Solgar tablet was. We've never needed it before or since, so something was happening there.

We're very careful with zinc, having crashed copper a few years ago (thanks to trusting doctors and before we came here to know about these things). I now have a mixture of zinc, B6 and magnesium that metagenics used to make in 'zinc drink' - our local chemist makes it now because metagenics changed the formulation and droped out the B6 and Mg. At most, we take 1ml of of solution in a small glass of water, and then not every day.

Interesting about the zinc & molybdenum. I must check my doses of those again. How much zinc & molybdenum do you usually take?

I'm so sorry for missing this (I saw it, meant to come back later, then forgot).

The molybdenum was 100mg a day for a few days - just whatever the Solgar tablet was. We've never needed it before or since, so something was happening there.

We're very careful with zinc, having crashed copper a few years ago (thanks to trusting doctors and before we came here to know about these things). I now have a mixture of zinc, B6 and magnesium that metagenics used to make in 'zinc drink' - our local chemist makes it now because metagenics changed the formulation and droped out the B6 and Mg. At most, we take 1ml of of solution in a small glass of water, and then not every day.

 

[Athene*]

Thanks @CCC I use that same Solgar molybdenum daily. I use Solgar zinc chelate form 1.5 tabs daily = 33mg. Have no idea what my copper status is, but I do worry about it. My ferritin is very elevated (tested about 6 months ago), another concern. All my other iron labs tend to be low normal, just about in range. I'm hoping it's to do with inflammation and that my titration of Ado will help bring inflammation down, as @Freddd mentions.

I'm now on 5mg Ado daily and then once weekly 5 full 10mg tabs in a row for CNS absorption. It has meant having to increase folate and potassium again but it's manageable. LCF is now 100mg daily.

I do notice that I need several injections of Meb12 before and after the Ado with several hours in between the B12 and Ado, otherwise I lose all my Meb12 (pink urine). If I space it out, I don't lose the Meb12 in the urine and I don't get low folate symptoms either.

The Ado really does cancel out the Meb12 for me (and along with LCF eats folate!) and that's why I switched from the Meb12/Ado oil mix to injections with Ado sublinguals.

Having said all that was it Ado you were struggling with or LCF? I have found them both to be difficult to get into my system but I'm getting there.

 

[Athene*]

hey Athene I was researching magnesium and came upon this thread. I was intrigued to your surgery reference. i am looking into and considering a spinal surgery---have looked into it intermittently the last 20 years--but have been reluctant due to my chemical sensitivities etc It was validating to hear you acknowledge you see surgery as "risky" with these sort of issues--it might seem obvious to some but folks that take their heartiness for granted don't always understand the caution. I am curious if you have thought of some ways you think you could mitigate some of the potential detriments from surgery? I don't know if the main stream health care system would care about something like the info in 23&me and using genetics or other info to modify how they might apply anesthesia etc
Its frustrating to feel like there are no options to seek medical interventions that might help other conditions.

[QUOTE="xra

Hi @xrayspex According to @Freddd the nitrous oxide anaesthetic (which @Kathevans links to below) effects can be avoided by injecting Methylb12 before and after surgery, in high doses. However, in my case and for many others here, we are having difficulty getting Meb12 into the tissues in the first place (a whole host of cofactors needed), and after an op it would be even more difficult when the body is so stressed.

I have good phases when everything works and then another nutritent deficit reveals itself (like the magnesium) and I crash again. When that happens my thyroid function drops, my iron drops, because of B12 & folate not staying in tissues. Even having low thyroid function and iron alone is enough to slow down healing considerably so it's the healing I worry about post-op, not just the danger of general anaesthetic to a b12 deprived brain which I'm still trying to fix...

Best of luck. I hope you find your way through safely. You're right to be wary. I'm going to have to bite the bullet some day and have the surgery. For now I'm hoping to improve my general health first so that I have some hope of healing well post op. I do find the idea of general anaesthetic at this stage very worrying indeed.

P.S. No point in explaining about genetics 23&me to the consultants or doctors I've met. I might as well be talking to the wall. It's not part of their protocol so they're not interested. When I find a consultant who allows me to meet with the anaesthetist I might get further. Unbelievably, my request to meet with anaesthesiologist has been ignored so far. I'm told I can talk to him/her just before op when I come into hospital. That's too dodgy for me. I want a consultation before I go into hospital. You would think this wouldn't be a big ask...

 

[Kathevans]

@Athene* and @CCC I'm also taking the 33mg zinc in 3 divided doses, and just last summer added the Bodybio Copper drops. At 12 drops/day, I'm only getting 1.5mg of Copper, which may or may not be enough. My functional medicine doctor said that the zinc/copper ratio related to heart arrhythmias, and I did find that adding it (slowly, as always!) made my afib substantially disappear. I occasionally have an episode when I've titrated down and am adding back something my body sorely needs--this occurs only the first night of rapid increase of the supplement--it's happened with B1 and, most recently with Folate. So, heart arrhythmias and IBS and insomnia are my big symptoms.

I am still working on exactly how much folate and how much B1 I need. The symptoms seem to be so similar. A lot of muscular weakness, particularly in my upper back (it feels as if I'm not strong enough to hold myself up) and back pain (my left shoulder blade can be excruciating--and has recently appeared again after being gone for the first year or so of B12/folate supplementation). My calves went from sore and achy to fine and now the right one is sore again, right down to my Achilles tendon. But is that Folate or B1? This particular pub med piece reports on the SLC19A (and frankly, I have some, but would have to look up exactly which) gene which relate to both folate and thiamine transport. I suppose I could take an hour or two and do more due diligence on this...(next time I have an extra hour or two!) I do have SLC19A1 +/+ (G;G) which relates to folate metabolism ; but my SLC19A2, related to Thiamine is (G;G) not the (A;A) Risk Allele. So, most likely more folate rather than more thiamine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831518/

I can see that it takes a long time, sometimes, to sort out what is doing what by body-feel. But I'm hanging in there.

I've been largely holding the LCF to 400, or roughly 1/2 a tablet a day in 2 divided doses of 200 each, sometimes 100x4. Right now it's still making me very tired, though too much of it still makes me feel 'weird' and sort of 'yucky'. If those words mean anything to you! I can take it in the middle of the night --usually at 50-100mg--and it can put me back to sleep for 2-3 hours. I still haven't reached the point of waking up refreshed. I wonder what that might feel like! I am still stretching, though. My primary symptom of needing the LCF seems to be chills. At first I thought they were caused by it, but now I think they mean I need more. Which is not to say I won't change my mind!

For now, I seem to need at least 2 squirts of the Adenosyl/Methyl Oil and one of the Methyl each day. I keep my potassium to a fairly regular 4x 525 doses each day. That's 3 x1/2 teaspoon in each dose of the NOW Gluconate Powder.

 

[Athene*]

Interesting, thanks, @Kathevans I've been half thinking of trying active form of thiamine again though maybe smaller doses this time. Last time it crashed me.

I'm improving a lot on @Freddd's protocol but have only got so far with the exercise rehab. I can get to end of my street and another street and home again but any more than that and I have very low folate and potassium symptoms within hours and next day, despite the usual massive supplementation. i'm also having gallbladder/pancreatic insufficiency symptoms (possible B1 connection?).

Still I was completely stuck to the bed before I began this two years ago (that feeling of not being able to support my own weight (you mention) made it difficult to even sit up and I couldn't lit my arms).

Feeling those chills by the way is apparently related to b12 and its effect on thyroid but anything that stops ATP generation for me, for whatever reason or insufficiency makes me icy cold very quickly.

After I read your post I checked on 23andme and I am homozygous (AA) for rs2038024 one of the SLC19A2 snps which appears to be particularly impact absorption of B1. The thing is sometimes 23and me 'AA' is not 'AA' on other programs. Which program do you use? I wonder if I can rely on this as an indicator?

 

[Kathevans]

@Athene* Though I haven’t gotten on the site recently, I’m sure I also checked these snps further by running my 23andme data through the Promethease.com app. The site directs you how to allow their app to connect to 23andme data for a fee of $5.00 for a three month period. This was certainly within the last year, though it’s possible the price has gone up a bit.

As to thiamine, I’ve had the easiest time assimilating the Benfotiamin, and divide a 150 mg tablet into 4 doses. The Allithiamin, which I think uses an allicin/garlic derivative upset my stomach after a week or two.

Interesting about the chills. I was reading that LCF can have an effect on thyroid, as well (reading Self-hacked),so that may relate precisely to what you say. I’m still holding the dose to about 200mg 2x/day, but continue to experiment...It certainly also aggravates the itchy spots on my skin where I use the B12 oils. And I do rotate these areas...

 

[Athene*]

Thanks for that @Kathevans I'll give Promethease a try. All along I thought it was Allithiamin I had tried and turned out I had ordered Benfotiamin that time last year (and the coenzymated B1 sublingual from Source Naturals) - I checked back through my orders. I seem to remember trying both of them for a couple of weeks and now of course I can't say which one increased the potassium need!

Do you take both Allitihamine and Befotiamin or have you switched to Benfotiamin now? I've been reading Lonsdale and he's saying the Allithiamin corrects electrolyte imbalance and increases potassium which is the opposite of what @Freddd says about thiamin. But if one has a dodgy transporter for B1 it's a whole new ballgame... (Edit - the only serious thiamin transporter problems I can find seem to occur in infancy...)

It's really quite overwhelming the whole missing/malfunctioning transporter issue. No doctors here are interested (surprise, surprise). From my genome, OAT, blood tests etc, I have difficulty absorbing, transporting or recycling any folate or B12. And possibly B1 now. And only sublingual B2 & B6 so who knows what's going on with that.

From yours and others' experience of insomnia and IBS with allithiamin I'm dreading trying it, but may have to. Thanks again for highlighting all this.

Hope the Benfotiamin is absorbing well for you and that it corrects the electrolytes like Allithiamine seems to have done for your heart symptoms. What a relief that must have been.

 

[Athene*]

@Athene* and @CCC I'm also taking the 33mg zinc in 3 divided doses, and just last summer added the Bodybio Copper drops. At 12 drops/day, I'm only getting 1.5mg of Copper, which may or may not be enough. My functional medicine doctor said that the zinc/copper ratio related to heart arrhythmias, and I did find that adding it (slowly, as always!) made my afib substantially disappear. I occasionally have an episode when I've titrated down and am adding back something my body sorely needs--this occurs only the first night of rapid increase of the supplement--it's happened with B1 and, most recently with Folate. So, heart arrhythmias and IBS and insomnia are my big symptoms.

I am still working on exactly how much folate and how much B1 I need. The symptoms seem to be so similar. A lot of muscular weakness, particularly in my upper back (it feels as if I'm not strong enough to hold myself up) and back pain (my left shoulder blade can be excruciating--and has recently appeared again after being gone for the first year or so of B12/folate supplementation). My calves went from sore and achy to fine and now the right one is sore again, right down to my Achilles tendon. But is that Folate or B1? This particular pub med piece reports on the SLC19A (and frankly, I have some, but would have to look up exactly which) gene which relate to both folate and thiamine transport. I suppose I could take an hour or two and do more due diligence on this...(next time I have an extra hour or two!) I do have SLC19A1 +/+ (G;G) which relates to folate metabolism ; but my SLC19A2, related to Thiamine is (G;G) not the (A;A) Risk Allele. So, most likely more folate rather than more thiamine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831518/

I can see that it takes a long time, sometimes, to sort out what is doing what by body-feel. But I'm hanging in there.

I've been largely holding the LCF to 400, or roughly 1/2 a tablet a day in 2 divided doses of 200 each, sometimes 100x4. Right now it's still making me very tired, though too much of it still makes me feel 'weird' and sort of 'yucky'. If those words mean anything to you! I can take it in the middle of the night --usually at 50-100mg--and it can put me back to sleep for 2-3 hours. I still haven't reached the point of waking up refreshed. I wonder what that might feel like! I am still stretching, though. My primary symptom of needing the LCF seems to be chills. At first I thought they were caused by it, but now I think they mean I need more. Which is not to say I won't change my mind!

For now, I seem to need at least 2 squirts of the Adenosyl/Methyl Oil and one of the Methyl each day. I keep my potassium to a fairly regular 4x 525 doses each day. That's 3 x1/2 teaspoon in each dose of the NOW Gluconate Powder.

Could the upper back and shoulder blade pain possibly be acid reflux @Kathevans? I always got upper back pain with acid reflux (not since high dose folate & b12 & b2) as it would burn through to my back and under my left shoulder blade oddly enough. For years I thought it was some kind of lung infection (and of course doctors treated it as such with several antibiotics - no X-ray - and I was naive enough to take them, worsening the reflux big time).

Weakness (not being able to hold myself up even sitting up or being able to raise my arms), is low potassium and folate for me, e.g. when I crash from PEM or from eating vegetable folate, then I start to lose my B12 as well (pink urine) and have the low B12 symptoms following (burning feet, sharp pins and needles, ear pain like electric shock, lots of odd electrical stuff). Who knows, maybe thiamin is needed too. How on earth are we going to sort it all out ?

Btw, Lonsdale says avoid sugar in all its forms if one is thiamin deficient. But we both seem to benefit from sublingual B2 only and doesn't it have artificial sugars in it?
'Sorbitol, mannitol, natural peppermint flavor, and magnesium stearate'.

Lonsdale advises B1 and B complex injections initially, then later Allithiamin orally (sometimes up to 8 daily). But all those BComplex injections contain Hydroxocobalamin and folic acid...I really hope I don't need B1. Knowing my luck I probably will.

@alicec Are you still signing in here these days? Didn't you try allithiamin too? Was it a transporter issue for you?

 

[garyfritz]

We're very careful with zinc, having crashed copper a few years ago (thanks to trusting doctors and before we came here to know about these things).

I should probably be more careful about that. I take 50mg/day as part of the Cutler "Core Four" regimen. I'll wean myself off it as I get the mercury out, but in the meantime what should I watch out for?

Btw, Lonsdale says avoid sugar in all its forms if one is thiamin deficient. But we both seem to benefit from sublingual B2 only and doesn't it have artificial sugars in it?
'Sorbitol, mannitol, natural peppermint flavor, and magnesium stearate'.

FWIW they're not artificial - they appear in various stone fruits and berries - but they are "sugar alcohols." I'm no chemist but I think that means they're chemically similar to glucose but slightly different. They metabolize slower, might not be absorbed as well in the gut, etc.

 

[Kathevans]

@Athene* actually, I don’t take the sublingual B2 as the artificial sweetener instantly causes the mucus in my throat to get worse. This, of course, sometimes makes me wonder if I’m getting enough of the B2. But my pee is greenish, so I guess I’m copacetic! Tank you for the thoughts on reflux and the left shoulder blade stuff. It sounds identical to my excruciating pain. However, recently that particular pain has been better, even as the mucus in my throat has gotten worse as I’m taking some extra potassium at night due to increased need from the carnitine...

This is all a bit overwhelming...

@garyfritz How are the teeth going? I have one half my mouth completed, though I’m going through a bit of misery with a misaligned bite, chewing in my cheek. One more root canal to be pulled, and a couple more caps removed and redone. Another three to six months, depending on if I can get the left side up and chewing...

 

[garyfritz]

@Kathevans, the mercury has been out since December, and I'm into the chelation process. I also had a root canal pulled and I got a zirconia screw (implant) installed a few weeks ago. The only work I have left is getting the crown, but that has to wait for the screw to "set" for a few months.

 

[Kathevans]

@garyfritz Most of all I'll be interested to hear if your high need for B12 will slowly diminish...You've needed a lot of it as I recall. Are you also taking high folate?

Is it the cutler Protocol you're doing? Are you posting your experiences on another site? (I'd follow once I get to that place myself) Good luck with all of it!

 

[Athene*]

@Athene* actually, I don’t take the sublingual B2 as the artificial sweetener instantly causes the mucus in my throat to get worse. This, of course, sometimes makes me wonder if I’m getting enough of the B2. But my pee is greenish, so I guess I’m copacetic! Tank you for the thoughts on reflux and the left shoulder blade stuff. It sounds identical to my excruciating pain. However, recently that particular pain has been better, even as the mucus in my throat has gotten worse as I’m taking some extra potassium at night due to increased need from the carnitine...

This is all a bit overwhelming...

@garyfritz How are the teeth going? I have one half my mouth completed, though I’m going through a bit of misery with a misaligned bite, chewing in my cheek. One more root canal to be pulled, and a couple more caps removed and redone. Another three to six months, depending on if I can get the left side up and chewing...

Agreed, it's all getting overwhelming and from @Freddd 's post yesterday about his 15 yrs of extremely complex re-feeding experience I'm not sure I'm going to be able for it. In this country we can't even get cellular vitamin tests, never mind copper, ceruloplasm etc which GP refuses to do and which cost hundreds of euro each to do privately. It's a fight to get regular blood count and plain old thyroid & liver, kidney & bone profile etc and when I do I'm more often than not just under the normal range for red blood cell count and haematocrit.

When I get the refeeding right for a week or two (before the next block comes along) I manage to get just inside the normal range for red cell count and hct. MCV has come down a lot though which is something. Then again that could be simply because iron is a bit low (just inside range), rather than a real improvement from B12 & Folate. I do like to see that red cell count going up though, even sometimes.

The damn potassium remains at 4.2 on testing even with 5K ingestion of pills daily (can't even use the more efficient potassium powder because not guaranteed gluten-free). Potassium is such a re-feeding tyrant, can't go an hour without being reminded of it.

About the IBS, I get that when low in potassium in particular (and reflux from low folate & b12). Perhaps the Benofotiamine has increased your need for potassium whereas the Allithiamin doesn't? I could be wrong - it's anecdotal stuff I've come across over past few days re Allithiamin & potassium need not being so bad compared with ordinary B1 or Benfo. Magnesium and B2 are the other ones to watch out for with B1 intake but you know that already.

Btw @alicec did some very informative posts on thiamine a while ago which don't come up on forum search. I must try google search.

 

[garyfritz]

@garyfritz Most of all I'll be interested to hear if your high need for B12 will slowly diminish...You've needed a lot of it as I recall. Are you also taking high folate?

It already has!! My B12 hunger dropped by half, literally overnight, when I started Cutler's Core Four. That was one of my big clues that my issue really was mercury, and it gave me incentive to do the dental work. Then it kept diminishing as I got the amalgams out -- until it was nearly zero at the end. I never used to be able to reduce my dose below 3 squirts a day, but now I've gone as much as a week with NO B12 at all!!

Once I started chelating, I started needing some B12 again, though not as much as before. I think my need went down when I got the mercury out of my mouth, thereby stopping the constant influx into my system. But the chelation stirs up the mercury that's already there, so I need some B12 to protect me from that. (They say mercury is like an arrow -- it does damage going in, and it does damage coming out. But you gotta get it out.)

No, I never seemed to need supplemental folate.

Is it the cutler Protocol you're doing? Are you posting your experiences on another site? (I'd follow once I get to that place myself) Good luck with all of it!

Yes, I'm following Cutler's protocol. There's a Cutler support group, unfortunately hosted in Facebook. I think it's an awful base for a hyper-active group like this (it's grown from about 10,000 to 30,000 members in the last year!!!), but that's what we've got. Cutler used to hang out there and answer questions, but sadly he died last year. Search FB for "chelation".

 

[Kathevans]

@Athene I do appreciate your symptoms descriptions! I don’t know how else we ever figure this out, especially, as you say, when it is so hard to get the testing done. I wasn’t aware of the possible potassium need difference between the Allithiamin and the Benfotiamin. I’ll have to experiment further.

I am still in my carnitine experiment, and have found, as I’ve said, not only a big and very neurological response to the LCF, but also a lot of insomnia, agitation and bowel symptoms when I try to remove it. Interestingly , on the only OAT test I did about three years ago, there are several markers that show a high need for carnitine. I was at the beginning of all this then, though, and only recognized in Fred’s protocol, a way of getting to it. Again last night, after trying to hold the dose down to 200 mg/ day to help lower potassium needs, I was forced to take an additional 50mg, and yet another 50mg, along with two doses of high potassium 525mg/ dose, to settle my gut, my heart, and my insomnia.

I will increase the dose to 400mg again today. Interestingly in my googling yesterday I came across an NIH study that showed a reduction in the activity of clostridium difficile in the presence of carnitine. This was in mice, of course. And in other studies, lots of healthy, strengthening activity, not only in mice, but humans, as well...!

It’s taken me a while to get here.

As you say, though, there are improvements on the methylation protocol. I had a recent stool test which shows no yeast, and a reduction of all the bacterial markers over two years ago...only in the yellow now, not in the red!

Time will tell.

@garyfritz This is all heartening and makes me impatient to have the dental work completed. But still nervous given I still don’t feel as comfortable chewing on the left as the right...where the last root canal remains to be pulled. I definitely have an issue with folate, though still am not clear exactly how much I need. Interestingly, the core four didn’t make a huge difference for me, but then, because of heart and muscle issues, I’d been taking high magnesium for years, and reasonable amounts of vitamin E. So maybe that already had modulated my B12 needs...

Well, onward.

What I really look forward to is the resumption of sleep as something that is no longer non-refreshing, and that isn’t an exhausting saga every night...

 

[garyfritz]

Yes, my primary chewing surface has always been my left side -- and naturally my RC was smack in the middle of that. So now I have a gap there, and a re-crowned molar right behind it that is still sensitive months after getting the crown. So I have to chew on the right until I get the implant crown in June. (Fortunately the new crown on the right side is working great.) The worst part is when you can't let any food drift over to the other side. I feel like a one-sided chipmunk, stuffing my cheek while I chew. My left side has healed a bit so I don't have to be quite so careful, but I still have to avoid doing any actual chewing on the implant screw.

By the time I got all my amalgams out, my sleep was better than it's been in many years. Unfortunately chelation stirs up the mercury so I still have some sleep issues after the round. Not nearly as bad as it used to be, and hopefully it will get better and completely "heal" after I chelate out enough of the bad stuff.