Transdermal B12 oils

stridor

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@garyfritz It has been a number of years since I looked into this and I would not presume to instruct you....that said, at the time I reached the conclusion that RLS was a symptom that likely had more than one cause. I felt that dopamine was going to be one and in support of this, nicotine was helpful. (I recognize that nicotine raises other monoamine neurotransmitters other than dopamine, but it Does raise dopamine).

I was wondering whether you had done any reading on phenylalamine, tyrosine or l-dopa supplementation for RLS? I have not but it would seem to be a reasonable avenue of investigation.

Another idea that I would leave you with. Is whether the return of symptoms in the absence of ALA was in anyway related to the antioxidant effect?
 

garyfritz

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599
I looked briefly at L-Dopa, but it has serious side effects that sounded much worse than RLS.

I think I experimented with tyrosine but didn't notice any benefits. Never looked at phenylalanine or nicotine.

ALA antioxidant effect... hmm. Very interesting idea. I suppose it's possible, if the symptoms are caused by some kind of oxidative agent. (Mercury being one of the worst, of course...)

I'm not quite sure how to tell if the symptoms are controlled by "mercury dumping but being vacuumed up by ALA" or "ALA antiox blocking the damage of mercury or other oxidative agents."

I tend to think it's not just ALA antiox.
  • My symptoms disappeared right after fillings came out. ALA was not in the picture yet.
  • I took a month off chelation after 8 rounds of ALA, and I didn't notice any change.
  • My symptoms returned after a 1-week chelation hiatus, and disappeared when I started ALA again. After that I noticed symptoms starting just 3-ish days after finishing a round. That could possibly be due to antiox, but why do the symptoms reappear now when they didn't a year ago?
The disappearance and reappearance of symptoms seems to fit mercury. Sudden drop of mercury influx resulted in almost-immediate cessation of symptoms and B12 demand. Chelation break after 2 months of ALA might not have caused a problem if my levels were still low and getting lowered by ALA. Symptoms showing up after 15 months, when I go off ALA, seems to fit a dump. But I don't know if the improvement (now) with ALA results from antiox (which would probably be a temporary benefit) or from chelation (which is hopefully permanent by reducing deep mercury storage).

I guess I keep chelating, and hope I improve on the tail of the dump?
 

stridor

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I took l-dopa briefly, well aware of the risks, but sick enough not to care too much about it. Like I said, you are definitely on your own path with this and it will be interesting to see how you make out. I certainly hope that you are able to win the fight against RLS, it is such a nightmare.
 

garyfritz

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599
For me at least, the RLS was seriously crazy-making, but it was nowhere near the worst symptom. For quite a while -- 1-2 years? -- I was waking from about 2-5 every single night. My muscles were twitching and thrashing, crazy like RLS but moving on their own like a grand mal seizure. Ripping the bed to shreds. And I was in a semi-awake semi-nightmare state, just terrifying. Every. Freaking. Night. I dreaded going to bed at night but I was so exhausted from lack of sleep that I had to try to grab a few hours of fitful sleep before the terrors and seizures started. B12, especially the oil, saved my sanity. I was so glad it all went away when the fillings came out!!
 

stridor

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@garyfritz Ha! that will teach me to pay more attention when I am reading. In terms of ADD, focus and procrastination, if you are like me, you will still see improvements months after chelation is done.
 

dannybex

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For me at least, the RLS was seriously crazy-making, but it was nowhere near the worst symptom. For quite a while -- 1-2 years? -- I was waking from about 2-5 every single night. My muscles were twitching and thrashing, crazy like RLS but moving on their own like a grand mal seizure. Ripping the bed to shreds. And I was in a semi-awake semi-nightmare state, just terrifying. Every. Freaking. Night. I dreaded going to bed at night but I was so exhausted from lack of sleep that I had to try to grab a few hours of fitful sleep before the terrors and seizures started. B12, especially the oil, saved my sanity. I was so glad it all went away when the fillings came out!!

I'm sorry you had to go through that, but thanks for posting your story for the encouraging ending @garyfritz .

That's almost precisely what I've been going through for the past 3-4 weeks -- and also off and on as it got worse for the past six months. Not to mention some lesser but similar occurrences 10-20 years ago. RLS is the worst, but when it turns into strong twitching and violent cramping and you haven't even done anything exertion-wise, then it truly is THE definition of hell.

I just got the oils, have been toying with his mineral co-factors, and am ready to take the plunge. I think.

My question is this: Did you follow the rest of Greg's protocol? The low-dose iodine, selenite and molybdenum, then the low dose b2 -- before starting the oils?

And when the oils wore off -- did you sink quickly back into that nightmarish state -- or how did it go?

Lastly, I'm guessing you're aware that he believes mercury is chelated by B12, and not ALA?

Thanks in advance.
 

dannybex

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Also curious @garyfritz if you lost a lot of weight or muscle from all the stress hormones -- the adrenalin, cortisol, etc., -- and if so, have you gained it back?
 

dannybex

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Yes. I took large doses for 3+ years without any specific B12 cofactors. I found they didn't make any difference FOR ME.

It's not surprising that Greg's recommendations didn't work, since my situation didn't fit Greg's model. After several years of research and experimentation I decided my problem was very likely not CFS/ME, not MTHFR, not Greg's theories. I decided (based on about a dozen clues) that it was mercury poisoning. I started taking the Cutler-recommended "Core Four" (C, E, Mg, Zn) and my massive B12 requirement dropped by half, literally overnight. I proceeded with dental revision and got all my amalgam fillings removed. The last one came out on 12/7/17, and about a week later I took my LAST dose of B12 oil. I haven't needed it for 14+ months now.

Greg never believed me. He has his mental model of how B12 metabolism works (which he understands extremely well) but he refuses to consider there might be other unrelated things that could mess up B12 metabolism. He never accepted that anyone could get mercury-toxic from amalgam fillings, and ridiculed/ignored the studies I presented that didn't agree with his worldview. When I updated him with the good results of the amalgam removals, he responded something like "still flogging the same tired mercury theories I see." He said the Core Four and amalgam removal did "bupkiss" for me, and I got better because 3 years of massive B12 supplementation had suddenly filled up my supplies to the level I needed. (Which he originally told me might take a month.) He didn't explain why 3 years of trying all of his recommendations didn't work, but the problem went away within days of removing the last mercury from my mouth. I gave up on trying to convince him.

Ignore my previous comment about ALA/B12 and mercury. I see you answered it already. :)

I do get that feeling that his views are SET IN STONE, but I suppose that's true of probably every so-called guru out there, including Cutler and Fred. Good you were able to find what worked for you and especially good that you don't need the B12oil anymore. That was some HIGH-DOSE supplementation.
 

garyfritz

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599
@dannybex it sure was. I was nervous about taking so much, but 1) everything I read said there was no toxic level for B12, take as much as you need, and 2) I was miserable if I took any less. So I figured I needed it.

I followed most of the things Greg told me I needed. I did not notice any improvement from any of them, and so didn't stay on them real long. Only B12 helped.

The oils wore off gradually, over the course of hours. I was taking 3 squirts a day -- 1 in the morning and 2 at night, if I remember right. I had almost ZERO sleep problems while I did that. I had the thrashing and night terrors BEFORE I discovered B12. At first I used a sublingual B12 spray, which worked for about 6 months. Then I had to start ramping up my dosage. I switched to sublingual lozenges, and at one point I was taking over 30,000 mcg/day. Still didn't control the symptoms, but it helped. (If you want to try lozenges, make sure you use one that doesn't have acids or sugars, if you're going to be soaking your teeth in them all day long. I used Country Life Methyl B12 5000mcg broken into 1/4s. But the oil was MUCH better.) When I found out about the oils, it was like a miracle cure for me. I would still wake in the night occasionally, tense and agitated, but a 1/4 lozenge behind my lip would calm me and I'd be asleep within a minute or three.

Oh Greg says B12 chelates now? The only mercury comments I got out of him was scoffing at any idea that anyone could possibly be mercury-poisoned unless you lived in Minamata in the 50's.
https://en.wikipedia.org/wiki/Minamata_disease

No, my weight has been very stable my entire life. From college until my 50's it stayed in a 10lb range. In my late 50's it crept up another 5-10lbs but I don't think I can blame that on mercury. :)
 
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Kathevans

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Boston, Massachusetts
I continue to use 3-4 squirts of the oil each day—and find both the simple Methyl and the Adenosyl/Methyl important to use on a daily basis—all of Greg’s co-factors, as well as high folate a la Fred (12-15mg /day), and am currently not only doing Cutler chelation (have had all my amalgam out since April 2018 and may be easing my way out of the dump on3mg ALA) but am also refeeding Boron. Really. Just as Fred has defined it.

We are each unique.

I’ve listened to Greg’s incredulity for years, and just soldier on. Maybe my next NutrEval will prove me to be right, have me moving in the right direction. He was pleasantly surprised to hear I got such a jolt from the Boron (though he would have held me to a much lower dose than I am taking). He does like the idea of covering all the trace elements, and recommended several multis that include a host of basics and minerals.

I know he can’t figure out why I’m not up and running at this point...But if we were to adhere to only one protocol, we might find ourselves forever stuck. I find this just as true for the Cutler protocol, which would have you just chelate, chelate, chelate. By the time you’ve been struggling with chronic issues for a couple of decades, you have to be open-minded.

What was it Will Shakespeare said? “There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.”

For me, none of them has provided an easy fix, but each seems to contribute to the over-all problem. And each seems to be necessary.
 

dannybex

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@dannybex it sure was. I was nervous about taking so much, but 1) everything I read said there was no toxic level for B12, take as much as you need, and 2) I was miserable if I took any less. So I figured I needed it.

I followed most of the things Greg told me I needed. I did not notice any improvement from any of them, and so didn't stay on them real long. Only B12 helped.

Well, I'm still nervous, but I'm promising myself I'll take the plunge tomorrow, despite getting cramps when I got in bed last night. Usually they haven't come on until the early am. Anyway, it's just too late in the day to try it now, as the last thing I'd need is another night of bad sleep.

But you make an interesting point -- that most if not all studies and references state there is no toxic level, yet so many of us have had issues in the past -- or think we have -- and I guess I'm a prime example of continuing that trend.

But I have to say, that way back in 2002, I was having a terrible year. Lots of stress, lost my job, aunt died, etc., and just could not settle down. Was troubled by lots of twitching and cramping in my (much younger) legs. The suggestions were always magnesium (because it 'relaxes muscles' haha) or calcium, or a combination of the two. Neither of those helped, in fact just made things worse, and thanks to brain fog, they made things worse in 2010 as well.

But near the end of 2002 I found a new doc who immediately prescribed methyl-b12 shots along with nebulized glutathione. In less than a week I felt 75% better. And I didn't take any potassium, it was never ever even brought up -- I just felt a lot better. Maybe the glutathione helped 'protect' the B12, as @richvank used to say...

I kept up the shots for about five months or so, but dropped the glutathione after maybe two, and by June 2003 I was becoming more and more agitated and wired again. I put this down to salicylate intolerance and/or yeast issues, but at my next doc's appt, after I mentioned I had been diagnosed a couple years earlier with a thiamine deficiency, he prescribed 100 mg thiamine injections. They worked SO WELL, that I thought I could go off the klonopin I was taking cold turkey. I was incredibly calm, relaxed, and went into an 80% remission for the next two years.

I mention that because I read earlier in the thread that @Athene* and a couple others had to stop the B12. Maybe thiamine injections might be beneficial? Just a thought. I saw too that @Eastman and @sb4 had mentioned it as well -- and I agree that there seems to be a yin-yang relationship when it comes to B12 and folate. At least that was my experience.

The oils wore off gradually, over the course of hours. I was taking 3 squirts a day -- 1 in the morning and 2 at night, if I remember right. I had almost ZERO sleep problems while I did that. I had the thrashing and night terrors BEFORE I discovered B12. At first I used a sublingual B12 spray, which worked for about 6 months. Then I had to start ramping up my dosage. I switched to sublingual lozenges, and at one point I was taking over 30,000 mcg/day. Still didn't control the symptoms, but it helped. (If you want to try lozenges, make sure you use one that doesn't have acids or sugars, if you're going to be soaking your teeth in them all day long. I used Country Life Methyl B12 5000mcg broken into 1/4s. But the oil was MUCH better.) When I found out about the oils, it was like a miracle cure for me. I would still wake in the night occasionally, tense and agitated, but a 1/4 lozenge behind my lip would calm me and I'd be asleep within a minute or three.

Oh Greg says B12 chelates now? The only mercury comments I got out of him was scoffing at any idea that anyone could possibly be mercury-poisoned unless you lived in Minamata in the 50's.
https://en.wikipedia.org/wiki/Minamata_disease

No, my weight has been very stable my entire life. From college until my 50's it stayed in a 10lb range. In my late 50's it crept up another 5-10lbs but I don't think I can blame that on mercury. :)

My mistake on the B12-chelation thing. I thought for sure he had said that, but went back late last night and searched the FB group and couldn't find the quote. He did seem to argue though that because he and his wife had mercury fillings and were in great shape that that's why they shouldn't be a problem for anyone.

It's fascinating when you think about it how Dr. Russell-Jones and Andrew Cutler are/were polar opposites. I remember Cutler bad-mouthing methylation for years, and here's Jone's trashing chelation. Plus Jones thinks we're all iron deficient (unless your ferritin is over something around 160), while Morley Robbins thinks everyone is iron toxic. I guess it shows we're all just human, and sometimes cling maybe a little too hard to our own views for fear we're not 'right'. Whatever that is...

Anyway, thanks for the encouragement and thanks to everyone for their contributions to this thread.

Tomorrow is The Day.
 

garyfritz

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599
My mistake on the B12-chelation thing. I thought for sure he had said that, but went back late last night and searched the FB group and couldn't find the quote. He did seem to argue though that because he and his wife had mercury fillings and were in great shape that that's why they shouldn't be a problem for anyone.
What an idiotic statement from such an intelligent person. I'm 6'4" and easily reach things off the top shelf, so it shouldn't be a problem for anyone else to reach the top shelf too. :rolleyes:

He knows darn well that different people are different, and respond to things differently. He just refuses to consider that the same logic applies to mercury sensitivity and toxicity.

Good luck with your test!
 

HABS93

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Messages
485
TL;DR Summary:

A small Australian company makes a B12-infused oil, like massage oil. Rub it into your skin and the B12 diffuses into your system. It's supposed to work better than other delivery mechanisms. They have animal tests showing as much as 80% absorption, and they're currently doing a clinical trial on humans. That's vastly higher than you're going to get from sublinguals, and the oils are supposed to deliver steadier B12 serum levels than injection.

Their website (http://www.b12oils.com) is terrible, lacking even basic information. But they're extremely helpful and the product seems to work well. I've summarized most of the need-to-know info here.

The oils come in little bottles that measure out a 0.25ml squirt. Each bottle has about 50-60 "squirt" doses. They recommend one squirt/day, but I'm finding 3 or even 4 is working much better for my specific SNPs.

They have two main B12 products:
  • Pure methyl B12, with 3mg/ml of B12, 0.75mg mB12 per dose.
  • Adeno/methyl B12, with 7.5mg/ml of Adeno and 2.5mg/ml methyl. So that's about 1.875mg adB12 and 0.625mg mB12 per dose. They say that is the proportion normally found in the body ("although of course this would be in a person who methylates normally"), and people with CFS/ME get good results with it. With my SNPs I think I'm doing better with more methyl.
They also have pure-adeno, hydroxyl, hydroxyl/methyl, and others. Pricing is $50/bottle, roughly $1/dose. Buy 3 bottles (any combination) and the price drops to $40.

I've only been using it for about 10 days, but so far the results are much better than the 20mg Country Life mB12 + 4mg adB12 I was using before. I might need 2-3 doses per day for best results -- still testing. I also tried IM and SC injection and neither seemed to work as well for me as the CL, so this is by far the best thing I've found so far.

===============================

Much more detail:

In this thread @Lynn_M said she'd been using a transdermal oil product for over a year and was very pleased with the results. I ordered some to give it a try.

As I said above their website is terrible, but their "support person" Greg (who I later realized is Dr. Gregory Russell-Jones, director of the company) is extraordinarily helpful. He says he's not an MD, "just" a PhD biochemist with 25 years of studying B12 metabolism, so he's very familiar with all the relevant SNPs and reactions.

Greg helped me clarify my understanding of how B12 metabolism works. For the benefit of anyone else who might be interested, here's what I've learned and how it applies to the oil products:
  • B12 is used constantly in nearly all systems of the body, but especially the brain and nervous system.
  • Sublinguals and injections (and the oil) raise the B12 level in serum, but the B12 is not usable in this state. It must be picked up by a "transporter molecule," transcobolamin II (TCII), and delivered to where it is needed.
  • The problems with sublinguals, and even injections to a lesser extent, are absorption and duration. Sublinguals typically have very poor absorption, especially if you dissolve them quickly. Greg says "very, very little" of the B12 from sublinguals reaches the brain. Sublinguals and IM injections spike the serum levels of B12 for a short time but don't maintain it. SC injections are better but still not ideal. The oil is supposed to deliver B12 slowly over the course of 8 hours or more. For my specific situation one 8-hour dose per day wasn't enough to keep my symptoms under control, but it does seem to work much better than sublinguals or injections. More frequent application worked much better.
  • Greg used the analogy of the TCII being like a ferry boat that carries cars across a river. Say the ferry carries 10 cars. Sublinguals and injections tend to spike the levels, so there are 100 or 1000 cars waiting in line for a little while. But before the ferry can carry them away, the B12 levels drop. So most of the B12 is lost and wasted. It does no good to have 1000 cars there for a short time; you want at least 10 or 20 cars there ALL the time, 24x7, so you can always load up a ferry whenever one shows up. The oil is supposed to excel at that.
  • BTW this is why you're not supposed to suck on sublinguals -- they dissolve too fast. Not only do you absorb less, but you spike the levels for a shorter window of time. You want to dribble B12 into your system as slowly and as consistently as possible, to load up as many TCII's as possible.
  • I asked Greg if there was any way to increase the number of TCII's so we could speed up the B12 pipeline. He said "Choose different parents?" :) So we just have to make sure we make the best use of the TCII we have.
  • The TCII ferries can deliver B12 to the brain or wherever it is needed at the moment. If there is no B12 in serum, the TCII can load up from the B12 reservoir in the liver. Ideally the liver holds about 5mg of B12 in reserve. (The brain may store a reserve too -- not sure on that point.) But if your B12 requirements are higher than your B12 supply -- which is typical for those of us with the various B12-related SNPs -- then the reservoir in the liver eventually gets drained. Then you have no source of B12, the TCII ferries are empty, and you start to show acute B12 deficiency symptoms, e.g. CFS/ME. (I suspect this is what happened to me over the past 1-2 years: with age my ability to process and deliver B12 decreased. I had periodic symptoms as my B12 supply fluctuated. I eventually drained my liver's B12 reservoir, and then I started feeling like crap.)
  • One interesting side factoid was that MTFR/MTRR appear in the population at much less than expected Mendelian levels, because fewer fetuses with the mutations survive. In countries where they don't supplement with folate, the incidence of the MTFR/MTRR SNPs is only 3% or so. In countries where they do supplement, the levels of the SNPs are much higher. As are levels of autism &etc.
The oil is supposed to keep your serum levels high at all times so the TCII is always loaded up for immediate needs, AND for re-stocking the reserves in the liver. Greg warned that it could take a year to fully top up the reservoir.

He says many people get good results from a single dose per day. In 10 days of testing, I found it only seemed to work for 4-6 hours for me. In the last few days I've boosted to 3-4 doses/day, and my symptoms have mostly disappeared. My muscles are still a trifle achy/tingly but my energy level is better and I'm sleeping soundly through the night. (And this is in spite of "challenging" it for the last few days. In the last several months I haven't been tolerating alcohol at all well. The last 2 days I got together with friends and had 3-4 drinks -- and had no adverse effects!) This is MUCH better than I was doing with 20-30mg/day of CL mB12 plus 4mg/day of adB12. Greg says it sometimes takes a few weeks for people to "take to" the oils, and it takes about a full month to get full benefit, so in another week or two it may start working better and I may be able to back off to 1-2/day.

After some period of using extra doses, I should fill up my reserve tank, and after that I think I can probably back off to a lower level. But the results I'm getting with ~3 doses/day are well worth it to me. I'll be happy to use the higher dosages for a year if it means my symptoms vanish and the re-supplied reservoir will once again protect me from deficiency.

Using the oils: just squirt a dose into your hand and rub it into your skin. Leave it on, i.e. don't wash it off. Greg says you can rub it anywhere, but I suspect it might work better if applied to fatty tissue. So I've been applying it around my belly and midsection. The oil is quite red, but it rubs in fine. I might notice a very slight rosy glow where I've rubbed it in, but I might be imagining it.

So that's what I know about the oils so far. I'm very pleased with the results I'm getting and I'm excited to see how it improves over time.
Ilive tried B12 drops give negative side affect does that mean my B12 is normal ? My test came back saying 422
 

garyfritz

Senior Member
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599
  1. What kind of negative side effect?
  2. How big a dose did you try? What kind of B12? (methyl, adenosyl, hydroxo, cyano, ...)
  3. I assume the 422 was 422 pg/mL of B12? That's in the American "normal" 200-900 range. The book "Could It Be B12?" says you should treat anyone with levels under 450. In Europe and Japan, anything under 500 is considered abnormal. I wouldn't expect acute problems at 422, but I'm no expert.
  4. I don't know what caused your bad reaction, but I believe somebody with normal B12 metabolism would have no effect from B12 supplementation.
 

dannybex

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I ended up doing a pre-B12oil experiment yesterday.

I took about six small pieces -- say 1/4 of a sublingual tablet -- of Dibencoplex AD-B12. I had notes on my calendar that it helped with cramps and twitching about a month ago, so I figured I'd try it again, plus take a little more right at bedtime and just keep it in between my lip and gums.

I also took several folinic acid capsules (800 mgs each) later in the day, and a couple before bed. They tend to help me sleep as well. And also a melatonin.

Well, it worked. I went to bed around 12:20am, woke a little after six to use the bathroom, and then before heading back to bed, took a little more AD-B12.

Although I heard my alarm at 7:20, I kept hitting the snooze button, and then must've shut it off as I didn't wake up until 8:30. That's the longest I've slept in 10 years.

Most importantly, no cramps when I first got up. I could feel some twitching when I was standing in the bathroom, but no strong, debilitating cramps. :)

And so since that went well, I took the plunge and tried some of the AD-B12/MB-B12 oil around 12:30 or so. I think I felt that 'ahhh' feeling a couple of times, but at least didn't feel worse. Although I've been REALLY tired today, wanting to go back to bed. My eyes are drier than usual, which might be a potassium thing(???) so that makes me just want to shut them.

I'm not too worried about the extra fatigue/needing to sleep thing, considering I've been in the opposite situation for so many months, even years.

Thanks again @garyfritz and all.
 

dannybex

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Unfortunately, back to hell today. The only obvious difference was the B12oil, but I also skipped the electrolyte drink before bed (with added bicarb), and may have eaten too much protein. But it's possible that I just cannot tolerate any MB-12, as I had tried it in sublingual form a couple weeks back as well...maybe just too overstimulating as I know it is for so many.

I mention the latter because I have high ammonia, so that could be causing a lot of the problems. In fact, a doc said as much a few months back. Put me on glutamine 3x day, which may have helped, but not sure. I'm trying arginine now, and will see how it goes, but also just ordered some b. infantis and b. bifidum as they both lower inflammation and ammonia (and phenols, etc). B. infantis was even shown to be beneficial for CFS patients.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3744517/

It's just SO incredibly frustrating as you all know.
 

Abrin

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Messages
329
I am sorry if this question has already been asked because I hate wasting other people's time but I was honestly just too tired to read through all 35 pages of this thread today.

Does anyone know of a Canadian supplier for these types of oils? With the exchange rate of one American dollar being worth $1.32 Canadian skipping products in from American suppliers tends to add up in cost very quickly. :(
 

Kathevans

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Boston, Massachusetts
I am sorry if this question has already been asked because I hate wasting other people's time but I was honestly just too tired to read through all 35 pages of this thread today.

Does anyone know of a Canadian supplier for these types of oils? With the exchange rate of one American dollar being worth $1.32 Canadian skipping products in from American suppliers tends to add up in cost very quickly. :(
The product comes directly from Australia, and takes a month to six weeks to arrive in these pandemic times. Prior to this disaster, the oils arrived in a a week or two at most... Oh well.
 
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