Transdermal B12 oils

[garyfritz]

Out of curiosity, has anyone here taken the oils without the cofactors Greg recommends (B2, selenium etc)?

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.

If you have the problems Greg's trying to fix, then his recommendations might help you. If you have the problems Freddd is trying to fix, then his recommendations might help you. But if you have something else -- like I did -- then neither one is likely to solve your problem. Figure out your cause so you know what solutions might work for you.

(And good luck with your chelation process, Kathleen!!)

 

[Sparrowhawk]

Super excited for you @garyfritz ! Great to hear that is going well.

 

[garyfritz]

Yeah my problems were never as severe as those faced by a lot of people here -- you fr'instance!! But they still sucked majorly, and it was VERY good to get a handle on it. Chelation itself has been a bit of a disappointment. I think it's pretty obvious my problem really WAS mercury, based on many clues and data points, but I haven't seen much improvement since the fillings came out. But the problems I still have are mostly things I've had most of my life and I'm pretty used to living with them. They were just "likely mercury symptoms" (ADD, procrastination, focus issues, etc etc) and I was hoping Cutler might magically make them go away too.

 

[outdamnspot]

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.

If you have the problems Greg's trying to fix, then his recommendations might help you. If you have the problems Freddd is trying to fix, then his recommendations might help you. But if you have something else -- like I did -- then neither one is likely to solve your problem. Figure out your cause so you know what solutions might work for you.

(And good luck with your chelation process, Kathleen!!)

Thanks for your response. Greg's model always struck me as overly reductionist .. I think he claimed all CFS is really just a B12 issue? Which really wouldn't jive with how disablingly unwell some people (including me) are. The reason I asked about cofactors is because I tried to follow his advice, but didn't respond favorably to B2, so gave up on even trying the B12 I purchased. I was going based off of the fact that Jarrow's Methyl-B12 made me crash, but heapsreal suggested it could have been something like one of the fillers, not the B12 itself.

So I've been wondering if there's a chance I could tolerate the oil without requiring anything else Greg suggests. I do still have a full, unopened bottle. It's probably over a year old but has been kept sealed in a cupboard so hopefully is still okay?

 

[Kathevans]

@outdamnspot I don't think Greg has ever claimed that CFS only has to do with B12. In fact, at this moment he's a big proponent of getting all those co-factors in line, making sure you're covered. Recently, this has taken the form of a recommendation that you take a simple daily multi to make sure that all those trace minerals are covered.

Greg begins by looking at your genetics, knows where many of the problem snps are, has a look at your NutrEval or OAT test to see how your particular body is functioning.

I, too, have had a big problem with tolerating B2--I am still working on it. And it remains largely non-functional for me. Only after I realized that much of the citric acid cycle which utilizes B2, can also be inhibited by mercury and other toxins, did I begin to suspect that that may be a contributing factor in my illness, and thus my healing.

The path is rarely simple. @garyfritz has been very lucky (Yay, Gary!) that B-12 resolved some of his worst issues until amalgam removal seems to have alleviated perhaps the worst of them. And, Gary, it may be that some of those other issues--the ADD, for example, will still improve over time with continued chelation. They say that mercury hijacks B-12, so i would suspect that perhaps lower dose supplementation as well as further removal of the mercury will continue to shift things. I've had amalgams since I was about 5, had multiple doses of nitrous oxide that wiped out cobalamins (and suffered for it with on and off anxiety disorders as a younger woman), and finally had all the amalgams removed as of last April. My hopes are high. But then, so is my frustration level! The years are flipping by, and I am far from my old self...or a better, more functional self at any rate.

What else can we do but continue to hope and experiment?

Sure, go ahead and try the oil alone. But I don't think it's the way either Greg or Fred would recommend you move forward. Ultimately, Fred experienced severe copper deficiencies after only taking a multi for some years. When snps have an effect on how we metabolize, we may need more of some minerals or other substances, less of others. There's no way of knowing without some sort of functional test. And most tests will have nothing to say about some of the lesser trace minerals, like boron. It's shifted things once again for me.

 

[CCC]

@garyfritz

Congratulations. I'm so happy to see you're doing so well.

 

[Busson]

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.

@garyfritz I'm intrigued to know how closely your non-B12 illness mimicked classic B12 symptoms.

I am currently evaluating if I have some other illness (in my case related to the kidneys) which has all along looked just like B12 deficiency. Maybe my other illness caused an actual B12 deficiency because all the B12-related supplements worked as expected but I never got truly well.

Perhaps I have two illness which interact.

Can you say a bit more about how it's possible to misread another illness for B12 deficiency?

 

[Kathevans]

Maybe my other illness caused an actual B12 deficiency because all the B12-related supplements worked as expected but I never got truly well.

I would put it this way, as well.

The key issue for Mercury is that it hijacks B-12. So, if you have genetic issues like the MTR and MTRR snps, you're going to be in a worse place with mercury in your system.

Once I had my amalgams removed, I entered a new phase of this 25 year health challenge: Once amalgam is removed, the organs begin to release their long-held mercury to ultimately bring the body into homeostasis leading the body into a place called 'The Dump". Frankly, this is very unpleasant, a worsening of symptoms (aches/pains/insomnia/fatigue) and the addition of worsening psychological issues like depression. for me it is confirmation that mercury has been and continues to be at the root of my issues. This phase apparently runs anywhere from 6-9+ months post removal, at which point one is theoretically able to tolerate higher levels of ALA, Alpha Lipoic Acid, which draws the mercury gradually out of the body.

It is a process. Like all of this. And one that requires our patience and fortitude. Ugh.

And more supplements.

Oy.

The good news is that I am hopeful, albeit impatient and weary.

Very best wishes to you on your journey...

 

[garyfritz]

I didn't really have classic B12-deficiency symptoms: weakness, heart palpations, fast heart rate, shortness of breath, etc. I had a cluster of symptoms -- night-time terrors with muscular twitching/thrashing, worst RLS I've ever had, daytime agitation, skin-crawling sensations and fasciculations, etc. Almost by accident I discovered B12 helped control those symptoms, which sent me off on a multi-year journey of research and experimentation.

Those symptoms could all fit in a "neurological damage" category. B12 deficiency can cause neuro damage, but so can mercury. I didn't think I had a simple B12 deficiency because it took such enormous doses to control my problems. The Aussie B12 oil is supposed to be 80% absorbed, and I was taking about 7500 mcg/day. At 80% absorption that's about 6000 mcg/day actually absorbed, which is almost FOUR THOUSAND TIMES what I "should" need. And I desperately needed that dosage for about 2-3 years. That's not just a simple deficiency. Then I got my fillings removed, and my B12 demand vanished within a few days. I didn't use a drop of B12 oil for the next year. Which pretty definitively says to me that mercury was the underlying cause.

So... I can't tell you how to figure out your situation. Everybody's issue is going to be different. For me, it was a matter of discovering that B12 helped, and exploring from there. When I started to learn about mercury toxicity, I remembered that I'd had a large filling degrade, fall apart, and fall out -- just about the time my symptoms exploded. Hmm. Then I started taking the four nutrients (C, E, magnesium, zinc) that are supposed to be protective against mercury damage, and my B12 needs dropped 50% overnight. Hmmm. I kept digging and learning and experimenting and finally decided mercury was my problem. There was no single silver-bullet thing that said "Aha! This PROVES it's mercury!" But after 6 or 7 things showed up that all COULD be mercury, I decided that was the most likely explanation. Results since then have pretty strongly confirmed my amateur diagnosis. You will probably have to do your own digging and learning.

And it might take a while. From "filling fell out, symptoms-from-hell started" to "last filling came out, symptoms basically gone" was a five-year ordeal for me. And since then I've done 1.5 years of chelation, and I expect to do at least another year. So don't expect a quick fix. But at least I FOUND a fix, and I feel very fortunate for that.

 

[Kathevans]

Good going @garyfritz !

I'm hoping to make it through the dump phase over the next few months and be able to increase my ALA over time. It has not been an easy period for me. But then I had amalgams in my mouth since I was 5 years old. And I recall the doctor giving me what I assume was nitrous oxide for the procedure! I've since looked at my kindergarten report card and see that the teacher had labeled me with unsatisfactory behavioral issues and the comment about my likelihood of passing into first grade: "Kathleen needs to learn to SETTLE DOWN!!!"

I guess I eventually did as I've managed two college degrees!

I've managed 16 Rounds of ALA so far @ 3mg. I tried raising it to 4mg, which by the fourth round had my arms screaming with nerve pain...

 

[garyfritz]

Once I had my amalgams removed, I entered a new phase of this 25 year health challenge: Once amalgam is removed, the organs begin to release their long-held mercury to ultimately bring the body into homeostasis leading the body into a place called 'The Dump". Frankly, this is very unpleasant, a worsening of symptoms (aches/pains/insomnia/fatigue) and the addition of worsening psychological issues like depression.

Kath, I'm glad you're seeing progress in that. Hitting the Dump is No Fun, but it's supposed to be the last barrier to break through before you get on the path to better health.

I whined frequently in the ACC group that I never felt a single thing from chelation, good or bad. Other people talked about increased energy, euphoria, lots of symptoms clearing up, etc., and of course The Dump. I got big improvements from removing the amalgams, but nothing after that. I raised my ALA by 50% every 3 weeks because I wasn't feelin' nothin'. After checking with the experts on the list, I raised my ALA to 600mg per 3 hours (!!). For me that's about 7.5 mg/kg of body weight, which is 2-3x the normal "max level" for chelation! Still nothin'.

Then finally... last month, after 7 rounds on 600mg, chelating for 15 months, I caught a wicked cold. I skipped a couple of rounds while I fought that. And then... I started getting RLS, sleep problems, etc. Basically my same old set of symptoms, though not nearly as bad. B12 helped. Hmm. I started a new round, and poof! Problems went away. Since then, I start feeling symptoms after I've been off ALA for 2-3 days.

So I think I have finally hit my personal Dump. It's not fun, but it's pretty mild compared to a lot of people. And hopefully it means I've finally hit the point where, once I get through the Dump, I'll see significant improvements. Crossing my fingers!

 

[garyfritz]

I've managed 16 Rounds of ALA so far @ 3mg. I tried raising it to 4mg, which by the fourth round had my arms screaming with nerve pain...

Ugh. Obviously you're a lot more sensitive than I was, and your chelation will probably take a lot longer. I started at 7.5mg for 2 weeks, dropped to 5 for 2 weeks, then dropped to 3. Stayed there for 5 weeks, but from then on I raised 50% every 3 weeks. Since I had no symptoms, I could increase at that rate. I went from 3mg to 600mg in 10 months!!

You did the right thing. Chelation should be gentle, or at least you should not have to suffer. If you have trouble at a level, ANY level of discomfort, back off on the dosage. That's what I did from 7.5 -> 5 -> 3. You will continue to remove mercury at the lower level, and you'll be a lot less likely to flip yourself into a crisis. Slow and steady. You'll get there.

 

[Sparrowhawk]

Great to get your updates @garyfritz and glad chelation has been working out for you. Thanks also, again, for being the one who let so many of us know about the existence of the B12 oils. I recently (this year) learned I can't tolerate injected B12, for whatever reasons I break out in hot and cold sweats that last up to two hours. The B12 oils I seem to tolerate fine. I'm only doing two pumps per day, two days on two days off, with 2.5mg methylfolate orally. Slow and steady as they say. I'll eventually increase. I'm feeling incrementally better each week. At some point I want to re-engage with chelation but I've spent the last 4-6 mos treating for SIBO.

 

[garyfritz]

I'm only doing two pumps per day, two days on two days off, with 2.5mg methylfolate orally. Slow and steady as they say. I'll eventually increase.

You're averaging one pump per day, which Greg considers to be a "normal" healing dose. If you still have symptoms and higher doses seem to help, then by all means increase. But most people don't need the 3 pump/day dose I took.

I'm feeling incrementally better each week.

Yay you !! May it continue.

 

[Kathevans]

@garyfritz Kind of amazing how different we each are. That you could go that high on ALA possibly before getting through the dump perhaps speaks to the large doses of B-12 that you needed early on to alleviate symptoms. You just seem to need more!

But are you now doing 600mg ALA again? IF so, it would seem that you might be in the home stretch--that is, 600 mgs at that level, once you get to symptom-free off round, ought to have your cleared out. How long did you have amalgams in? I look forward to following in your footsteps--at least to some extent!

Meanwhile @Sparrowhawk Why not continue to chelate even while treating SIBO? I have been assuming a return of my SIBO for some time, given chronic ibs symptoms. I have just started Monolaurin and will likely add other things. Supplements that can assist in altered biome colonization: L-carnitine fumarate (diminishes strains of clostridia), boron (I got tangled and distracted in this for too long and finally settled on a very low daily dose of 700mcg in Thorne's PicMins-it's a natural anti-fungal/anti-bacterial) and B1 (which is said to heal ibs-I am taking 300mg/day of benfotiamin and have noticed definite changes in gut motility, which Greg Russel-Jones said can ultimately heal the gut--different motility makes a different environment and thus allows for the survival of different bacterial strains) (You can Google scientific papers on each of these things).

And what about diet? I had enormous emotional stress for a couple of years--the death of a beloved sibling--and my diet went out the window. Getting back under control has been hard. Prior to that I was very good for about 15 years, low carb/gluten-free, but not keto, one cheat day a week for ice-cream or chocolate.

Now, depressed and in the dump, those carbs are harder to resist...

Life...

 

[Kathevans]

But most people don't need the 3 pump/day dose I took.

I do! One or two Methyl and at least one Ado/Methyl... And--dare I say it--I do one 1mg injection/day at night. so, a lot for me, too.

 

[garyfritz]

But are you now doing 600mg ALA again? IF so, it would seem that you might be in the home stretch--that is, 600 months at that level, once you get to symptom-free off round, ought to have your cleared out. How long did you have amalgams in?

If I remember right, I had something like 13-14 amalgams in my baby teeth, and 10 in my permanent teeth. So I had plenty in while I was a kid, then a period with few/none after losing my primary teeth, building up to 10 by the time I was in my 50's, all out when I was 61. Many decades of many amalgams.

I don't seem to follow the standard process that well. I chelated for over a year with no response, didn't get any reaction until I was at 600mg for 2 months, etc. So will 6 months at 600mg clear me out? Who knows!?

(Clarification / correction: I goofed this next bit, this should be correct now.) I started 600mg on round 50 in Feb. I'm currently on round 62. I plan to go stay at 600mg from round 50 to round 100, which would be about 12 months. Then I'll re-assess and decide if that's "enough."

 

[Kathevans]

So will 6 months at 600mg clear me out?

So they say that 6 months at your highest level (whatever you determine that is by weight or circumstance) without any symptoms does the trick. then folks seem to do once a month for a while just to be sure and if everything remains steady, then you're done.

I have seen people, maybe one of the McBlains say that at some point some symptoms returned very lightly--the release of very deeply held mercury--and it was simply taken care of by a couple of rounds.

It just may be that you need higher doses of anything to get the reactions you want--the healing or clearing out, etc. The point is, you've found the path for you. Great.

 

[stridor]

@garyfritz I exist at the crossroads of these theories. I fit Greg´s theory perfectly, have a collection of methylation SNPS and alarming Hg exposures. Your story is quite unusual. Words are not my friends this morning but there are stories of some presumed ¨electrical interference¨ caused by amalgam or amalgam and other metals in the mouth, and these people have a sudden relief of symptoms with amalgam removal. The other avenues that I have had to explore are the Stealth Infections - for me, mycoplasma and HHV-6 and SIBO/dysbiosis.

I only have RLS for a brief (but maddening) period of time. The loss of sleep and helplessness made me feel depressed. I started bupropion (increase dopamine and norepinephrine) and a multivite the same week and was never really sure whether it was one, the other, or a combination that fixed the problem. RLS is a complex issue but may hinge on neurotransmitter levels and MTHFR a1298c leaves that door open. What has been your experience with targeted amino acid supplementation?

 

[garyfritz]

@stridor, I fit Greg's theories too, or so he said. You can see (below) that I have a bucket-load of MTHFR and other related SNPs, and Greg said it was a "typical profile for people with CFS and ASD." He said that's why I needed so much B12. But I didn't respond whatsoever to his treatments, I believe because his model doesn't consider mercury. I believe the SNPs had vastly less impact on me than the chemical toxicity. I didn't have "alarming" exposure to mercury, but 12-14 fillings in primary teeth, 10 in permanent teeth, played with mercury every chance I got as a kid, mom used merthiolate on every scrape, vaccinations... I had plenty.

I understand your "electrical" reference -- metals can cause battery-like voltages in the mouth. But if that was the cause of my problems, I don't think a sublingual B12 -- or, even stronger, a dose of B12 oil -- would resolve the problem. I think my issue was biochemical. Whatever the cause, I was mighty glad it went away when the fillings came out.

Very interesting, though -- as I said above, other than a few issues when I first started, I never felt anything from chelation. I went from 3mg/3hr to 600mg/3hr in less than a year without feeling a thing. Never had any improvements, never had any dump, for 15 months. It made me seriously question if mercury really WAS the issue. Until the last month. I skipped 2 rounds for a wicked cold, and my RLS / muscle twitching / agitation / etc all came back. B12 helped. Symptoms stopped when I started chelation again. So I think I have finally started my long-overdue Dump, which does make mercury sound more likely.

I had RLS as long as I can remember, at least back to age 6 or 8 or so. Not constant, but maddening. It made car & plane rides a real picnic sometimes. After my filling degraded & fell out 6ish years ago, the RLS got much MUCH worse and much more frequent. Almost constant at varying levels of intensity. Not usually at night, thank heavens, but I had other torments at night. Once I discovered B12, especially once I got on the oil, my RLS was almost totally controlled. After that, RLS was my "early warning signal" that my B12 levels were getting low.

I never did anything specific with aminos. What did you have in mind?