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

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by boohealth, Mar 9, 2016.

  1. nicola

    nicola

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    It seems suitable for me to chime in, as I am on the same journey here. Brief history: mercury toxicity from 13 amalgams, POTs, gallbladder / liver issues, burning mouth, hypothyroid. Amalgams removed 13 years ago, chelated on Cutler protocol but only DMSA as I never tolerated the ALA, so much unfinished business. Gave up after a couple of years and focused on methylation. The usual problems with doses and co-factors, so I never really got anywhere and gave up. Years passed, never really well, functioning at 60%. Everything fell apart in perimenopause. After a couple of years of symptoms, my gallbladder had to come out. My recovery from the operation was very slow, and after two weeks on the sofa I put two and two together on B12 and nitrous oxide, and the deficiency which is behind all my symptoms.

    I started on the B12 oils in November, so it is still early days. As per Greg, I am taking B2 and the co-factors, but after a brief few energetic days at the beginning, am not really feeling any benefit. I understand that recovery may take years, and that the vagus nerve damage which is causing my POTs and ex-gallbladder / pancreatic symptoms, may not be cured at all, because this has been going on for 15 years. Every blood test I have had since the beginning of my illness showed extremely elevated B12. Not one doctor has followed up on it, beyond telling me not to take any more, which is of course completely the wrong advice. I haven't done the gene testing, but I am certain I have MTHFR, and can see symptoms of B12 deficiency running throughout my mother's side, and in my children too.

    At the beginning of January, I started on B1, as per Lonsdale, for the dysautonomia and to use up the B12. It has been a rough ride. I worked quickly up to 150mg of Lipothiamine, but it contains ALA, and this made me increasingly sick before I realised. Then I moved to 300mg benfotiamine, which was OK, but nothing remarkable. Now I am taking 50mg of Allithiamine, and about 200mg of benfotiamine, along with a cocktail of B2, l-acetyl carnitine, copper, zinc, iron, alpha GPC, huperzine, calcium d glucarate, selenium, iodine, potassium, magnesium, molybdenum, vitamin D, tudca, a little bit of folate and P5P occasionally. I have Sphincter of Oddi dysfunction (also dysautonomia) which is keeping me sick and nauseous. I have severe histamine, sulphur and oxalate issues, food intolerances and some hardcore fatigue. I am bordering underweight and struggle to eat 1000 calories a day. I am on adrenal and thyroid support. Perimenopause is awful. I feel like a walking car crash. I am nearly 52.

    I am thinking about B12 injections, as I am not convinced that the oil delivery system gets the B12 into the CNS. Or I am so messed up my body really can't handle the B12. Both B12 and folate were massively over range in recent blood tests but B12 deficiency symptoms continue, including sore tongue, POTs, gastroparesis, brain fog, anxiety and depression. I get very easily over-methylated - backache, anxiety - which stops me from using the B12 every day. I obviously have a problem with using it, despite the B2 and B1 and co-factors, folate etc, which I don't understand. I don't know what to do next other than keep going and hope that this prolonged sick period is basically my body sorting itself out with the B vitamins, gallbladder removal and disappearing hormones!

    Anyway, you get the picture! It is a lonely journey, so I am interested to follow your experiences.
     
    Athene*, brenda, Kathevans and 3 others like this.
  2. Kathevans

    Kathevans Senior Member

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    @nicola Sometimes it’s hard to know what to say. You have a host of things going on. It’s a lot to deal with. I’ve never been able to tolerate more than about 200mg of Benfotiamin, and have settled on about 100,or 2/3 of a 150mg capsule.

    One thing I will say is that enough magnesium, about 400-600mg/ day may have made it easier for me to tolerate B12 and other methylation.

    Just a thought.

    Take care.
     
    Athene* likes this.
  3. gettinbetter

    gettinbetter Senior Member

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    I seem to recall some here tried making their own B12 oil
    If you please could someone mention how they did it ?
    What kind of oil what kind of B12 How did they prepare it ?

    Thanks
     
    Mel9 likes this.
  4. Eastman

    Eastman Senior Member

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    Yes, a few people here have tried making their own B12 oil. You may have seen a previous post of mine on this.

     
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  5. gettinbetter

    gettinbetter Senior Member

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    How would coconut oil work?
    What form of B12 works best tablets powder lozenges liquid?
    Thanks
     
    Last edited: Apr 2, 2018
  6. Sita505

    Sita505

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    I live in New Mexico, USA. Is there a way to order these oils? You folks are way over my head. I have a masters degree, but no chemistry background..
    Many thanks, Sita
     
  7. Eastman

    Eastman Senior Member

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    A member used coconut oil but it didn't seem to work very well.

    I used B12 powder from a capsule. Some others use liquid B12.
     
    gettinbetter likes this.
  8. bjl218

    bjl218 Brian Levine

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    You can order from http://b12oils.com/
     
  9. bjl218

    bjl218 Brian Levine

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    FWIW, just had a great email conversation with Greg from b12oils. He really seems to know his stuff and really seems to want to help. I've ordered some of his b12 oil and I'll let folks know how it goes once I start with them.
     
    Mel9 and gettinbetter like this.
  10. Sita505

    Sita505

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    Thanks very much.
     
  11. Athene*

    Athene* Senior Member

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    Hi @nicola, I switched from injections to oils (B12) for nine months a couple of years ago and became very ill with a gradual return of neurological symptoms which had been healing up to then. I got much better within weeks of switching back to B12 injections. I need 20mg (not mcg) of injected B12 daily to keep symptoms at bay and 30-40mg of methylfolate plus all the cofactors from @Freddd's regime. Re-feeding syndrome with all of this has been a big challenge. I had undiagnosed pernicious anaemia for decades (only displayed itself after illness/viruses/operations in the early years, then became weaker and eventually bedridden in my early 40s).

    Also, like you, I am hypothyroid and may have gallbladder/liver issues (yet to be checked out), am coeliac, and have myriad dysfunctional B12 and folate genetic polymorphisms to do with absorption/transporting/recycling. For me the folate doesn't work at all without enough B2 (r5p).

    I use 50mg Allithiamine since a few weeks ago. I may reduce to 25mg. I tried 100mg for about 10 days and it used up all my folate and b2 and no matter how much of those I took I had low folate (particularly oedema in legs & tummy area) and low b2 symptoms (extremely dry eyes and facial redness and itchiness both sides of nose on cheeks, and chin) and became progressively weaker. I could never withstand the amounts of thiamine some others here are able to take.

    However, 25mg-50mg Allithiamine has improved things, noticeably hair shedding for some reason, which has now stopped after two years of shedding on @Freddd's regime. It was caused mainly by LCF (raises testosterone as far as I know, along with Adenosylcobalamin) which I can tolerate better (as well as adenosylcobalamin) since taking Allithiamine. I have no more flaky dry skin or brittle nails (these were low folate symptoms which Allithiamine has improved. My tinnitus has gone completely and my hearing has improved to what seems to be normal again in my right ear. My red cell count has increased at last (on full blood count).

    The Allithiamine seems to be helping me use up my folate and b12 (as per above symptoms and other symptoms don't return so quickly if I miss an injection or folate dose, and I don't lose any B12 in urine any more - before Allithiamine urine was often pink), but like @Freddd, if I take too much thiamine I get insatiable folate (and B2) needs, but not potassium - for some reason I don't need more potassium with Allithiamine (maybe because I'm keeping the Allithiamine dose low).

    Like @Kathevans I need a lot of magnesium (tons of it!) to keep up with the Allithiamine and the vitamin D lamp I use (narrowband UVB is the only form of D I can tolerate without immediate and severe insomnia and high blood pressure and other disabling symptoms). This has all taken two years to work out and to manage to tolerate @Freddd's regime. It has been worth it though.

    @Kathevans Hope this is of some use to you too and glad to see you're making your way with LCF. I'm still slowly titrating LCF (very slowly - causes agitation and high testosterone symptoms, though less for some reason since Allithiamine low dose...). Adenosylcobalamin and LCF have been my biggest challenges and have been excruciatingly difficult to titrate but I do see a return of muscle strength so I am persisting!

    I have gone from being bedridden, then completely housebound to getting out a for a little walk most days. I can do all my own housework now which doesn't sound very exciting but I see it as a real progression. I can concentrate better now and read for longer and I have noticed a huge improvement in what was becoming a worrying tendency to forget names and words. I have also managed to halve my thyroid meds and didn't realise I had become somewhat hyperthyroid, which slowed healing down a lot.

    It's a long and tortuous journey and is ongoing, but worth doing considering the alternative. I've mentioned @Freddd a few times and really he has been a life-saver for me (many thanks again @Freddd!), though it has taken me a very long time to absorb the information and the supplements!

    Anyhow that's my experience so far. Good luck.

    P.S. The only thing I need more of compared with @Freddd's regime is B2 (active form is the only form which works for me) and probably a bit more B1, but then I am coeliac and get next to no B1 in my diet and Freddd is not coeliac, though he is hypothyroid like many of us.

    Thanks again @Kathevans for the heads up on B2 and B1. Without your kind message (and posts from @Eastman) I probably wouldn't have tried it. My only caveat is that too much Allithiamine (or any thiamine) may not be helpful for some folk here - my own experience (so far) seems to be similar to Freddd in that regard...

    I should say @nicola I had absolutely dreadful symptoms when I first began small dose B12 injections back in 2014. I was too scared to stop them and I'm glad I ploughed through. Again, that's just my own experience. Things improved as I gradually (painfully gradually!) began to tolerate co-factors. Refeeding continues...
     
    Last edited: Apr 16, 2018
    Kathevans, Eastman and Mel9 like this.
  12. Eastman

    Eastman Senior Member

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    I just want to say that other than Freddd, I was not able to find another source that says that low folate causes oedema. I wonder whether, by keeping his B1 intake low, and bearing in mind the post that I wrote earlier, Freddd inadvertently caused beriberi in himself, of which oedema is a symptom.

    You may remember that there were some case studies where thiamine improved electrolyte balance.

    As for the hair shedding, may not be relevant since you're not a cow but anyway:

    Folic acid therapy for alopecia in a Charolais calf.
     
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  13. aquariusgirl

    aquariusgirl Senior Member

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    I spent years trying to do methylation support of one kind or another.

    Nicola’s story could be my story.

    Looking back, I think it was a mistake.

    What worked for me was 1) trying to get SOD working to try & get a handle on oxidative stress.

    For me that was Copper & zinc ( Mitosynergy copper) .

    I also respond to the things that help pyruvate dehydrogenase....so lipothiamine & ALA.

    My gut doesn’t like ALA..,so I’m trying to get it in a cream.

    I think methylation is collateral damage & we have too much accumulated toxins & infections to crank that particular engine.

    Turns out I have a ton of Oxalates so I’m working on getting that load down.

    But I think Davis & Phair will hopefully tie this stuff together...,
     
  14. Athene*

    Athene* Senior Member

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    I can only speak for myself: after years of oedema, the relief of it draining away within days of high-dose folate was fantastic, and it stayed away once I kept up the folate. Anything that lowers folate for me now brings on oedema within days. When folate level builds up again the fluid drains away quickly (then I need extra potassium for a while).

    I have found that the sweet spot for me with Allithiamine and oedema is 30mg. Any more Allithiamine and I swell up (not all over, just my areas where oedema has occurred for years since the onset of illness). For @Freddd I seem to remember it takes much less thiamine (ordinary form HCL as far as I remember) to disrupt things for him.

    I must look up the dose equivalents of Allithiamine/ordinary thiamine HCL or mononitrate.

    I'm so happy to see the red cell count increasing again and other long lasting symptoms clearing, as mentioned above (and hair growing back! Seems trivial but has a big psychological effect). The Allithiamine at this dose is very good for me.

    I still need tons of B12 and always will, given my pernicious anaemia and B12 & folate faulty enzymes, transporters etc (diagnosed as 'CSF' and 'Fibromyalgia' for 15 years). I may always need a little Allithiamine too. I get next to none in my diet and I'm glad to have it on board now.

    Happily my somewhat elevated ferritin has decreased for the first time in years too. My transferrin saturation has improved to normal. The addition of Allithiamine has helped me to use my iron again. This happened when I first added active B2, but it stopped again a few months ago. I was so glad to see the counts improving since the addition of Allithiamine, and even more so, the symptoms.

    For me it's a case of keeping it to a lowish dose, though maybe it's not that low compared with other forms of B1.

    Yes, interesting about potassium and I'm very relieved not to have to increase it.
     
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  15. nicola

    nicola

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    Hello @aquariusgirl. Can you tell me what you think was a mistake - getting methylation going? I beat you to the oxalates - been there, done that. There is no doubt I have an oxalate problem, but focusing on just one aspect of a multi-faceted problem - chelation, methylation, sulphur, histamine, pyroluria, B12 deficiency - brings one neatly round to the next issue. I am going round in circles, and have been for years. I have "done" oxalates at least twice already, B12 deficiency too.

    Treating thiamine deficiency is relatively new for me, although years ago I did buy some Authia creme, convinced that it would help my POTs. It smelled so bad I stopped using it, and so that was that. I am certainly having a rollercoaster ride with the allithiamine, which means it is doing something. My most recent blood test showed that potassium - at the bottom of the range for years despite supplementation - had gone up by over one point in a couple of months. I am finding that the allithiamine is pushing down my folate though, and where Greg's advice that you don't need extra folate if you are taking B12, only B2, is not true in my case. I worked out at the weekend that the backache I got every day I used the B12 oil was due to lack of folate, and taking a couple of mgs made it vanish. My problem is that everything I treat - methylation, oxalates, allithiamine, B12 - mobilises mercury, and everything leads back to that. I get that, but I don't tolerate the sulfur chelators, so I am really stuck and chronically ill because of that.

    I am also trying the Mitosynergy copper - really don't know whether it is having an impact, as there is so much going on, but I am prepared to give it the benefit of the doubt.

    Who are Davis & Phair?

    @Athene* - thank you for your encouragement and experience. I am glad you have made progress with the B12. I have everything I need to self-inject, but am holding back for now because I am scared. I think it will be the only way I will move forward though. I function reasonably well, although I spend a lot of time on the sofa. I can walk short distances, and travel, but food is a huge problem, so socialising is not much fun. I keep trying, because I keep hoping that I will recover my health, even after 15 years.
     
    Athene* likes this.
  16. aquariusgirl

    aquariusgirl Senior Member

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    I just meant that trying to crank methylation when you have lots of toxins & infections...is sorta pointless if you're doing it in isolation
     
    Mel9 likes this.
  17. brenda

    brenda Senior Member

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    @Athene*

    Are you in the UK, concerning your gall bladder op?
     
  18. Athene*

    Athene* Senior Member

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    Hi @brenda, I don't actually need a gallbladder op (at least I hope not). I'm just guessing really based on symptoms (difficulty digesting fats) that I may have a bile problem, but I'm hoping it might settle when my general health improves. I'm thinking of going for tests at some stage, but there's so much else going on that I'm putting it on the long finger!

    There is another minor op I need but am also putting that off for fear of general anaesthetic ruining any progress I've made over the last couple of years.
     
  19. brenda

    brenda Senior Member

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    @Athene* l was having severe gall bladder attacks after being on a low carb autoimmune diet and doubted l would survive anesthesia but all seems to be okay now since adopting a plant based vegan eating plan. Apparently vegans don't have gall bladder problems.

    I did find out that anesthesiologists trained in India are very familiar with intolerance to anesthetics and there is one working in Birmingham if that helps.
     
    Athene* likes this.
  20. Athene*

    Athene* Senior Member

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    Thanks, @brenda. I'll see how it goes. There's a strong family history of gallbladder removal but I'm hoping to avoid it. I haven't had severe attacks, thankfully. Glad it went well for you.
     
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