Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

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. Kathevans

    Kathevans Senior Member

    Messages:
    613
    Likes:
    508
    Boston, Massachusetts
    @CCC I've been on and off carnitine (LCF) since last fall, on and off folate, on and off the Adenosyl/Methyl Oil--sometimes it was too intense and caused too much IBS. Not to mention up and down on many things. Each time I titrate up and down, I learn something more, perhaps something different because I may have added yet another mineral--which I've been working on for a couple of years now.

    Bottom line is that I come back to things Freddd has said, that if you hit upon the most needed thing in your body, your symptoms will miraculously (to me) disappear. Maybe only for an hour or so. But if you pay attention, you'll gradually learn a thing or two and begin to address what you body wants in a particular moment--because let's face it, it DOES change.

    I've been as high as 25mg of Folate /day and have taken as much as 1 1/2 of the Doctor's Data L-Carnitine tablets in divided doses, and as high as four squirts a day of a mix of Methyl and Adenosyl/Methyl Oil. But two major symptoms for me currently are IBS and insomnia, and what I've found is that when I'm awake in the middle of the night for those 2 or 3 or 4 hours, struggling to get my 4 or 5 hours of broken sleep, any one of the DLQ can send me back to sleep within a half hour or so--if I hit on the right one and haven't already overdone one of the others!

    So I divide the LCF into 4 and take two of them a day, roughly 400mg, as so much of that pill gets lost inside the capsule and on the counter!--I'm down to 800-1600mcg of folate (right now high folate causes 24hr IBS; I just learned that and stopped and felt weird and miserable for a day or so); and 3-4 sprays of the oils.

    Last night after sleeping for about 2-3 hours, I acted cautiously, and used the Methyl Oil--the most benign of the DLQ for me always--and yet stayed awake and continued to stay awake. Then, though it was only two hours later, I used the Ado/Methyl Oil--this has often been the case for me, even back when I was taking the 3,000mcg Seeking Health Adenosyl B12 sublinguals--that taking a bit of Ado would enable me to go back to sleep. And so it did, for another 2 hours of deep sleep.

    Just to clarify as to my particular situation and why I understand via Freddd that this is what will work for me -- in his Symptoms List (and this is probably not the most recent one): http://forums.phoenixrising.me/inde...ylation-and-healing.21725/page-24#post-875739 , while I have many many symptoms, I am most soundly in two categories in terms of the DLQ and my body's needs:

    L-carnitine fumarate – AdoCbl – MeCbl – Metafolin

    mild to extremely severe fatigue
    continuous extremely severe fatigue
    easy fatigability
    severe abnormal muscle fatigue up to and including apparent paralysis leading to death
    weakness
    muscle pain especially around attachment points to bones
    Eighteen severely tender muscle spots of FMS

    And:

    AdoCbl – L-carnitine fumarate

    exercise debilitates for up to a week, making things much worse
    accumulating muscle pains following exertion
    sore muscles throughout body
    lack of muscle recovery after exercise
    High urinary MMA (though, past testing didn't show this as a problem)

    The boldface is mine.

    When I first developed a host of symptoms (rather than the isolated and seemingly unrelated ones I'd had for years), I told my doctor that whenever I lifted weights at the gym my muscles hurt --neck, arms, legs--and she said I was lifting too much weight. But, I told her, these were the same 10-20pound barbells I'd been lifting for a decade.

    This was six months out from a cycle long term of antibiotics I'd taken for an infection on my foot. This was 20 years ago.

    So maybe, this particular combo might be of help to focus on--depending on your symptoms. Since September the Carnitine has often been too intense, but I keep coming back to it. Most recently when I re-introduced it, I had gut cramps for the first day till my body readjusted to. I won't stop it again for a while, though I would always consider adjusting it up or down. Without it, I have no impulse to s-t-r-e-t-c-h! With it, stretching is glorious.

    As I recall, @Johnmac used a liquid form of Carnitine and titrated up. It might be in one of these threads, but I'm not certain...

    http://forums.phoenixrising.me/index.php?threads/first-experience-with-l-carnitine-fumarate.35857/
    http://forums.phoenixrising.me/index.php?threads/carnitine-freddd-protocol.43666/

    And a part of another thread:
    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-21 (and the section I actually copied, which relates to your question:

    So that we can compare carnitine doses across varieties I use the “carnitine” mass of 500mg rather than the fumarate mass of 855mg. Carnitine has 3 forms we may be dealing with and 2 main alternatives so we have to be able to compare amounts across multiple forms.

    IF person has anxiety do microtitration, starting at 33mcg for 3 doses a day each time on empty stomach with the Jarrow Liquid Freebase carnitine, and increase 10% a day as tolerable.

    IF person doesn’t have anxiety do a regular titration starting at perhaps 20mg (approx) for 3 doses per day. The first form to try is L carnitine fumarate such as Drs. Best, Jarrow, Swanson (all Sigma Tau carnitine) or other such vitamin brand. To start with add 20mg a day, either as another dose or another dose starting with the earliest one. Fumarate will be about 90% of people, ALCAR 10%. One will typically work like gangbusters, the other won’t and a mix doesn’t work either, typically. Try the other kind after reaching 125mg daily total with no effect, starting over on amount.


    Good luck!
     
  2. Kathevans

    Kathevans Senior Member

    Messages:
    613
    Likes:
    508
    Boston, Massachusetts
    And one last thing in regard to different responses to the different oils or kinds of B12. Last night when I'd used the regular Methyl Oil and it didn't put me back to sleep, I began to have what I learned from @garyfritz are called fasciculations in my gut. Those body jerks, sort of like a hiccup. A couple of years ago there were nights when I probably could have counted a hundred of such jerks. Yikes. Needless to say, this was disturbing --and I had no idea what it was.

    Those are largely gone now, but last night after the Methyl Oil, I had two or three and I knew I needed B12--but apparently not the one I'd just taken. I used the Ado Oil, and, as above, I fell asleep. And no more jerking.
     
  3. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
    Hi @Kathevans
    Thanks for your message. Just to add my dreary LCF experience:
    I'm at a similar place to where you are. I'm on the full protocol now. Everything in place according to what @Freddd advises, and @Freddd if you're around, I would really appreciate any advice.

    I'm trying very slowly to increase Ado & LCF and being plagued with insomnia and dreadful IBS as a result as well as awful fatigue and drowsiness (my low potassium symptoms) and body aches (my low folate symptoms).

    The only thing that helps is cutting right back on the Ado & LCF which defeats the purpose. Since titrating vit D and magnesium over the past months (huge insufficiencies) I can't seem to manage the LCF and Ado potassium demand like I used to. I really need to build muscle strength so it's really frustrating. I have managed to get to 1/3 daily of 10mg Ado tablet but only 1/16th of LCF 500mg (855mg Doctor's Best brand) so it's about 31mg of 500mg (or 53mg of 855mg) of the LCF.

    I'm still at my usual 30mg folate daily and I inject 20mg B12 daily. I need masses of potassium to avoid palpitations and muscle cramps (now 50mg daily which is very very tedious) and when I try to take even a tiny bit more Ado or LCF the potassium demand rises sharply. I'm not taking anything which Freddd advises against (e.g. B1, B2, B3, inositol, biotin etc in excess) so I don't know why my potassium demand is so relentless.

    It's definitely the Ado and LCF that are causing this chaos but I do find my word loss and concentration have improved to my normal function now so hopefully the Ado & LCF are stopping me from going gaga, along with B12 injections etc etc. Also tinnitus has almost gone and hearing loss has gone away. So I need to remember these good things.

    But I am bored out of my mind being isolated and housebound again with fatigue and weakness from low potassium and flu like aches and lightheadedness from low folate, since titrating Ado & LCF. I can't afford any more folate than 30mg daily and even that is becoming a struggle.

    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.
     
    Last edited: Feb 20, 2018
    Kathevans likes this.
  4. Eastman

    Eastman Senior Member

    Messages:
    457
    Likes:
    429
    Maybe you haven't depleted your aldosterone precursors?

    Or you could do what @Kathevans did and try B1.

    Edited to remove link to paper.
     
    Last edited: Feb 20, 2018
    Kathevans likes this.
  5. CCC

    CCC Senior Member

    Messages:
    427
    Likes:
    548
    Thanks everyone for your feedback.

    ALCAR casuses no crash, by the way. We think it helps brainfog in combination with microdoses of huperzine, but there is otherwise no obvious benefit. It is only L-carnitine fumerate that causes problems.

    The great carnitine crash of 2018 (as we've now called it) did a few things - massive increase in methylfolate and adenosylB12 for a few days, serious zinc and molybdenum depletion, and (of course) fatigue. Also followed by a massive herxy style passing of excess materials (TMI?) - we're fighting Bartonella as well.

    I was reading that you need taurine to support carnitine in the body - and perhaps the carnitine chewed through the taurine and caused the crash. Taurine deficiency looks remarkably like the symptoms my boy had.

    So, how to test?

    We were using these amino acid things in footbaths at one stage (thanks to Ahmo), and he said he could feel the difference, but we stopped once he started eating better.

    Maybe it's time to give that a go again.
     
    Athene* and Kathevans like this.
  6. Kathevans

    Kathevans Senior Member

    Messages:
    613
    Likes:
    508
    Boston, Massachusetts
    @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?
     
    Last edited: Feb 21, 2018
  7. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
    Thanks @Eastman Funnily enough my cortisol has become high (I used to have to have to take hydrocortisone for idiopathic low cortisol, before this protocol) so adrenal cortex hormones like cortisol & aldosterone are certainly impacted by this illness.

    My low cortisol and aldosterone symptoms used to be similar to diabetes insipidus for which I tested negative. Thankfully that's all gone away now. But cortisol can use up potassium as far as I know...

    These days potassium demand is reasonable (2.5 to 3K) without the Ado & LCF. It's that pesky twosome that's escalated it.

    As for the B1 - yes, I see where you're coming from and I did try the active form for a couple of months. Unfortunately it escalated the potassium demand even more in my case, to the point where it became insatiable. I may revisit it because I am coeliac (undiagnosed until age 40) and can't eat grains and I know @Freddd is not and he eat plenty of homemade wheat bread etc. I do take 15mg thiamine in B Complex. And I need a tiny amount of active form of B2 (normal B2 doesn't work for me at all) but too much increases potassium & folate demand.

    I hope some of this is useful to you or anybody else. Any suggestions welcome.

    Just to update yesterday's post (for @Kathevans too). I thought I was on everything at the correct dose (doses that worked for @Freddd but just to check my magnesium level, I decided to up the dose significantly (I doubled it to see what would happen). 30 minutes later I fell deeply asleep for 7 hours and have had energy today. I've been using a UVB lamp for vitamin D, so it seems my magnesium has dropped again. I'm hoping that if I manage to raise the magnesium, the potassium will settle...

    I have been trying to raise vitamin D since last year but every time I tried even 400mcg daily I wouldn't sleep for weeks at a time (except for a few broken hours every couple of days, sometimes days with no sleep). My blood test for D3 showed I had reached 200nmol/L (from 75 nmol/L) within a few weeks (on 4K iu daily at the time), but even at 100nmol/L symptoms were intolerable, especially insomnia. Since adding high dose magnesium I had been able to maintain good level of D without symptoms until the magnesium ran out again. I need more.

    I'm keeping LCF & Ado at minuscule doses until I settle on D & magnesiium and then see how I go. I had pernicious anaemia for decades, undiagnosed (retrieved old hospital files when I became aware of problem in 2014) so I may never recover fully, but I am hoping that I will regain normal function as @Freddd did. I have multiple SNPs too that interfere with processing of B12 & folate. I have had some short phases of high energy and almost normal life since starting all this so I'm still hopeful.

    P.S. @Kathevans you mentioned B6 in a message. I take sublingual p5p 25mg daily to help with magnesium absorption etc.
     
    Kathevans likes this.
  8. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
    P.S. @Eastman I would be surprised if I hadn't exhausted those adrenal precursors which Greg (B12 oil guy) always warned about when beginning B12, but anything is possible with this disease. I do remember he wasn't fully committed to that theory later, but perhaps he's done more research to confirm it since? @Freddd has a theory that our electrolyte imbalance particularly in relation to potassium is that we are genetically predisposed to have problems moving potassium from tissue to bloodstream quickly enough. All I know for sure is that I am sick to death of swallowing the stuff.

    I've been injecting high dose B12 since end of 2015 (edit, I got the year wrong). At first I would almost pass out with even the tiniest injection and had dreadful high adrenalin symptoms for two years...high blood pressure, sweating, especially, but I pressed on and kept raising B12. I was bedridden and desperate. The blood pressure was dangerously low before beginning B12. The potassium controlled the high blood pressure, but only just. I was going to have to think more about blood pressure but thankfully magnesium has helped hugely.

    I don't have those symptoms now and hope they stay away. Blood pressure dropped very quickly and obviously with magnesium supplementation. I do get palpitations occasionally when low in potassium though mostly it's knife-like muscle pain and really bad mood.
     
    Last edited: Feb 25, 2018
    Kathevans likes this.
  9. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
    Interesting about the zinc & molybdenum. I must check my doses of those again. How much zinc & molybdenum do you usually take?
     
  10. Eastman

    Eastman Senior Member

    Messages:
    457
    Likes:
    429
    Apart from Freddd and richvank's view that increased potassium need from methylation comes from increased cell formation, there is nandixon's view that when you overdrive the methylation cycle, you get "an aldosterone-related effect via increased methylation capacity". That may be what Greg Russell Jones was referring to as cited by Athene in explaining the increased potassium need.

    Potassium deficiency symptoms include weakness, nausea, palpitations (see here).

    Magnesium plays a significant role here.

    [Aldosterone and magnesium]
    But apart from potassium and magnesium, vitamin B1/thiamine also appears to be depleted by increased aldosterone.

    Influence of spironolactone therapy on thiamine blood levels in patients with heart failure
    Thiamine deficiency symptoms include fatigue, abdominal discomfort and tachycardia (see here)
     
    Athene* and Kathevans like this.
  11. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
    Just to update: Doing well on magnesium supplementation (need a lot i.e. 4 times what I was taking. Was taking 100mg transdermally, now 400mg of magnesium oil. And as far as I know that's 80% absorbed transdermally compared with max 2% from oral supplements so it's a lot of magnesium). Slept well again last night, awake 6.30am, went to sleep 11pm.

    Have needed 50% less potassium last few days since upping magnesium intake (using the transdermal magnesium oil, to save the stomach having to ingest more fillers). No muscle aches, no palpitations, no sudden weakness, insatiable thirst, too much peeing, or mood changes (my usual low potassium, increased aldosterone symptoms). Don't know how long it will last. Until the next insufficiency I suppose. Am very happy to be able to reduce potassium to more reasonable level at last.
     
    Kathevans likes this.
  12. juniemarie

    juniemarie Senior Member

    Messages:
    381
    Likes:
    162
    Albuquerque
    @Basilico I have not started B12oils yet as Greg says I need to get my iron up so I’m taking Solgar Gentle Iron which I believe you recommended. Do you only take one a day?
    I’m a bit confused about which form/brand of Selenium everyone is taking??
    Right now I’m just doing the iodized salt and iron. Did you guys add each of the supplements in a certain order?
    How did you decide which one of the B12 oils to use?
     
    Basilico and Sushi like this.
  13. Kathevans

    Kathevans Senior Member

    Messages:
    613
    Likes:
    508
    Boston, Massachusetts
    @Athene* So happy (and a bit jealous!) of your sleep relief. What brand of transdermal magnesium are you using? Interesting that it reduced not only potassium need (I'm currently taking up to 2500, though sometimes less), but also too much peeing...

    @Basilico I don't know if the order of supplements makes any difference; I think we address them as we hit upon them! I've found BodyBio drops to be very handy and very amenable to titration. I still use a mix of them (iodine/ copper/ selenium and in my initial use of molybdenum and zinc) twice a day with lemon juice and potassium and vitamin C. I just got some chromium to experiment with....
     
    CCC and Basilico like this.
  14. Basilico

    Basilico Florida

    Messages:
    942
    Likes:
    2,120
    I do use and recommend the Solgar Bisglycinate (Gentle Iron). When I first discovered that my ferritin was practically nonexistant, I started supplementing with Solgar and repeatedly retested my ferritin every couple of months. My levels steadily increased. When I switched to another brand (don't remember the name but it was from Whole Foods) my levels not only stopped increasing but actually dropped. When I switched back to Solgar my levels went up again.

    When my ferritin was at its lowest (11) I started taking 4 per day, 2 in the morning, 2 at night. It never gave me any stomach upset even at these high doses, but you don't need to take this much. My very unscientific way to decide how much to take is that I take just enough until my poop starts turning really dark. This is a sign that the excess iron is being excreted and upping the dosage would probably be a waste. At this point, 1 or 2 per day is usually enough to reach this point, so that's what I'm taking now.

    The most important thing is to take it with some ascorbic acid (Vit C) and a little sugar. This could be a glass of OJ or fruit or some ascorbic acid with a teaspoon of sugar. This combo greatly increases absorption of iron.
     
  15. juniemarie

    juniemarie Senior Member

    Messages:
    381
    Likes:
    162
    Albuquerque
    @Basilico Thank you and I am taking it with the ascorbic acid and sugar. Are you still taking the B12 oils?
     
  16. Johnmac

    Johnmac Senior Member

    Messages:
    716
    Likes:
    427
    Cambodia
    Kath, I used the Jarrow liquid carnitine for a bit, but the side-effects were bad for me, so that was that.

    I've been on the B12 oils for a couple of years, & don't find I need the carnitine any more anyway.

    Nice to hear from you - hope all is improving.
     
  17. Johnmac

    Johnmac Senior Member

    Messages:
    716
    Likes:
    427
    Cambodia
    Hi CCC,

    I improved my horrendous carnitine symptoms by taking the Jarrow liquid carnitine in place of LCF; I got some gains but the gains didn't last long.

    Not long after that, I switched to the B12 transdermal oils, which have been much better for me - way less complex & much less of a rollercoaster.

    I added quite a few of the Selfhacked CFS ideas into the mix about a year ago, & now I don't have much CFS left. Tho what was the decisive factor I can't say. Perhaps all of it.


     
  18. Johnmac

    Johnmac Senior Member

    Messages:
    716
    Likes:
    427
    Cambodia
    I found Greg's oils have worked very well, but you do need the B2 with it or it doesn't work as well. If you don't eat dairy you need to supplement it.

    For me, the oils have been a much smoother ride than the sublingual.

     
  19. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
     
    Last edited: Mar 7, 2018
    Kathevans likes this.
  20. Athene*

    Athene* Senior Member

    Messages:
    316
    Likes:
    230
    @Kathevans Did I post above correctly? Hopefully you'll see it ok.
     
    Kathevans likes this.

See more popular forum discussions.

Share This Page