Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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. Johnmac

    Johnmac Senior Member

    Messages:
    716
    Likes:
    429
    Cambodia
    Just to reiterate the rationale for taking more B2 with your ado & Me B12 - & less or no folate, carnitine & potassium - for those who haven't seen it:

    B2-deficient people (a fair few of us are, especially if we don't consume animal protein and/or dairy) can't recycle folate through the methylation pathway, so standard amounts of folate don't work - you need very big doses. That is the only way you can get the methyl groups from the folate cycle. You may sacrifice tons of methylfolate just to get one methyl group.

    This can result in 50-100 times the amount of folate in the cell that the cell needs, which deranges folate cycling.

    Similarly, if you're B2 deficient, you use up tons of B12, because you need the B2 for MTRR.

    In the organic acids (OAT) tests, there is a high tendency for people with CFS to be B2-deficient. CFS isn't a B12 problem: it's a B2 and B12 problem. You also need C, selenium, & a bit of iodine to make T3 & T4.

    If you get enough B12 (transdermal provides maybe 80% penetration; injections more), & add B2, you should only need small doses of folate - 1-5mg/day or less. If you are then methylating properly, you should make your own carnitine.

    I don't comprehend all this, nor can I prove it's true (tho it's working for me so far). But it seemed important to at least provide the theory for examination.
     
    Last edited: May 13, 2016
  2. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,944
    Likes:
    4,015
    I have learned the hard way that B6 can deplete B2 and vice-versa.
    This is not a confounding factor. It is exactly the same situation of B2/B6 depletion. Niacin is the vitamin that when in excess will increase Hcy. And high histamine (and oxalate) foods will increase the need for B2 and B6 (co-factors of MAO-A and DAO respectively). Take a look at the link in my sig Citric acid cycle chart
     
    dannybex and Kathevans like this.
  3. Kathevans

    Kathevans Senior Member

    Messages:
    626
    Likes:
    517
    Boston, Massachusetts
    I think I'm learning the hard way, too. Down the rabbit hole again.

    I'm grateful for your voice of reason. But finding a balance at any level seems like a challenge...that is with foods or with supplements.
     
    Gondwanaland likes this.
  4. Athene*

    Athene* Senior Member

    Messages:
    324
    Likes:
    238
    Yes, do ask him @Johnmac, if you think of it. He was quite firm about the green colour being important. I should have asked him why exactly, but there were other questions re OAT I needed him to focus on.

    Sorry to hear about the blood sugar. High cortisol comes to mind, but then you came off hydrocortisone so likely not that, though if you've gone the other way with cortisol it could be (this has happened to me & others on the adrenal sites who previously had low cortisol). Of course mightn't be anything to do with you.
    Mine blood sugar is usually 4.5 to 5 but it can go up a few points when I'm hyperthyroid or have high cortisol
     
  5. Athene*

    Athene* Senior Member

    Messages:
    324
    Likes:
    238
    Glad you had some good moments @Kathevans :) I hope they continue. I get it re the mood swings and feeling like you've had enough only to rally the next day. The elation thing is interesting. I had that the other day and it happened about 20 years ago when I was briefly hyperthyroid (before becoming hypothyroid). Turns out the b2 is really revving things up for me and from today's blood tests I have far too much cortisol (even though I've come it for a few days now) and my TSH is zero. Big drama today with lab ringing doctor and doctor ringing me and then ringing the endo. I'm not sure if I'm really hyperthyroid or just have a suppressed tsh from the t3 (tsh suppression panics the doctor). I'm waiting for the t3 result. But the point is that the b2 is certainly having marked effects on my metabolism (and mood). Even while feeling achy and weak (perhaps hyperthyroid, or maybe just high adrenalin and suppressed tsh) I felt quite happy in myself and optimistic about things. I'm not achy and weak today. I feel really good. The doctor is so annoying!
    About the iodine - do you mean mg or mcg (just curious).
    So I've finally ordered the 23andme. I envied your gene & snp knowledge! I do hope there won't be any nasty surprises. Not sure how much more I'm able for...
    'Weak thighs' you said - now that's a classic hyperthyroid symptom for me (as well as unexpected moments of elation) and now that you say it, I've had both in the past week. I wonder if your b2 is revving up your thyroid too? Or could it be adrenalin I wonder? I wonder, I wonder. I'm sick of wondering! I'll know more about whether it's hyperthyroidism for me when I get the t3 result in a few days...
    Other news: have managed to significantly cut potassium & 5MHTF. Anyhow, 'We'll see' :)
    Have a good weekend!
     
    Last edited: May 17, 2016
    Kathevans likes this.
  6. Athene*

    Athene* Senior Member

    Messages:
    324
    Likes:
    238
    Interesting. Thanks for the link - my husband's were watering like crazy today. Must try him on the b2...Yep, the green pee dilemma continues. Greg was definitely puzzled I hadn't had it, and said another person hadn't had it until five weeks, so it looks like something significant for some people at least. I must question him again about the reason. There was a lot going on at the time. Isn't there always? Might even pee purple next...nothing surprises me anymore...
     
    Kathevans likes this.
  7. Kathevans

    Kathevans Senior Member

    Messages:
    626
    Likes:
    517
    Boston, Massachusetts
    I spent the afternoon at the doctor's myself...though didn't find out anything other than the recommendation to pull back on the B2. This was the allopathic doctor, of course. I have to wait a couple of weeks for the alternative... My face and ears are bright red and it feels as if I've taken niacin even though I haven't outside of the normal amount. I wonder if it's something else entirely going on...my mycoplasma or one of my viral things or bacterial issues....

    @Athene* The weak thighs are just loss of muscle mass, I think, and lactic acid buildup. My legs always feel weak with exertion, even climbing the stairs in the house.

    So much to figure out.

    Oh, the iodine is 210 mcg. Very small amount.
     
    Last edited: May 14, 2016
    Athene* likes this.
  8. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,944
    Likes:
    4,015
    Pay attention to the things that create an increased need for B6, i.e., oxalates and every B vitamin...
     
    Kathevans likes this.
  9. dannybex

    dannybex Senior Member

    Messages:
    3,270
    Likes:
    2,314
    Seattle
    Thanks for the chart @Gondwanaland -- good job. :)

    I'm not sure I understand your point though regarding histamine and niacin. It's my understanding that the reason niacin increases Hcy is because it depletes methyl groups, which have at least some effect on histamine.

    p.s. Even after a year or more of B2 I still can't tolerate any B6/p5p, but haven't tried it in a month or so, so maybe I should take the plunge, as my OAT test showed I was an endogenous producer of oxalates.
     
  10. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,944
    Likes:
    4,015
    By depleting methyl groups it will burden B6 because "someone" has to work to turn Hcy into Met! B6 is a vital anti-oxidant in this instance. However, the other function of B6 is to activate DAO, but converting Hcy into Met is probably more important, so you will lack DAO and histamine (and other amines) will build up.
    What symptoms you get?
     
  11. Oci

    Oci Senior Member

    Messages:
    261
    Likes:
    77
    How about taking enough B6 to do both jobs? I am taking 50 mg P5P twice a day. Also taking 100 mg B2 once a day. I'm not sure what the ratio should be. I seem to be tolerating both.

    I wonder what my Hcy is now after adding more B6? It was 9.7 when last tested. It was @6 I think some years ago when I was taking CoQ10 for migraines. How would I determine if I "need" CpQ10 for other reasons? Any tests?
     
  12. dannybex

    dannybex Senior Member

    Messages:
    3,270
    Likes:
    2,314
    Seattle
    In the past, 'stocking-glove' tingling in my toes and feet, but more recently, whole-leg jerks and kind of an RLS-ish-ness both in bed and out. My quinolinic acid level was elevated on the OAT, which is ironically lowered by B3, but increased with B6 -- so that may be why I haven't been able to tolerate it.
     
  13. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,944
    Likes:
    4,015
    If you get this from B6, it could be that your Ca-Mg balance is disrupted (assuming that you have always taken adequate amounts of Magnesium with your B6). Have you ever tried calcium/B5? I will have to look up what quinolinic acid is.
     
    Last edited: May 16, 2016
  14. dannybex

    dannybex Senior Member

    Messages:
    3,270
    Likes:
    2,314
    Seattle
    Magnesium always makes any twitching, cramping worse, so I tend to go w/calcium every once in awhile. I just ordered some pantethine, as I have dislipidemia as well. Quinolinic acid is a neurotoxin with many nasty qualities.
     

    Attached Files:

    Gondwanaland likes this.
  15. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,944
    Likes:
    4,015
    I find pantethine so soothing (anti-histamine properties?) and sometimes take it for 3-4 days in a row at bedtime. The dosage that I found to work best for me is 1.5 mg (one point five milligrams) - down from 12 mg, 6 mg and 3 mg. It makes me sleep like a baby :sleep: But lately it has been causing me low B2
     
    dannybex likes this.
  16. dannybex

    dannybex Senior Member

    Messages:
    3,270
    Likes:
    2,314
    Seattle
    "Soothing" would be nice. That's a tiny dose though. Not sure how you can determine what's causing what? Are you taking it sublingually or with other supps…or…?
     
  17. Kathevans

    Kathevans Senior Member

    Messages:
    626
    Likes:
    517
    Boston, Massachusetts
    @Johnmac How much folate do you need now that you've raised your B2 levels along with the B-12 Oils? I'm still trialing the Oils, but felt I'd raised the B2 too high--60mg/day--without resolving the muscle tightness that is one of my most uncomfortable symptoms. Now with 35-40mg B2 I'm starting over once again. This time with more folate. Of course I've struggled with head buzzing weirdness with high methyls, but the other thing that has held me back from higher folates and B-12 is the fear of the potassium issue. I know Greg says we should be able to get the potassium we need from food--and I do eat lentils, try to have an orange a day (though I hate the sweet aspect of it and would prefer not to have it), drink a glass of coconut water with dinner (but feel the same way about the sweetness). So, how much potassium do you take along with your protocol. I know it's individual, of course, but when I cut down this time, I discovered that I didn't need as much as I'd been taking--which was about 300mg 4-5x/day, so 1200-1500mg or so. And it's certainly given me reflux as well.

    But the potassium worries me particularly because I did once lose my electrolytes once during an episode of the flu where my alternative guy was saying it was nothing but detox and just drink more water. If my husband hadn't been home, I would have died on the bathroom floor. As it was, by the time he got me to the emergency room (he thought I was having a stroke), I had a grand mal seizure and was in a coma for three days while they slowly titratated saline into me... Frighteningly, I remember none of it till I began to wake up, which occurred over the course of several hours on the third day. My husband's stories of me lying in restraints while 'there was no there there' in my eyes are a little unnerving.

    I don't want to push too hard as I know I have mitochondrial issues--viruses & heavy metals. I see you did Cutler's for 3 years. Is there a thread where you talked about your experience?

    Thanks so much for your thoughts...K

    Hi to @Athene*--I hope you are progressing. This back story reveals reason for my reluctance to just dive in, I think!
     
    Athene* likes this.
  18. garyfritz

    garyfritz Senior Member

    Messages:
    571
    Likes:
    322
    @boohealth, sorry -- somehow I didn't see that you tagged me, and I just discovered this thread.

    Please don't take my experience as representative. Even though Greg says I have a classic CFS-type genome, I have never actually had CFS. I never had problems with low energy, exercise intolerance, etc. I have some maddening symptoms that drive a huge appetite for B12, and I might have slipped into CFS symptoms if I hadn't lucked out and discovered B12. I'm theorizing/hoping that the B12 is preventing nerve damage that might otherwise have turned into CFS. In any event, Greg doesn't understand my voracious need for B12, and my situation seems to be different to most people's.

    Interesting. I also have low temp (usually about 97.2°F / 36.2°C, vs. "normal" 98.6°F / 37.0°C), many hypothyroid symptoms, cold hands/feet, etc. On Greg's recommendation I've been nibbling 4-5 brazil nuts per day along with enough iodized salt to get 50-100% of the US RDA, but that's only 150mcg for adult men. Your husband was taking more than 80x that much. (But I was confused by your wording... his problems were "fixed within weeks" after taking iodine "for a year or so" ??)
     
    Athene* likes this.
  19. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,944
    Likes:
    4,015
    I have tested each supp separetely taking them on their own for a few days. B5 never workerd during the day for me, always made me sleepy, but worked wonderfully at bedtime. Unlike Taurine that made me sleepy during the day and sleepless at bedtime.

    Did you have a high protein diet when you supplemented with B6? B6 loves lysine.

    I think we are chatting in a wrong thread :redface:
     
    dannybex likes this.
  20. Athene*

    Athene* Senior Member

    Messages:
    324
    Likes:
    238
    Doing great, thanks, Kath @Kathevans. Managed to reduce 5MTHF again (now 18mg from 40mg) and potassium (now 1,600 from 3,500). One of the key issues for me has been the thyroid - getting enough t3 and t4 in as well as the b2, but the b2 has really helped get the thyroid level up. Of course I understand - don't just jump in. Those dropping to the floor events I had (unable to get up with banging heart and paralysed muscles) were electrolyte issues too. I thought I was going to die. I didn't even know about potassium at the time. But I am so relieved not to have to ingest so much now. That was a dreadful experience you had. Hope things progress well for you soon :)
     
    Last edited: May 17, 2016
    Kathevans likes this.

See more popular forum discussions.

Share This Page