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

[Athene*]

Manganese arrived today. The taste test suggests we need it.

Apparently, it didn't quite taste like a lolly, but it wasn't yukky at all.

Thanks to all who have reported progress on the B12 oil and suggested manganese as a possible missing factor.

I'm waiting for manganese to arrive. How much are you taking? I guess you're also using Molybdenum, iodine, selenium (b2?)? Can you say how much of other minerals you take. Or do you use a multi-mineral supplement? (I'm currently working on my minerals)

 

[snowman]

thyroid refuses to play along (still very low t3 no matter what form of thyroid med & supplements I take).

I've been off this site for a long time and occasionally looking around about thyroid and adrenals. Doing the constant stream of active B12s and B2s seemed like making up for what thyroid should be handling in activating these vitamins, then wondering what else the thyroid should be doing that other supplements are being tried to make up for.

For the thyroid, higher doses of iodine and selenium may be interesting to look into. Bill Thompson has done considerable searching and posted an iodine protocol here. For years hypothyroid types were told to stay away from iodine especially if Hashimoto or autoimmune, but it looks like that is changing as long as selenium and some other supplements are in place to protect against further autoimmune damage, also listed in his protocol. Of course a lot of different opinions around about this from different doctors. I am still looking into the -mostly positive - effects of iodine on the rest of the body and am hoping to find it helps adrenals. Have not tried the high dose of iodine yet. Bill says that those who have side effects at low dose may do much better starting at very high dose. Compared to the 50mg in the protocol, iodized salt has about zero.

Isn't selenium one that helps conversion of T4 to T3? A high enough dose, and i've seen up to 1200mcg being recommended by a chemist, may help as long as there's enough T4 to start with. I also heard that if body is low in iodine, that T3 is stripped of its iodine for the cell's use rather than being used as T3. Sorry no handy reference. I just read a chapter about iodine raising T4 and selenium lowering it, presumably by converting the T4 to T3. Again, lost the reference.

For adrenals, unless addisonian, I still run into information on thiamine being much needed, and to get the PPP going. I do recall seeing some small studies of high dose thiamine used in CFS with a level of success.

I can't say I'll be back regularly anytime soon, not doing well enough to keep up here nor to remember to take many supplements. Just on today and tossing out an idea that may or may not have been mentioned in other posts that I haven't had the chance to read.

I see @Johnmac is having success. So good to hear.

 

[Johnmac]

I see @Johnmac is having success. So good to hear.

Yes, I'm still doing okay. Energy 90% fixed, blood sugar response much better, & quite a few other things.

I found that leaving out the methylfolate, potassium & carnitine & focussing on B2 + the B12 oil (adenosyl & methyl) did the trick for me. No more horror-crashes, & much more simplicity.

 

[Biarritz13]

Yes, I'm still doing okay. Energy 90% fixed, blood sugar response much better, & quite a few other things.

I found that leaving out the methylfolate, potassium & carnitine & focussing on B2 + the B12 oil (adenosyl & methyl) did the trick for me. No more horror-crashes, & much more simplicity.

I am impressed!

Only b12 oil +B2?

No Iodine, Manganese, Molybdenum and Selenium?

 

[Athene*]

For adrenals, unless addisonian, I still run into information on thiamine being much needed, and to get the PPP going. I do recall seeing some small studies of high dose thiamine used in CFS with a level of success.

Sorry to hear you're not doing too well either. Thanks for tips. I've read elsewhere the active form of thiamine is good for us CFS folk. Active form of b6 too. Sublingual, in both cases. I might look into it. I've tried high-dose iodine (high for me) a couple of years ago, 6.25mg daily, and had a severe crash that lasted weeks. I took all the necessary iodine co-factors.

I can take a tiny dose only - there is around 100mcg iodine per grain of NDT so that's something. Greg's opinion is that only a very small amount of iodine is needed to make FAD along with b2, selenium, molybdenum, t4 (I use small amount of t4 along with my t3) etc. I've tried it all. Haven't tried manganese yet though, or the active form of b2, sublingually, which @alicec has had success with. I have it on order. Hoping it helps...

 

[CCC]

I'm waiting for manganese to arrive. How much are you taking? I guess you're also using Molybdenum, iodine, selenium (b2?)? Can you say how much of other minerals you take. Or do you use a multi-mineral supplement? (I'm currently working on my minerals)

Just on the basic tablet - 10mg a day.

We're not using Mo. Se and iodine are okay on blood tests. There is a small amount of Se in a multimineral/vitamin. I have used iodised salt exclusively since seeing the 'scare' posters in the paediatric ward in hospital once.

One thing that might interest you is that we were trying to track down the reason for a slightly elevated level of Se last year. In the end, someone dug out an old textbook to find that B6 does something with retaining Se, and we were on a lot of B6 at the time.

 

[Johnmac]

I am impressed!

Only b12 oil +B2?

No Iodine, Manganese, Molybdenum and Selenium?

No Mn or Mo, & 4 brazil nuts a day for Se. I also make sure I cook with iodised salt, 2 oranges a day for C, & B6 & zinc for my pyroluria.

I also take a brain mix for cognition & memory: tumeric, cinnamon, black pepper, cod liver oil, kyolic, lecithin - twice a day - which works nicely. Tho I suspect B12/B2 are the backbone of my cognitive recovery.

 

[Athene*]

Just on the basic tablet - 10mg a day.

We're not using Mo. Se and iodine are okay on blood tests. There is a small amount of Se in a multimineral/vitamin. I have used iodised salt exclusively since seeing the 'scare' posters in the paediatric ward in hospital once.

One thing that might interest you is that we were trying to track down the reason for a slightly elevated level of Se last year. In the end, someone dug out an old textbook to find that B6 does something with retaining Se, and we were on a lot of B6 at the time.

That's really helpful to know. Thanks

 

[junkcrap50]

Yes, I'm still doing okay. Energy 90% fixed, blood sugar response much better, & quite a few other things.

I found that leaving out the methylfolate, potassium & carnitine & focussing on B2 + the B12 oil (adenosyl & methyl) did the trick for me. No more horror-crashes, & much more simplicity.

@Johnmac, when switching from sublingual b12 to the b12 oils, was there a transition period? How long did it take for you to notice an effect/benefit/improvement from the B12oils over the sublinguals? I just ordered some b12 oils and am hoping I don't have the ups and downs I got from the sublinguals and carnitine.

 

[CCC]

@Johnmac, when switching from sublingual b12 to the b12 oils, was there a transition period? How long did it take for you to notice an effect/benefit/improvement from the B12oils over the sublinguals? I just ordered some b12 oils and am hoping I don't have the ups and downs I got from the sublinguals and carnitine.

I hope you don't mind me jumping in here, but we found it a bit of a let down in that we missed the excitement of the big surge from the sublingual B12 in the morning. It was like going from living on caffeine and sugar to living exclusively on a low-GI diet.

That said, the smooth and steady supply of the B12 oil is much better overall. It's also better on the teeth.

 

[Athene*]

I got progressively worse over the last few weeks - profound weakness, unable to walk for even 5 minutes. I began using r5p form of b2 a few days ago and that didn't help much. Today, after 4 months on b12oils and all the multiple cofactor vitamins and minerals, I decided to have a Methyl b12 injection and am feeling a bit better. I'm going to go back to injections for now. Maybe I just need the injections. I have multiple MTRR, MTR ++ snps as well as pernicious anemia

 

[alicec]

we found it a bit of a let down in that we missed the excitement of the big surge from the sublingual B12 in the morning.

I do too so first thing each morning take two Enzymatic Therapy sublinguals along with the oil. Best of both worlds!

 

[junkcrap50]

I hope you don't mind me jumping in here, but we found it a bit of a let down in that we missed the excitement of the big surge from the sublingual B12 in the morning. It was like going from living on caffeine and sugar to living exclusively on a low-GI diet.

That said, the smooth and steady supply of the B12 oil is much better overall. It's also better on the teeth.

No not at all. Thanks for your input. Ah, yeah I could see that downside. Unfortunately, I don't get a noticeable surge from taking mB12 alone. It's only when adding carnitine on top of the other DQ already being there do I notice anything. But my carnitine dosages for me are so fickle.

I do too so first thing each morning take two Enzymatic Therapy sublinguals along with the oil. Best of both worlds!

I thought of the same work around. I'll probably experiment with both.

 

[Athene*]

I do too so first thing each morning take two Enzymatic Therapy sublinguals along with the oil. Best of both worlds!

@alicec Can I ask if you're still doing Fredd Protocol supplements or if you use hydrocortisone or anything else for adrenals? I'm getting such dreadful symptoms last few days, I feel like I've gone back to 6 months ago when I first began Fredd's protocol.

The only thing I changed a few days ago was to begin the Douglas Labs FMN when it arrived and to use less 5MTHF (10mg, and now 8mg, because pee was extremely green and I thought I had too much 5MTHF with the FMN). I swallowed some of the D Labs r5p/FMN (10mg x 4 daily) and put the rest between gum and lip each time.

Today, in desperation, I went back to injecting Meb12 and have decided to use injections as well as the oils for a while, just to see if anything improves. Is that a good idea? Feeling quite scared to be so debilitated again...It began last week before I ever switched to FMN/r5p. I was on 30mg 5MTHF (increasing 5MTHF from 20mg to try to feel better) and the usual three b12oil sprays (two Ado/Me spray, and one Meb12 spray).

@junkcrap50 It would be great if you could possibly say what you're taking in terms of supplements/Fredd protocol etc. I'm wondering why I've gone backwards. So frightening

@CCC as well, if at all possible - could you say what you're currently taking?

Is anyone on thyroid and adrenal support as well as me? Are you folk long term debilitated? I began to get sick in 1998 and have been bed/couch since 2007. Did much better first few months of this year, now reversing

 

[alicec]

Can I ask if you're still doing Fredd Protocol supplements or if you use hydrocortisone or anything else for adrenals?

Have never used hydrocortisone. Mostly I fit the low cortisol profile but at times things go awry and I start producing too much. I am in a too much phase at the moment.

Also in a too much adrenalin phase (fairly common for me but getting a bit out of hand).

I'm mildly hypothyroid with low level anti-thyroid antibodies - untreated at present - just can't tolerate even low level slow release T3 though I intend to revisit that.

I've stopped and restarted Freddd's protocol (well my version of it - never could see the point of SAMe and TMG) several times over the last 12 months or so as benefits have petered out and I've been trying to identify depleted nutrients (or other problems).

In the most recent iteration I have identified minerals (Ca, B, Mo, Mn) and B2 as being limiting and repleting those has brought back the benefits.

BUT my responses are now different and I am much more sensitive and need less to get benefit. I seem particularly sensitive to carnitine and adoB12 and have reduced these doses considerably - sometimes have dropped off entirely as I try to get my sympathetic nervous system under control.

I'm feeling pretty good on 1 pumpMeB12 and moderate folate (dropping to 5 mg was a bit drastic, had to go to 10, but that is much better than 30-40 mg), tiny amounts ado, no carnitine (plus a host of background nutrients) - BUT the sympathetic over activity is not improving and I haven't quite got a handle on what is really driving it. I intend revisiting ado and carnitine.

My feeling is that this new sensitivity is somehow good and may have something to do with introducing LDN. I've tried stopping it and found the sympathetic system got out of control so it's certainly doing something, though don't really know why my sensitivity to B12 etc has increased.

I'm sorry to hear about your deterioration. I'm not as debilitated as you but I can relate to reversals in benefit from the protocol. I've had several.

In general it seems to be from some other nutrient becoming limiting. Quite a while ago I thought I had identified boron and B2 as limitations and for a while, increasing doses of these helped a lot. Then everything stopped working and nothing I tried seemed to make a difference.

I just cut back on the big doses of DQ since they weren't helping and hibernated for a while and regrouped.

It was discussions with @MacGyver (who had originally persuaded me to try high doses of boron) that prompted me to try boron and calcium in combination. I had stopped the high doses of B since they were making me worse and had tried Ca alone as a possible depleted nutrient - it too made me feel worse.

The combination was electrical - suddenly things started working again and I was again getting benefit from the DQ, though I had to redefine dose all over again.

I also had to take huge doses of B and Ca, especially Ca, for a while, as though I was filling a near bottomless well. I just kept swallowing it until more made no difference. I then cut right back - somewhat arbitrarily - but continued a moderate dose. I don't really understand the basis for the combination need - ie why one helps me tolerate and get benefit from the other.

Getting B2 to really work was much more difficult. I have been taking fairly high doses of riboflavin forever but clearly to not much effect.

I think Greg's idea that high folate need means we are not making FAD is correct. Sublingual FMN and increased Mo and Mn seemed to be the key for me (I was already taking a lot of Se, some iodine etc). I still haven't separated the two minerals so can't say if there is a difference, but recently tried cutting back on the fairly high doses - this was a mistake. I'm not convinced I have this going well yet but it is going.

I relate this story not because you are likely to encounter my peculiar depletions but more to illustrate that keeping the DQ going can be difficult (or B12/B2 according to Greg).

Your need to add even more B12 suggests inefficiency in use. Something else is becoming limiting. Finding what this is can be difficult and frustrating but it is worth persisting with.

 

[Athene*]

Thanks so much for this detailed response and helpful comments @alicec. It's very good of you to take the time. I'm in a muddle right now for sure. I've tried (and still use) all the minerals you mention. Just recently added manganese (felt nothing) and will keep at it for a while more. But I've never tried boron so thanks for mentioning that, though I realise we're all different. I'm prepared to try anything at this stage!

I'm currently flooded with adrenalin too and having crazy sweating even immediately after a cool shower. I'm flat on my back all day from the effort of showering. Losing tons of hair again which always manages to get me down because every time hundreds of hairs come out in small clumps (approx 30 stuck together when I comb it gently after shower), it makes me think I'm falling apart. It hasn't happened since last year before the Fredd P.

The injection I had today is causing insomnia and adrenalin surges and it almost feels like 'start up' when I started them two years ago. It scares me to think the oils might not be working for me, but I'm hoping it's more likely what you say - that my system isn't using b12 properly right now.

Sounds like you've had the ups and downs too. It's good to hear you say 'something else has become limiting'. I was forgetting that and now I need to reassess it all.

I must say I was rather worried about this discussion, below, I came across today between Freddd and GaryFritz (it's about pulmonary delivery of b12 which I wouldn't be interested in) - it's the comparison of injections to oils that bothered me. @Freddd seems to be saying the b12 oils don't raise the serum level enough for CSF penetration, though it's all very complex and difficult to read. But @whodathunkit (a great FP success story) mentions she needed 5mg daily Mecbl injections to see results. I've never managed that much without that awful adrenalin reaction you mention (the most I did was 2mg daily):

http://forums.phoenixrising.me/index.php?threads/methylcobalamin-inhalation-therapy.33045/page-6

Are you happy to trust the oils over injections given what he says, or am I reading it wrong. You don't use injections at all now, just the oils?

I was on LDN from 2006-2014. I will check my old diaries and let you know in case of any interest.

Cheers.

 

[Gondwanaland]

I was on LDN from 2006-2014.

I would be interested in why you stopped it and how - tapering? Was it hard?

 

[alicec]

But I've never tried boron so thanks for mentioning that, though I realise we're all different. I'm prepared to try anything at this stage!

I had taken a trace minerals preparation for years and thought I had plenty of minerals. It took a while before I was convinced to try big doses but before Freddd posted his refeeding thread I had decided my problems must be due to depletion of nutrients. When the boron issue was brought to my attention I eventually thought why not.

Boron was spectacular at first then gradually lost effect, then became problematic. Boron plus calcium was pretty spectacular and so far at least continues to be helpful.

Freddd had spectacular results with copper, then went on to add various other trace minerals.

Even though I have had copper accumulation problems in the past I tried copper in desperation. Did nothing for me.

it's the comparison of injections to oils that bothered me. @Freddd seems to be saying the b12 oils don't raise the serum level enough for CSF penetration, though it's all very complex and difficult to read. But @whodathunkit (a great FP success story) mentions she needed 5mg daily Mecbl injections to see results. I've never managed that much without that awful adrenalin reaction you mention (the most I did was 2mg daily):

http://forums.phoenixrising.me/index.php?threads/methylcobalamin-inhalation-therapy.33045/page-6

Are you happy to trust the oils over injections given what he says, or am I reading it wrong. You don't use injections at all now, just the oils?

I have never used injections, mainly because they are prohibitively expensive in Australia (regulated, requires doctor's prescription and preparation by compounding pharmacist).

The closest I have come to big doses was applying 5-10 mg liquid MeB12 (Bluebonnet) mixed in body lotion to the skin. It certainly felt to me like it was absorbed more quickly than the oil (bigger dose too of course).

I was never able to sustain the big doses for long, think I just depleted a host of other things. Since then I have been happy to just get the system going at all and continue getting benefit. Maybe if I get the sympathetic nervous system under control I'll try big doses again, just to see if it makes any difference.

I'm inclined to think that Freddd is right about injections of relatively high dose being necessary to flood the CNS.

Freddd has the perspective of a very ill person who is trying to repair considerable damage. Greg (from B12 oils) has the perspective of a healthy person interested in B12 deficiency. Yes there is an acknowledgement of sick people but this is not his prime motivation.

For many people the drastic measures resorted to by Freddd may not be necessary but I guess none of us will ever know if we could benefit from the CNS saturation approach until we try it. But other than for this heroic approach, I think the B12 oils are the way to go.

I am willing to try it sometime but am nowhere near being in a position to do so. Just maintaining a continuing benefit from B12 is my priority at the moment.

That is obviously your priority too. Maybe when things are more stable and you are able to tolerate big injections, it could be worth trying them for a while just to see if it does make a difference.

 

[Athene*]

Thanks again @alicec I really wanted to stay on injections but it was difficult to get hold of them and like you say, prohibitively expensive. I might be able to get them on prescription now that I have the gene data. I'd feel safer even on 1mg injection daily along with the oil given my multiple and very longstanding b12 issues and hopefully aim for CSF penetration later, as you mention. I promised myself I'd give the oils alone a good try for a few months and then reassess.
My adrenal function is sporadic, like yours. The adrenals themselves are fine but maybe the signal from the pituitary isn't working properly - not sure what's going on, so I want to get as much b12 to the brain as I possibly can. Greg thought the oils would fix the adrenal issue, but I keep reading Fred's posts all the time and try to incorporate both their knowledge bases.

Here's my LDN experience for what it's worth (@Gondwanaland too): I was on it from 2006 to 2014. I came off it when I began b12 injections, innocently believing I had found the answer to my situation (and LDN was expensive). There was no problem coming off it. I just reduced by going without once per week for a few weeks then none twice per week etc. I didn't notice much withdrawal but I didn't notice much when I began it either. Having said that there was a lot of hormonal chaos at the time so it's hard to tell.

Looking back on those years' notes this morning, I did notice a definite improvement in mood. I felt more optimistic and had increased mental energy and I was able to concentrate more. Not much increase in physical energy (but I wasn't so debilitated then as I am now - able to get out and about by pacing myself carefully, not much difference after LDN and I gradually got worse PEM which stopped me going out much at all). Not much pain relief (a lot of muscle pain, 'fibromyalgia' type pain), and I had trouble sleeping so had to reduce from 4.5mg to 3mg (or 3.5 - not sure) and that helped sleep.

The thing is LDN might have helped more if I was on b12 at the time (high b12 serum led to doctors' believing I was fine). I was on thyroid med then (100mcg thyroxine which wasn't helping much - low t3, high TSH) and I was diagnosed with coeliac disease in 2010 after being on LDN since 2006 which surprised me because if anything, I thought it would control any stomach antibodies, given its history of success with Crohns.

However I have seen lots of people on the thyroid forums saying it helped them hugely with inflammation and with reducing Hashi antibodies so hopefully you will do well on it, especially with the thyroid and adrenalin issues. I never had thyroid antibodies (at least on tests). I had no liver problems whatsoever (doctor said with some people LDN can raises liver function tests) and I was on it a long time.

I sometimes wonder if I should go back on LDN now that I'm on b12 and NDT and if dropping LDN made me get worse. I will have a difficult job convincing the doctor to re prescribe it though having told her I don't want it anymore in 2014. Should have kept my options open...

You may do better than I did with it, now that you're supporting everything else.

 

[Athene*]

@alicec Can I ask if you use sublingual B6/p5p as well as B2/r5p?