Help with Genes, Intolerant of Methyl-B12/SAM-e, Freddd

[alicec]

Can I ask should I increase Thiamin (should it be a particular kind?) if I'm taking high-dose Biotin

I don't know of any direct connection whereby increased biotin would create an increased need for thiamine. I did a quite Google and did find a rare inborn error of metabolism which affects a thiamine transporter. The disorder responds to high dose biotin. I tried to find out more about the mechanism but couldn't.

There could be an indirect link in that both cofactors are critical in energy pathways. If high dose biotin were stimulating these, this might increase demand for thiamine.

I haven't experimented much with thiamine. When I decided to stop taking a B complex and try varying amounts of the individual components (mainly because of oxalates and B12/folate), I just followed Susan Owen's recommendation's re oxalates.

She favours allithiamine, a fat soluble form which crosses the BBB. The fat soluble properties mean it is released more slowly that water soluble forms and makes it hang around longer.

I have just taken 1 x 50 mg daily.

It could be worth experimenting with but there have always been more pressing things for me and I haven't got around to it.

will Biotin increase need for potassium

I haven't found this myself but I imagine there could be individual variation.

 

[Athene*]

I don't know of any direct connection whereby increased biotin would create an increased need for thiamine. I did a quite Google and did find a rare inborn error of metabolism which affects a thiamine transporter. The disorder responds to high dose biotin. I tried to find out more about the mechanism but couldn't.

There could be an indirect link in that both cofactors are critical in energy pathways. If high dose biotin were stimulating these, this might increase demand for thiamine.

I haven't experimented much with thiamine. When I decided to stop taking a B complex and try varying amounts of the individual components (mainly because of oxalates and B12/folate), I just followed Susan Owen's recommendation's re oxalates.

She favours allithiamine, a fat soluble form which crosses the BBB. The fat soluble properties mean it is released more slowly that water soluble forms and makes it hang around longer.

I have just taken 1 x 50 mg daily.

It could be worth experimenting with but there have always been more pressing things for me and I haven't got around to it.



I haven't found this myself but I imagine there could be individual variation.

I can't thank you enough for your updates on Biotin @alicec . I had a very gentle walk yesterday of 30mins as well as doing some dinner preparation for 20mins later on - first almost normal day in 6 months - and I had no crash! (deep fatigue which was fixed by extra dose Biotin & sleep), no flu-like symptoms or diarrhoea or profound weakness - my low folate symptoms; no hair shedding for three days now. And I'm making bile again too!

Am still feeling ok today - taking it easy just in case, but not crashing since activity yesterday, which is unbelievable. I did ask Greg about Biotin before and he said I'd be covered by my b-complex and diet (but those sources had no effect for me), though I'm sure he's correct for most people's needs, and then Freddd said on a thread that he only needed 1000mcg Biotin daily, so really I had completely given up on possibility of Biotin being a limiting factor. Only for your update I'd never have tried it. I'm sure I'll have more insufficiencies to take care of, but at least now I feel I'm on my way after 9 months of being completely stuck. 'Floodgates opening' describes me too.

Thanks re B1. I'll keep an eye on that. Hadn't heard of allithiamine.

I forgot to ask do you take your Biotin several times per day or all at once? I'm doing 10mg in a.m. then 2 doses of 5mg afternoon and evening. I needed 25mg total yesterday to cover the walk.

 

[alicec]

I did ask Greg about Biotin before and he said I'd be covered by my b-complex and diet

I don't think Greg appreciates that many aspects of our metabolism are stuffed.

I've been taking the biotin in 3 doses spread over the day.

I still feel there is something else I'm missing but so far no clues about what.

 

[Athene*]

I agree @alicec . His B12/B2 theory helped me only until the 're-feeding' syndrome kicked in several months ago, though my cousin who has a straightforward B12 deficiency (pernicious anaemia caught early) was completely cured by the B12/B2 alone. She has no odd genes or at least no longterm 'ME/CFS/Fibro', or whatever causes profound debility for many of us here.

Thanks re Biotin dosing.

Re 'something missing'. You mentioned revisiting L Carnitine Fumarate again? It might possibly help. It has helped me. I'm going to try to add some more in a couple of weeks if Biotin continues to go well. (currently on 1/3 of an 855mg Dr's Best LCF - never was able to tolerate more without sudden & severe low folate & low potassium symptoms). There has always been a noticeable, though short-lived, gain in energy when I took the low dose LCF on an empty stomach first thing in morning (my worst/weakest time) - it got me moving and out of bed, but then I spent the rest of the day in a chair. Vitamin D is another element I need to work on and not sure what to do about copper - in a similar position to you right now, though I still need 28mg 5MTHF...

Did you manage to reduce 5MTHF even more than you had already, since high dose Biotin?

 

[alicec]

You mentioned revisiting L Carnitine Fumarate again

I'm hoping the missing thing(s) is as simple as adoB12 and carnitine. I did try revisiting these briefly a little while ago and still seemed very sensitive. However since the biotin I now find I can tolerate and seem to need very high doses of methylB12. I am soaking it up like a sponge.

My idea is to continue with these very high doses for several weeks then revisit ado and carnitine again.

Since taking the high doses of MeB12 I am back to needing high doses of folate again. 25-30 mg seems to be where I always end up.

 

[Athene*]

Interesting. I'm in the same boat - going back up to 30mg folate today as well the usual 2 x 2.5mg B12 injections. I'm hoping the healing will take a year or so, rather than years - don't think I could afford it!

I can use an 8mg sublingual Ado daily now without any problem. I might try to buy some of Greg's Ado again soon. I'm hoping I can increase the LCF - some here have had great success with muscle building and strength from using it, as I 'm sure you've seen.

Good luck with the Ado & carnitine! The Dr's Best LCF worked for me, but so did the Jarrow liquid freebase carnitine, and it's easier to titrate...You may need a good bit more potassium if you try LCF (it sucked all mine up very fast and I'm on 3,600mg daily potassium with only 1/3 LCF tablet. The B12 & 5MTHF alone used about 3000mg potassium daily). Copper 6mg caused me to have a catastrophic potassium deficiency the following morning - thought I was going to have a heart attack until I shovelled the potassium powder (in water) into myself all day. I need to look at copper again.

Can I ask how much B12 and potassium you're using now?

 

[alicec]

Can I ask how much B12 and potassium you're using now?

I've been applying 5 mg Bluebonnet liquid MeB12 topically (mixed with body lotion) 3-4 times daily.

I don't now how much of this is actually absorbed but in the past when I used this product alternatively with the B12 oil they seemed roughly equivalent in effect. So a high percentage.

I have never tried injections; in Australia needs a script, only available from a compounding pharmacist at a terrible price.

When I see my doctor on Thursday for blood test results I may get a script for a small number of injections, just to compare potency with the Bluebonnet topical.

My potassium needs moderated some time ago and even the huge MeB12 doses haven't affected this, though I will certainly be careful when I reintroduce ado and carnitine.

I have been taking about 300 mg 3 x daily (as gluconate).

 

[aquariusgirl]

How can you possibly know how much if everything u need? So confusing

 

[alicec]

How can you possibly know how much if everything u need? So confusing

Based on response. When there is a favourable response to something, keep increasing until more makes no difference.

 

[aquariusgirl]

I wonder if supping gets easier once you have reduced oxolates/metals

 

[aquariusgirl]

30mg if folate is 30x what RichvanK & amy yasko recommend

I dunno ..if it works it works I guess

 

[Athene*]

Thanks @alicec I was thinking instead of one of the injections I might try the Bluebonnet liquid MeB12 5mg. Injections are expensive for me too. I bought some Bluebonnet recently and kept it in a drawer. Can I ask you a couple of questions about it?

- Is it necessary to wrap it in foil do you think and is it necessary to use in a darkened room? I notice the light goes through the syringe part, but the bottle looks quite thick and dark...I'm a bit worried about ruining everything with spoiled Methylb12 - I do vey badly on Hydroxo. Maybe I'm worrying unnecessarily and light doesn't affect the liquid like it does with injection vials (I wrap those in foil before exposing to room light as Freddd suggested)?

-Is coconut or olive oil ok to use with it? If body lotion, does it matter which type, or which ingredients does it need to have?

Thanks.

 

[alicec]

Thanks @alicec I was thinking instead of one of the injections I might try the Bluebonnet liquid MeB12 5mg. Injections are expensive for me too. I bought some Bluebonnet recently and kept it in a drawer. Can I ask you a couple of questions about it?

- Is it necessary to wrap it in foil do you think and is it necessary to use in a darkened room? I notice the light goes through the syringe part, but the bottle looks quite thick and dark...I'm a bit worried about ruining everything with spoiled Methylb12 - I do vey badly on Hydroxo. Maybe I'm worrying unnecessarily and light doesn't affect the liquid like it does with injection vials (I wrap those in foil before exposing to room light as Freddd suggested)?

-Is coconut or olive oil ok to use with it? If body lotion, does it matter which type, or which ingredients does it need to have?

Thanks.

The bottle does seem to be lightproof and I just try to be quick when I open it and apply to the skin. I keep massaging until all the colour has disappeared into the skin. The bottle is opened for a very short time and it takes only a couple of minutes to get it into the skin, so I have just assumed that is ok.

I keep the main bottle in the fridge with just a small amount in an old bottle which I keep in the bathroom for daily use.

Oil or any body lotion you tolerate should be fine. The oil helps with skin penetration.

 

[Athene*]

Thanks for that @alicec Great idea re using the old bottle Yes, they are good bottles, dark and thick.

As you can probably tell, I worry a lot about methyl converting to hydroxo. My methyl amps are amber glass but very thin & transparent. As well as foil, I prepare injections in a darkened room with only enough light from the hallway to see what I'm doing.

I read Fredd saying somewhere it only takes minutes to convert to hydroxo but can't remember how many - not many though, 3 or 4 minutes, I think he said.

By the way, I took a thiamine tablet (basic thiamine) 100mg yesterday and today (silly of me to experiment just when things were going well with Biotin) and had dreadful low potassium (& low folate) symptoms all day today, so that agrees with what Fredd said re keeping B1<40mg, for me, at least.

Roughly how much of a basic thiamine 100mg tablet would = a 50mg allithiamine do you think? (for future reference)...

 

[alicec]

Roughly how much of a basic thiamine 100mg tablet would = a 50mg allithiamine do you think?

I don't really know, but allithiamine is likely to be more potent.

It has it's own unique method of crossing cell membranes and isn't affected by the rate-limiting transport issues which apply to thiamine. Higher intracellular and blood concentrations are achieved.

 

[Athene*]

OK, thanks @alicec

Stuck in the chair again today with very low folate & potassium symptoms (weak and sweating if I move around (improves a bit with potassium), skin rashes coming back, hair coming out a lot - low folate).

Could Biotin be increasing my folate need too much? Or is Biotin like folate, do you think, needing to be increased even more to cover insufficiency?

 

[alicec]

Could Biotin be increasing my folate need too much? Or is Biotin like folate, do you think,needing to be increased even more to cover insufficiency?

I suspect the latter but don't really know.

If you get a minute, please could you look at my OAT results below, taken about 6 months ago, to see if you might notice anything else that's stopping my folate & B12 intake getting to where it needs to be:

There is only so much information we can get from an OAT. They are good for showing frank functional deficiencies, hinting at things like oxidative stress and the oxalate markers are useful, but probably not able to show subtleties.

I think the metabolomics testing that Naviaux and Davis are using will be much more useful for answering those kind of questions. Once the San Francisco testing service is up and running for international patients I intend to order a test. Whether I will understand what it means is another question - but still, I can work on that.

Greg pointed out the above 'high' results are very bad, some of the worst he's seen

Maybe Greg hasn't seen many OATs from people with CFS/ME. I have had succinate values higher than that and citrate just as high. On later OATs they were very low, along with all the other Kreb's markers, which is also a problem.

Basically our Kreb's cycles are stuffed. I look forward to hearing more from Naviaux about his ideas for getting us out of the defective signalling mechanism which is keeping them in that state.

Highish markers can be suggestive too. It's interesting that your MMA is highish despite your use of large amounts of B12. I don't think an OAT is likely to tell you why, just that you need heaps.

The highish glutaric marker suggests marginal B2 status also.

Highish glutathione markers, especially pyroglutamate suggest oxidative stress is an issue.

Interestingly on my most recent OAT the MMA and methylcitrate markers were really low (so supposedly good B12 and biotin status) but currently I am sucking up both like a sponge.

So more is going on than an OAT can reveal apparently.

Sorry I can't be more helpful.

 

[Athene*]

Thanks for looking at it @alicec . Yes, the MMA worried me - it was after a year of daily injections of 1mg methylcobalamin plus, by chance, B2 30mg in a Thorne B-Complex before I knew B2 was important (some r5p is included in it). I had given up the Thorne B-Complex for a few months before the OAT. I followed your advice since then re sublingual r5p so fingers crossed it's improving my B2 status. I'm using a lot more B12 for a few months now, as well. It doesn't seem to be getting to where it's needed though - except for those great few days on high dose Biotin before the usual potassium & folate deficiencies kicked in again! I seem to tolerate roughly 5mg Biotin for now.

I get great days (and a whole year of almost normal activity!) on steroids too, but trying to stay away from them because of raised bp, blood sugar, weight gain & low calcium while taking them.

Why do steroids work so well (apart from sides)? And your LDN? (suppression/modulation of immune response?). I'm lost really. And then I have a slew of apparently nasty SNPs too, like others here...

I'll certainly try for that test from Naviaux & Davis. Please do remind us here if you see it's available.

I suppose I can at least relax about the oxalate issue you had to deal with - one thing I don't seem to have.

Not a clue about high vitamin D without supplementation - I'm guessing it's some kind of autoimmune response. You mentioned elsewhere re 1.25 D going high with ME/CFS. I can't get 1.25 D tested here unless I pay privately (several hundred euro). Fredd mentions D as a vital basic for his protocol so I think I'll try the UVB lamp - zero sun here, can't use supplements.

I use Krill Oil and vitamin E and Astaxanthin as antioxidants, even before the OAT - I feel it's a waste of money much of the time, but could be worse if I stop...

Looks like you're making real progress though. I wonder if your increased copper is helping as well as Biotin? I look forward to your updates. Good luck with the mineral results.

 

[Athene*]

P.S. @alicec your phrase 'you need heaps' re B12 made me remember methyl trap again - an old familiar. So I decided to have a b12 injection within 20 mins of each of my first two large doses of folate, then several sublingual B12s at the same time or shortly after the other smaller folate doses. This has made a huge difference. I had been forgetting the importance of timing and making sure enough b12 was around for folate each time. I seem to need 'heaps of b12' with every folate dose and I seem to keep forgetting that!

 

[Athene*]

How can you possibly know how much if everything u need? So confusing

It's the 'Fredd Protocol' I'm following @aquariusgirl It's high dose MethylB12 & Methylfolate, among other things. It's been good for me, but it's not always easy to implement - lots to remember/keep track of