Transdermal B12 oils

[Johnmac]

Thanks Gary. Always interested to learn more about what's going on in the folate department.

To set a bit of context - and for the benefit of newbies - Dr Greg's rather interesting idea is that:

1. We CFS (etc) people don't have a B12 problem - we have a B12 and B2 problem. B12 doesn't work much without adequate B2, and many people are deficient in B2. (Nearly all dairy-free people like myself, for example.)

2. If you don't have (or supplement) adequate B2 - say about 40 mg/day - you will need tons more folate - probably often megadoses. If you take the B2 with your B12, you don't need a lot of folate (I now take 800 mcg/day - down from 4,800.)

3. If you don't take your B2, you will need methylfolate; but with B2 you can eat ordinary folate & it will cycle to methylfolate okay by itself. (Haven't been brave enough to try this one yet.)

4. Transdermal B12 is way, way better than sublingual, because (i) you get 80% of it, instead of 5%; (ii) it enters the system very slowly, which is perfect, because transcobalamin loading can only happen one way - slowly; (iii) it doesn't rot your teeth or hang around in your mouth for hours; (iv) most of us can take one dose a day instead of three.

I'm only a few days into the above approach, so can't say if it works for me or not. So far the oils have removed maybe 65% of my fatigue. (The fatigue returned when my Freddd Protocol doses got really screwed up from a week of international travel.) And going much lower on the m-folate hasn't yet caused any harm (no apparent PFD symptoms). Potassium demand isn't as great. Euphoria & some sleeplessness (I've had this from B12 before). I'll post more as things develop.

Gary, Greg's theory might suggest that if you were taking enough B2 & B12, you shouldn't have had any problems with folate in the pizza. Which obviously isn't what happened. Unless he means that with B2 we can convert the natural folate, rather than folic acid...

I've actually been experimenting with methyl folate lately. I had been taking 2000mcg or more per day, but I didn't have any clear symptoms that it seemed to help. So I decided to see what my minimum requirement was. I stepped down to 1000mcg, down to 400mcg, and for the last 2+ weeks (until last night) I have had **NO** folate except from food sources -- and I didn't notice any issues. Apparently I'm taking enough B2 so I don't need supplemental folate.

I do think, though, that folic acid can mess that up. I generally try to stay away from folic acid (like wheat products) but I'm not fanatical about it. Last night I took my son out for pizza and ate half a 14" deep-dish pizza, including most of the crust. At about 2am I woke with what seemed to be my classic B12 deficiency symptoms: agitation, muscle twitching, etc. I took more B12 and it didn't help. I took 1000mcg of folate -- first I've had in weeks -- and that helped a lot. But I still had some agitation & twitching. I took about 800mcg of potassium (chloride) and that finally settled me down.

This isn't the first time chowing down on pizza has caused a night like this. I've had the same problem with the same pizza place, and it took folate to snap me out of it that time too. Though last month I had even more pizza one night, with no problem. But that was more of a "natural" pizza place and they may have used non-enriched (no added folic acid) flour?

So anyway. I suspect Greg is right, and I don't normally need the folate I've been taking. But I will keep some on hand for situations like last night.

 

[Johnmac]

I tried quite a few recipes for home-made TD B12, & in the end the hassle & mess wasn't worth it: I switched to Greg's B12 oils.

Also DIY is hard to control the dosages. For some reason my dosages dropped recently (maybe because I switched oils) & my CFS symptoms returned. Then Greg's oils arrived, & symptoms began to retreat again.

I worked out that using his oils costs me 1/3 more per day than the sublingual. But the time & mess factors make up for that, plus the crashes I have when DIY dosing goes wrong cost me plenty. Also, Greg's approach requires way less folate, & no carnitine. So if it works out the extra costs will be made up by that.

Making our own penetration enhancers to mix with B12 = homemade transdermal B12?

To skip all of my boring details, scroll down to the "Possible Recipe" at bottom of this post.

I googled looking for agents the pharmaceutical industry mixes with drugs to allow/increase the deliver of the drugs through the skin. It seems that these agents are called "penetration enhancers" (not emulsifiers, which are the things that make the drug blend evenly into an oil or water for long term storage; see definition of microemulsion below)

I'm interested in trying this on my own. One source, below, listed several easy to find things as well-known penetration enhancers (one of them is lavender oil - which, now that I think of it, does a good job dissolving the finish on wood furniture - so it's stronger than one would think).

Problem is, I'm not the best judge as to the effectiveness, because I'm not consistently responsive to B12. The sublingual enzymatic therapy tablet that I use in my mouth doesn't usually give me any little energy boost, even if I take a few days off of it and then restart. I'm doing it anyway, "just in case" it's doing something.

So if anyone else wants to try making a homemade transdermal mix, it would be great to hear how it goes. here is a link; scroll down to the "abstract" section on it to see the list of penetration enhancers.
http://www.sciencedirect.com/science/article/pii/0378517394903468

They use the word "microemulsion" - the wikipedia definition of microemulsion states "In contrast to ordinary emulsions, microemulsions form upon simple mixing of the components and do not require the high shear conditions generally used in the formation of ordinary emulsions.:", and it states that microemulsions are mixtures of oil, water, and surfectant. Surfectants (sp?) in skin care products are simple soaps or detergents.

The page I linked talks about having some alcohol in the mix, which increased the delivery of the drug into the skin.

Possible Recipe:
methylB12 from inside a capsule of some reliable brand
vodka
water
oil, like some mild cooking oil
lavender oil (don't scoff, see above study reference, and it's strong enough to disolve furniture finish)
a drop or so of liquid soap

I would shake it well each time before using it, and keep it in a dark container.

A lot of work maybe, but if it works, this is better for me than placing periodic orders from some far-off company. I'd like to find a method that doesn't involve holding something in my mouth anymore.

 

[Johnmac]

Penny, I'm just starting the Australian oils now.

How did they work out for you?

I just got my oils this week. I bought two - b12 with the methylcobalamin and adenocobalamin... and have tried two doses so far - thankfully no allergic reaction (since I have so many of those, I was a little nervous).

I also bought b12 ice - it's got methylcobalamin, d3 and curcurmin... I'm thinking 2 x a day with the regular b12 and the ice once a day - tried one of each this morning - again, no allergic reaction.

I haven't quite given up my sublinguals yet - but I was having trouble keeping my b12 dose higher than my folate dose, and was hoping this would help with that. After just three doses spread over two days, I do think I'm noticing the increase in b12.

Another thing I noticed that I don't think I heard anyone post yet. The spot where I had applied the oil seems to get quite warm and stays warm for a long period of time. I'm thinking that I'm going to be strategic and try to see if I can apply future doses on painful joints, sore muscles and let the heat from the dose help with some of my pain.

So, far? I really like it. I was also pretty impressed with the speed that it arrived in since it took only about two weeks to arrive in the US from Australia. I can't hardly get packages from here to Canada in less than a month - and we share a continent.

 

[boohealth]

I just ordered hydroxy and adenysol. I know I can't tolerate methyl. I used to take an oral liquid hydroxy but never noticed anything, but given my snp's I really *should* benefit from it. However, who knows how stable oral formulations are. anyway. I really don't take many supplements--I take beet powder, a liquid ubiquinol that is very expensive, and sometimes an organic cod liver oil.

 

[Johnmac]

I am new to this thread so forgive me for not trawling through it all but is there any mention here or on another thread of magnesium oil, recommended to me this week by my ME specialist doctor? Who also treated me with daily B12 plus magnesium injections on a daily basis for the first year of my illness 8 years ago. We now Skype or email as he has moved to another country.

There's a lot of research on transdermal magnesium (mostly via epsom salts baths) - which works very well in bringing up body levels. I rub the epsom salts on my skin wet when I can't be bothered having a bath.

 

[Johnmac]

You need folate. Greg (and many others) considers folic acid and methyl folate to be essentially identical, and used identically in the body. When he says "you need folic acid" he means you need folate. Not everybody shares his opinion. Lynch and others believe some people have trouble converting folic acid, and you should only supplement with methyl folate.

I'm very lucky. I'm not bothered by a lot of things that trouble people here. I eat wheat, gluten, etc. I try to avoid folic acid just because I think it's a good idea, and I **think** I've seen some relatively mild adverse effects when I eat a lot of bread products containing folic acid. (I pigged out on deep-dish pizza one night and didn't feel well in the night, until I took almost a mg of methyl folate, then *poof* everything was better. Hmm.)

Greg's idea is that you need much less folate when you add B2 to the mix. He says "CFS is not a B12 problem - it's a B12 and B2 problem." Has worked for me so far (one week).

 

[Johnmac]

Good to hear that you're getting good results! I don't have any insights into the best methyl folate technique, but:

When you water a plant, the water soaks into the dirt right away. It takes much longer for the plant to draw it up into its roots and get it to the leaves. I think the same thing happens with the B12 oil. It soaks in between your skin cells quickly, but it takes hours for it to migrate into the bloodstream where your body can use it.

PS: Greg has since told me that you can have a shower 2 minutes after applying the oils. I.e. they sink in pretty quick. He did a huge amount of work over 25 years on penetration, so I gather he knows his stuff.

 

[PennyIA]

Penny, I'm just starting the Australian oils now.

How did they work out for you?

I'm still using them, it's been several months now. I think they work REALLY well. I do seem to have a little bit of an issue remembering them now, but I've been doing so well for so long, that it seems like I'm doing ok missing a few doses now.

Admittedly, B12 oils aren't the only thing I'm doing - I'm doing other supplements and life style (with still quite a bit of pacing) & diet changes. But, I've been in remission now for about 18 months.

I'm back to working full time (again), plus overtime, plus my second job, plus being a single mom/grandmother as well as planning a wedding. I've had a minor re-occurance of issues with dislocating bones - but I'm tempted to think I have mild hypermobility now that most of my crushing fatigue and chronic pain is in remission, now it's the biggest concern I have.

So, I'm thinking I'm at that point of worrying that the mental/social activity is pushing past my limits even though I'm pretty good at managing my physical activity levels. I'm focusing first on what I can manage - and that's working with my manager to get more people hired on to lower the work load and delegating a lot of the wedding prep stuff. If push comes to shove, I can take a break from my second job, but I'm already on break now until Fall after the wedding, so we'll see if I can manage it then.

 

[Johnmac]

That's great news, thanks.

The oils seem to kick things up a level, over the sublingual.

Do you follow a particular protocol? E.g. take B2 (& selenium) as Dr Greg suggests? Or maybe the Freddd Protocol?

 

[PennyIA]

That's great news, thanks.

The oils seem to kick things up a level, over the sublingual.

Do you follow a particular protocol? E.g. take B2 (& selenium) as Dr Greg suggests? Or maybe the Freddd Protocol?

I'm 'sort of' following Fredd Protocol.

I was taking supplements on my own based off of MTHFR.net when I first learned of MTHFR, etc.

Then when it didn't work very well - I looked into Fredd's Protocol and tried to implement it myself (only the improvements were vague and slow - go slow and steady approach). I wasn't very satisfied. I found a doctor who claimed he was current with MTHFR and supplementation and he urged to go faster and higher more quickly. And while I've been a little burned by it? I saw dramatic improvements quickly. And while I still think I'm missing some component of something - taking supplements 5 days out of 7 and 3 weeks out of 4 seems to help clear whatever pathway isn't quite getting the supporting or isn't quite getting the right level of supporting supplements.

When I hit another wall, and that the Doctor didn't seem to know what to do with... I went back and tried addressing the Deadlock quartet.

I've since been a little more open to trying new things (and doing quite well)... in my search for finding supplements that improve my minor symptoms that are left. But, since almost all of this started after taking b6, folic acid and b12 - I've been far more diligent in researching possible issues and conflicts.

 

[Johnmac]

Thanks - yep, it's always very individual. Fred himself is into ramping up fairly smartly, at least vis a vis folate, as I recall. Rockly though it sometimes was, the FP certainly saved my bacon, when CF was swallowing up my life.

After a week, I've found Greg's approach is holding for me: "It's not a B12 problem, it's a B12 and B2 problem". I.e. you don't need much folate (or any carnitine) if you are taking enough B2: the high folate demand is an artifact of taking B12 with an unaddressed B2 deficiency.

But a week's not long...we'll see.

 

[suraj]

Thanks - yep, it's always very individual. Fred himself is into ramping up fairly smartly, at least vis a vis folate, as I recall. Rockly though it sometimes was, the FP certainly saved my bacon, when CF was swallowing up my life.

After a week, I've found Greg's approach is holding for me: "It's not a B12 problem, it's a B12 and B2 problem". I.e. you don't need much folate (or any carnitine) if you are taking enough B2: the high folate demand is an artifact of taking B12 with an unaddressed B2 deficiency.

But a week's not long...we'll see.

Interesting to know no carnitine is required. im still having tough time with carnitine.

planning to order B12 oils.

 

[garyfritz]

Greg's idea is that you need much less folate when you add B2 to the mix. He says "CFS is not a B12 problem - it's a B12 and B2 problem." Has worked for me so far (one week).

I've been taking 20mg of B2 for quite a while. That hasn't helped to lower my voracious demand for B12.

 

[Little Bluestem]

If you don't take your B2, you will need methylfolate; but with B2 you can eat ordinary folate & it will cycle to methylfolate okay by itself. (Haven't been brave enough to try this one yet.)

Christine (Dog Person), who was a big proponent of B2, said not to take folic acid.

I've been taking 20mg of B2 for quite a while. That hasn't helped to lower my voracious demand for B12.

Maybe you need more B2. Or B1 and/or manganese. The possibilities are endless.

 

[winston]

I hair tested low lithium too, & also didn't feel a thing from supplementation. (Hair tests can be skewed by mercury, so I'm not sure how real the 'low' reading was in the first place.)

A friend tested similarly low, & supplemented Li orotate daily for a year. In his next hair test the Li was off-the-charts high. So I only take an Li pill now & again these days.

Hi Johnmac, how are you doing on the B12 oils? I have been using B Group and Aden/Methy B12 for a few months and am better with ups and down. I also take 150 mg B2 vitamins. Their are days I am not well, how long do you think it would take to get to normal. I have CFS with Epstein Barr, Greg said eventually your enzymes will blast the virus, did not say when that will happen. Having a bad day so reaching out to you.

Lena

 

[winston]

I've been taking 20mg of B2 for quite a while. That hasn't helped to lower my voracious demand for B12.

Hi Gary, are you doing better? Has Greg been able to help you? I have been working with Greg and using the oils just wish it would work faster, having ups and downs.

Lena

 

[Johnmac]

Hi Johnmac, how are you doing on the B12 oils? I have been using B Group and Aden/Methy B12 for a few months and am better with ups and down. I also take 150 mg B2 vitamins. Their are days I am not well, how long do you think it would take to get to normal. I have CFS with Epstein Barr, Greg said eventually your enzymes will blast the virus, did not say when that will happen. Having a bad day so reaching out to you.

Lena

I'm doing pretty well Lena. In the first month I had a surge, then a bad crash. I figure the crash was cold turkeying off carnitine, & also I had recently dropped my hydrocortisone, DHEA & T3 (thyroid) down to zero. At the three-week mark I started to build energy again. I couldn't say I had chronic fatigue symptoms now. I no longer sleep in the days, & feel wakeful most of the time. Sleep requirement is down from 10-12 hours to eight. The slow patches are shorter & less severe than before.

I just have a little folate now (oral) & like you I take my B2 very seriously. I also (on Greg's insistence) make sure I'm getting selenium (brazil nuts), C & dash of iodine daily, to make the whole thing work.

I switched to two doses of the oils a day early on, just to ensure things moved at maximum pace.

The other big change is that everything is cheaper & less complicated: & no more sublingual lozenges making holes in my teeth. My B12 dose has gone down from 15mg/day of methyl & 2.5mg of adenosyl to a combined 2.5 mg of both - about one-seventh of the old dose. yet penetration/effect appears to be quite a bit better.

I haven't written this up in depth for PR yet, as I want to wait a bit longer. But seeing as you asked...

If energy is your problem, you could just start googling things that work for that. For example I rediscovered tumeric & cinnamon recently, which give me more energy.

Were/are you a vegetarian? That would make a big difference.

 

[Gretel]

@John Mac
@garyfritz
Or anyone else-- do any of you notice a problem if you had to stop the B12 oils for a short period (like running out and waiting for the next bottle)? I tried my first bottle and was on vacation when I ran out. I think it worked really well for me. All my supplements got a little off schedule during this time. Now I am having some labored breathing and I can't figure out what the issue is. I have been speculating whether it could be running out of the oil and having to switch back to sublingual while I'm waiting for it. I have tried higher doses of folate and potassium, but neither seem to relieve the symptoms. Thanks for any info you can provide!

EDIT: The labored breathing does not seem to impact my ability to do physical activity. It's the breathing at rest that's the issue.

Gretel

 

[Johnmac]

Hi Gretel,

Haven't ever run out, so can't say. I'm on 2 doses a day, & missing one occasionally doesn't do anything.

I've put a family member on the oils too, & she had shortness of breath among other symptoms. Her ferritin was 30, & I concluded she had low iron. So (after the usual battle against the medical profession) I got her an iron infusion. Her brainfog & laboured breathing disappeared in an hour.

I'm by no means saying that's your problem - I just throw it in to look at. Iron deficiency is the most common deficiency in the West, & because Medicine's 'normal ranges' are wrong, many people don't pick it up.

 

[garyfritz]

@Gretel, I've run out a few times, and I rapidly became so miserable that I'm very careful not to run out again! But I didn't have any trouble when I went back on the oil.

Hi Gary, are you doing better? Has Greg been able to help you?

Greg's oil product has helped me immensely. But so far none of his nutritional advice has panned out. I think he knows his stuff very well, but I think I'm an odd case. He can't understand why I need so much b12.