B-12 - The Hidden Story

[Sasha]

I'm starting up the protocol again, although I'm going to keep to 1mg ab12 and 1mg mb12 for a while to try to avoid inducing a Mg and/or K deficiency, which is what I think may have happened last time. I've already started up the basics again (Vits A, B complex, C, D, etc. etc.), the folate and the b12s. So far, so good.

Again, I've had increased stamina on introducing the b12s and what I assume are "good sign" start-up symptoms of a fuzzy feeling in my face and upper lip and in the base of my tailbone. I'm assuming that as I continue and my body fills up a bit with b12, these symptoms will stop.

If I then move on again to the stage of adding in the possible "critical show-stoppers" such as L-carnitine, ALA and so on, and one or more of them is necessary for the process to continue, will I get the same start-up symptoms? I'm wondering how to tell a good sign that tells me to continue from a bad sign that is telling me to stop the new supplement.

 

[richvank]

Hi, Sasha.

That's the million-dollar question. I don't have a good answer to it, unfortunately. You might want to be cautious about taking ALA if it is probable that you have a high body burden of mercury, because ALA can move it around, and possibly move some into the brain. Andy Cutler has developed a protocol using DMSA and frequent dosing of ALA to prevent this and move mercury out.

I hope it goes well for you this time around!

Rich

 

[Sasha]

Thanks, Rich - I have my fingers crossed for this time!

How would I know if I had a high mercury burden? I don't have any mercury fillings (maybe had one or two as a child). I'm not aware of any unusual mercury exposure. Is it mostly from fillings that people get the problem?

I'm actually wondering whether it would be better to continue just with the basic vits and minerals plus b12 and folate for a month or so and see if I improve without adding any cofactors in. In the trial that you did with Dr Nathan, people seemed to be getting signs of improvement by 3 months but maybe 1 month is too soon to tell. I'm also wondering whether to maybe only add the cofactors that are also in your protocol, i.e., L-carnitine and TMG (I'm not sure if those just happen to be in the Neuro Health Formula or whether they are critical for the SMP). Any views?

I'm very confused about how to tell the difference between start-up symptoms, a bad reaction telling me to stop something, induced deficiency symptoms and symptoms of the whole process having stopped because a new cofactor is needed! I'm wondering if I can simplify the process just by not adding in the additional cofactors and accepting that my progress may be slower than it might otherwise have been, but progress all the same.

 

[SickOfSickness]

I had a doc who was surprised that I am sometimes low on B12, sometimes high. I don't remember being low, but I guess I was, he claimed he saw it. I know I was slightly high once, and definitely high another time. At the time I wasn't taking any vitamins. I think I naturally chose foods for myself that were high in B12. I don't have the energy to learn about the B vitamins much, but I am curious if the foods could be the whole reason for those results I had. I think it also has to do with being deficient in other things, and I am curious what I should try supplementing.

 

[biophile]

B12 drops and mouth issues

I don't remember which thread I first read about it, but some people were reporting gum/mouth/tongue issues when taking B12 drops or lozenges under the tongue. I haven't tried lozenges yet, but I want to share my experience with 1mg methyl-B12 drops from HolisticHeal.com (http://www.holisticheal.com/methyl-12-mega-drops.html). The first time I tried it, I was mixing it in a very small amount of water. I soon developed an ulcer on the front bottom gum near the teeth. Although I do get mouth ulcers and this was an unusual place for one, I dismissed it as a coincidence. For a while I have been putting the methyl-B12 drops into a much larger drink or a smoothie without problems. However I recently decided to try putting them under the tongue at full strength. Again, I soon developed another ulcer or equivalent lesion in the location where the drops land under the tongue, which is also unusual as most of my regular mouth ulcers are elsewhere like the inner cheek or places where cheek meets gum. Therefore I conclude this is not a coincidence. I guess it is the citric acid?

 

[Sasha]

Hi biophile - I take the sublingual tabs and a while back, someone posted that the soreness we get from this is due to the citric acid so we were emailing the manufacturer to request them to leave it out, and they were looking into this. Perhaps it is the same with the drops.

If you are knocking the drops back in a drink, I think the b12 will go straight to your stomach and you will be absorbing hardly any. Freddd has talked a lot about the importance of holding the sublingual tabs under the tongue as long as possible so it goes steadily into the bloodstream through the skin contact. If you just swallow the drops, I think you're basically just destroying the b12.

I don't know what to suggest to avoid the ulcers, though! Anybody?

 

[richvank]

I don't remember which thread I first read about it, but some people were reporting gum/mouth/tongue issues when taking B12 drops or lozenges under the tongue. I haven't tried lozenges yet, but I want to share my experience with 1mg methyl-B12 drops from HolisticHeal.com (http://www.holisticheal.com/methyl-12-mega-drops.html). The first time I tried it, I was mixing it in a very small amount of water. I soon developed an ulcer on the front bottom gum near the teeth. Although I do get mouth ulcers and this was an unusual place for one, I dismissed it as a coincidence. For a while I have been putting the methyl-B12 drops into a much larger drink or a smoothie without problems. However I recently decided to try putting them under the tongue at full strength. Again, I soon developed another ulcer or equivalent lesion in the location where the drops land under the tongue, which is also unusual as most of my regular mouth ulcers are elsewhere like the inner cheek or places where cheek meets gum. Therefore I conclude this is not a coincidence. I guess it is the citric acid?

Hi, biophile.

I think the sublingual B12 supplements have citric acid added to keep the B12 from ionizing, so that it will more readily be absorbed by the mucosal tissue. The citric acid may be what is causing the problems for you.

You may need to go to injectable B12.

You might also consider the method advocated by the late Dr. David Gregg (www.krysalis.org). He added B12 to DMSO (dimethylsulfoxide, available in some health food stores) and applied it to his skin. I think he found that the skin on the leg was least sensitive to the itching that DMSO can cause. Using one of the diluted DMSO solutions helps to counter the itching problem. The other issue with DMSO is that it causes the breath and perspiration to have a garlic-type odor. It's important to have clean skin when doing this, because DMSO can carry a lot of things through the skin.

I think there is also a liposomal B12 on the market, too. At least there was in the past. That would be another way to get quite a lot into the body.

Best regards,

Rich

 

[*GG*]

My Dr prescribed this for me, it cost me $36.30/bottle of 120 capsules, it has Vitamin B6 (as pyridoxine HCL USP), 50mg, Folic Acid-5mg, and Viamin B12 (as Methylcobalamin), 1mg. He has me taking 2/day so a bottle will last 2 months.

Does anyone know where to find a substitute for this product?:

http://orthomolecularproducts.com/ProductDetails.aspx?id=5d7a2537-f40a-44b1-938f-0121ff616a81

CardioB by Ortho Molecular Products

GG

PS Thank you in advance for any input.

 

[Valentijn]

Does anyone know where to find a substitute for this product?:

http://www.solgar.com/SolgarProducts/Homocysteine-Modulators-Vegetable-Capsules.htm looks somewhat similar. I'm not sure the high dose of inactive folic acid in the Ortho Molecular item is a great thing to be taking, since it can compete with the natural forms of folate.

Alternatively, you could get the components seperately: Solgar has B6 going up to 250mg, sublingual methylcobalamin as 1 or 5mg, and active folate (as Metafolin) at 400 or 800 mcg. It looks like Hampton Natural Foods (http://www.hamptonnaturalfoods.com/) has a pretty impressive selection of vitamins.

 

[RustyJ]

Hi Fredd or anyone else who can help. I am following your protocol, having titrated up to 10mg of MB12, yet to take up the AdB12, yet to take up some of the cofactors). I have lost weight over the past year and was thin before that. My weight had stabilized though. Eight weeks into the program I have started to lose weight again, which cannot be explained by water loss. I am eating a lot. I do have excessive urination etc and retention which adds up to 2kg. But I still cannot explain weight loss in periods when I am not urinating.

I am slightly improved on the program, so am feeling hopeful. Is weight loss part of the start up issues with taking B12? If so, when will I get beefy (adb12?)? I am getting a little worried. I apologise if this subject has been raised before. Thread is too long go through.

Signed (fat wannabe).

 

[*GG*]

Thanks, I will look into it. My Dr did blood tests back in late July, so I fgure he know's what he is doing. He has helped me a lot in the last 2 plus years!

GG

 

[jeffrez]

I'm now taking 5mg jarrow mb12, and 1 B-Right per day. 5-MTHF makes me horribly depressed. I might be getting some small depression from the folate in the B-right, I just don't seem to do well with folate anymore. A couple years ago it was giving me the opposite effect, more of an anti-depressive, anti-OCD effect, so I don't know what happened to change it.

On the 5mg mb12, my low b12 status has risen to >1200. Increasing mb12 much past 5mg gave me heart palpitations.

So it looks like I'm at the limits of what I can do with this protocol. Unfortunately the results for me weren't all that spectacular, or even really very noticeable, apart from some side effects and very minor brain energy increases at the beginning. I hope others will have more success.

 

[therron]

I'm now taking 5mg jarrow mb12, and 1 B-Right per day. 5-MTHF makes me horribly depressed. I might be getting some small depression from the folate in the B-right, I just don't seem to do well with folate anymore. A couple years ago it was giving me the opposite effect, more of an anti-depressive, anti-OCD effect, so I don't know what happened to change it.

On the 5mg mb12, my low b12 status has risen to >1200. Increasing mb12 much past 5mg gave me heart palpitations.

So it looks like I'm at the limits of what I can do with this protocol. Unfortunately the results for me weren't all that spectacular, or even really very noticeable, apart from some side effects and very minor brain energy increases at the beginning. I hope others will have more success.

Hi Mr Kite,
Like you, I hit my limit with the protocol. I got up to 400 mcg 5-MTHF, and 500 mcg mb12, and I feel that things have gotten worse. Once I passed the excitotoxicity stage, I thought I had the benefit of a more balanced mood, but I now find that I just feel depressed (not a typical thing for me), I have less energy than ever before, and now I am under reacting to supplements whereas before I was over reacting (can't get to sleep at all with occasional Ambien now, and pulse doses of supplements show no changes for me). I have throughout the protocol tried to figure out the missing critical cofactor, but everything makes me feel worse, with gastro symptoms, fatigue, and brain fog being the worst symptoms I deal with. I feel that my liver is overtaxed, and I just want to flush everything out of my system, then go back to feeling fatigued without taking a dozen supplements a day. I sure would like to hear from someone who hit this point and got past it.

 

[aprilk1869]

Increasing mb12 much past 5mg gave me heart palpitations.

How much potassium are you taking, this is a classic hypokalemia symptom.

 

[Sasha]

On hypokalemia, I'm not taking potassium tablets this time round - I found they made my stomach intolerably acidic at the sort of dose I was having to take on the b12 protocol (about 1200mg/day). Instead, I'm eating two bananas (approx. 420mg potassium each) and two 250ml glasses of coconut juice (560mg potassium each) for a total additional potassium in my diet of about 2,000mg. These things don't hurt my stomach and they taste nice!

I did an analysis of my diet using USDA tables and found that, like the average person, my diet provided me with about half the RDA of potassium (the RDA is 4,700mg). Now I'm up to the RDA.

The coconut water I'm using is Vitacoco (nothing added). I'm in the UK and I order it from Tesco, who deliver it to my home (it's heavy!). It's also pretty expensive, at 3.49/litre, but at least bananas are cheap!

Presumably there's no reason not to get potassium from the diet, rather than via dietary supplements?

 

[therron]

Low potassium is easily avoided. Some take pills, but a low-salt or no-salt salt substitute from the grocery store works well for me. There is virtually no risk of overdosing with a normal usage of potassium pills or salt substitute, so the risk of low potassium is easily avoided without further risks.

I don't know about Mr. Kite, but I do know that I did very poorly on potassium. I tried taking it for a week and felt like death. I quit the potassium and started taking sodium instead. I felt much better. I have seen others on this site with the same problem, so be careful about saying that there is virtually no risk with using potassium supplements. Some of us are outliers, even in this virtual world of alternative therapies.

 

[L'engle]

My observations about potassium:

You can get potassium in powdered form and use it in a foot bath. I do this myself when i get tired of swallowing them and it seems to absorb just as well. The potassium is pretty important. For me the symptoms of low potassium were in a generic way similar to ME symptoms, but when I got used to noting the subtler differences it became easier to tell whether potassium is needed. I can see why you would be cautious, given esophagus issues, since there were times when I was away from the house and needed to take potassium quickly to alleviate symptoms.

So how did they differ from ME symptoms...
1) Leg cramps. I get leg cramps from low potassium that are different and sharper than the usual ME muscle pains. They go away in about 30-60 minutes from taking potassium.
2) Weakness and need to sleep that is different in nature from ME weakness and need to sleep. I would feel the sleeping element of the fatigue, without the normal autonomic headaches and pains associated for me with PEM or OI, and they would happen regardless of activity. This is pretty important, since I actually had to be MORE careful about leaving the house during this phase than I had been in course of my ME illness. I would have phases of higher functioning in the day than was usual, but, when the weakness and low potassium symptoms kicked in, the would happen faster than my normal ME symptoms. SO, usually when I am out somewhere, I get a long warning period between feeling alright and feeling near to physical collapse. The head pain and other OI symptoms would come in far in advance of collapse. With the low potassium, there was a very short window between feeling 'OK' and feeling close to collapse. So I really had to be careful with going out and always have potassium with me.

That being said, the low potassium has gotten much easier to control after a few months on the protocol. I need a smaller amount and never have instances of feeling close to collapse from lack of potassium. I've improved to a level on this protocol (Freddd's) that I would say has made it worthwhile for me.

 

[drex13]

Thanks valentinjn, u have done your best to clarify. i appreciate that. On consideration,i think neither regime is probably for me, for various factors. But I am glad i am asking the questions; and u have given an unbiassed and clear an overall picture as is possible without being Fredd, RichVank or Cort So thanks.I think these questions need asking every so often.
in reference to Therron's point re us being outliers, we VERY much ARE; at the same time, no-conflicts-of-interests declared, i think it is brave when people put their necks out and advocate therapies, especially with trials and evidence, not just one individual's experience. We all, as informed individuals, have to make very difficult risk-assessment decisions. So thanks to you both. Steve ("Stevenski")
P.S. oral caplet/tablet/capsule potassium supplements are documented as hard on the oesaphagus; if u have (like me) oesaphageal dysmotility and /or acid reflux, in fact probably ANY gullet problem, i think this should be flagged up when Cort and others recommend potassium supplementation. I now remember why i ruled it out years ago.I shall stick to my existent supplements! But thanks for explication.

I have acid reflux and take potassium gluconate as part of my methylation protocol and have noticed no adverse affects with the potassium and acid reflux. I found that I needed the extra potassium when I started the Hb12 and methylfolate, and doubt that I would have known that potassium was what I needed if not for the information provided by Freddd.

 

[curecfs]

Not getting any further improvement after 4 months

I've been on the protocol since early July. I've gotten maybe 20% improvement and seem to have reached a plateau. If anyone has any suggestions regarding my regimen, it would be greatly appreciated. I have been taking the following:

Sublinguals (take as soon as I get up, let dissolve completely under tongue, about 1 hr):

• Jarrow Methyl B-12 5000mcg, 1 tablet
• Source Naturals Dibencozide (B-12) 8.6 mg, 1 tablet
• Source Naturals Coenzymated B-6 (P5P), 17 mg, 1 tablet

Afternoon Supplements:

• Solgar Folate 800mcg, 1 tablet
• Pure Encapsulations, B-Complex Plus, 1 capsule
• NSI D-Ribose, (2 capsules, total 1.5g)
• Vitacost SAM-E 400mg, 1 tablet
• Vitacost Alpha Lipoic Acid 600mg, 1 tablet
• Enzymatic Therapy ADRENergize, 1 capsule
• Hannaford Zinc, 50 mg, 1 tablet
• NSI AdvanC, 1000mg, 1 capsule
• NSI Fish Oil, (1 softgel, 1 gram)
• NSI Vit D3, 4000IU, 1 capsule
• Natural Living Iodine Plus-2, 1 tablet
• NSI Selenium, 200mcg, 1 capsule
• NSI L-Theanine, 100mg, 1 capsule
• Jarrow IronSorb, 18mg, 1 capsule
• Vitacost Probiotic 15-35, 1 capsule
• Finest Natural Potassium Gluconate 595mg, 1 tablet

Evening Supplements:

• NSI L-Carnitine Fumarate, 500mg, 1 capsule
• Source Naturals TMG, 750mg, 1 tablet
• GTF Chromium, 200mcg, 1 capsule
• Nature's Way Lecithin 1200mg, 1 softgel
• NSI Fish Oil, (1 softgel, 1 gram)
• Vitacost Magnesium Plus, 300mg, 1 capsule
• NSI Gamma E Complex, 700mg, 1 capsule
• Himalaya Turmeric, 222mg, 1 capsule
• Citracal Calcium Citrate with Vitamin D Plus Magnesium, 1 tablet [has half of the following: Vitamin D (as cholecalciferol) 250IU, Calcium (elemental) 500mg, Magnesium 80mg, Zinc 7.5 mg, Copper 1 mg, Manganese 1 mg]
• Finest Natural Potassium Gluconate 595mg, 1 tablet

 

[Adster]

I wonder if a couple of those would be better taken in the morning in terms of sleep. Perhaps the SAM-E, TMG, ribose and Carnitine, for example. How do you go with sleep?