AdB12 weird response?

[surfbaby]

Just got back from camp! The sound of loons is the only thing that I welcome in the middle of the night, I will wake up for that any day. Saw a couple of otters too and that is not a common sighting for me. So nice.

That is my way of saying that I just got your message today. In fact, this hour....
Sorry to hear about your long-standing battle with ME/CFS. It really moves me to hear stories like yours.

@stridor
I so much appreciated your informative response, but wasn't able to write back sooner because of some setbacks esp to brain and eyes, making it difficult to see and look at computer screen. The eye problem holds me back on the forum the most.

To complicate things further, I had to get a new refrig (being delivered on Thurs), and the smells of the last one I got 7 yrs ago made me sick for quite awhile, so don't know what to expect. Exhausted from cleaning and moving things to accommodate new bigger one. Not used to this level of exertion, but thinking that the protocol is prob the only reason I can do any of this at all.

Forgot to do multi-quote, do will write a second post with the only questions I can muster up for today!

 

[surfbaby]

Congrats on getting 10 mg per ml!!! You are in Freddd's league. You likely know that he takes, or was taking, 30 mg mB12 by injection daily. I used this to have the confidence to find the dosage that I needed. No matter how silly it all seems (I still have a hard time believing I need 2 injections a day and will try to cut back from time-to-time. It is my wife who notices the changes first.

@stridor
I am actually wondering if I should get the 1mg per ml since my starting doses will probably be pretty low. I had bad reactions to the 25mg per ml several years ago, but I wasn't doing methylfolate and FP then. I think the concentration makes a difference for some who are really sensitive like me, but on the other hand you can use a smaller syringe and it's easier and maybe less painful to inject a smaller amount.

My main questions are about 1) how to convert what I'm taking sublingually to injection, and 2) how many times a day I should inject. Even though I am taking more than you did before you started injections (I'm currently at 10mg mb12/day), I am very sensitive to fluctuations in dose. I also need to take mb12 soon after I take methylfolate (MF) or I have symptoms from the MF. Currently I take both MF and mb12 3x/day. I honestly don't think I could do 3 injections a day! Even 2 seems rough!

whodathunkit said she takes her MF throughout the day (I forget how many times), but only injects mb12 once a day. I don't know if that would work for me because of the symptoms I get when I don't take MF and mb12 together. Maybe I could start by substituting just 1 of my 3 daily doses with the injection, and continue taking the Enzys the other 2 times. What do you think, or do you have any other ideas?

As for converting the doses, @Freddd says at most a good converter might get 20% of a sublingual. So I figured 20% of my regular mb12 dose might be a good place to start, or do you think less in my case, since I am both MTR and MTRR (I'm not MTHFR though). I figure if I'm MTR and MTRR, I'm probably not absorbing the full 20% of my sublinguals, so maybe a 20% injection would be too strong? Do you know anyone else on injections who would be good to contact?

Until I can figure out how to safely do injections, I definitely have to find an alternative to the Enzy's due to dental worries and expense. So far I haven't found a 5mg mb12 I can tolerate yet, but trying Solgar next. There also is no way to know how much of a new sublingual I am absorbing if I switch brands. I know @Freddd did analyze several brands, but that was years ago, and even he didn't remember all the brands tested. At least we know Enzys are the best for absorption. Do you have any ideas for good 5mg mb12 brands? I can't do citric acid and used to be sensitive to xylitol. Got really sick from Source Naturals 5mg mb12 (but do great with SN adenoB12), and Freddd said it had the worst absorption of mb12 brands tested.

I took both B12's together and sometimes even had both in my mouth at the same time. I think that Freddd came out with the idea to keep them separate later on. I doubt that it is a big problem and even if it was it would just mean that you would be taking a bit more to compensate. Just get it in and let the body figure things out from there

I was inspired by your nibbling Ad12 throughout the day, but it backfired on me! I don't know why, but I can only tolerate AD at night, when I'm getting tired. I had a terrible reaction trying to take it in the day, as soon as I put it in my mouth! But taking around 3mg of Source Naturals AD after dinner, no problem! I guess I will continue taking it nightly.

I know there are no ratios, but I'm sure I saw a post by @Freddd suggesting at least 1/4 or 1/5 to minimum of 1/10 of Ad12 to mb12, though I can't find it again. Did you ever hear that? I used to be on a different forum with Freddd 10 years ago, and I remember something about 1/5 then too.

Thanks so much for your kindness and help! If it takes me a little while to reply to your response, I'm probably just recovering from the new refrigerator, but it shouldn't take as long as this last setback. Hope to hear from you soon!

 

[stridor]

Hi @surfbaby
As I said, I don't come to this site anymore so I haven't read your other posts. What type of eye problems are you having? I used to have problems focusing on the computer screen in the mornings. It would take a couple of hours for my eyes to learn how to work again. This is a problem with "accommodation" and it is not rare with those with mercury toxicity.

I hope that the new fridge makes life a bit easier for you.

I do not share Freddd's optimism when it comes to the amount absorbed sublingually. There are studies that suggest the amount may be significantly less. In the end, it doesn't matter as we just take the amount of B12 needed to feel better in the end. It is not about numbers - it is about resolution of symptoms.

You will not need 20% of what you are taking sublingual. In addition to the 2 needles I was also taking 30 mg of mB12 and 8.6 mg adeno per day. But I was doing this to try to promote optimal healing and not because I thought that I needed it metabolically.

Once it is established that a person has been starved for B12 and it having symptoms that suggest the neurons are not happy about it, then flooding the body for a period of time (I did it for over a year) is thought to preserve neuron viability.

If you are able to keep the injections to less than or equal to 1 ml then you can use an insulin syringe. Some of these have 30 gauge needles on them and sometimes I don't even feel them. Regardless B12 is doesn't sting much. The other B vitamins that I take in the morning on the other hand do. No biggie though.

These needles are short and I have to compress by tummy fat and inject perpendicular to get it as deep into the subcutaneous as I can. My recovery suggests that I am doing fine. Deep subQ is absorbed slower and you might be able to get by with daily. You can see from my signature that I have some MTR and MTRR stuff going on too and I need 2. Three did not improve things further.

MTR in combination with MTRR will make someone a bit of a B12 sink. When I was taking one needle a day, I could still get into trouble if I took too much mfolate. A couple of times I needed some niacin to zero things again. The symptoms of this were brain-fog and cognitive processing problems.

The niacin taken sublingually worked very well. Freddd told me that this was not a methyl block problem because that does not happen when someone has B12 in place. A light went on and I increased the B12 and never had a problem with mfolate again.

As I said, my gut is damaged and I do not absorb folate well and therefore take it sublingual. I only do this once a day now for the most part. Back in 2013, I was doing it many times a day. It would lower brain-fog and improve concentration. It is still my #1 go-to solution for brain-fog. It is just that I don't get fog as often.

My sense of things are that most people are taking B12 s.l. on this site. If a survey hasn't been done yet it could be a project for someone. How many are taking B12 by injection, who takes it orally or sublingual and then how often daily. The moderators will assist with setting up a survey if one hasn't been done already.

I like your idea of introducing the injections on a gradual basis. It seems prudent for someone as sensitive as you seem to be. It won't take you long to notice if you can tolerate folate better with the needle and worse with s.l..

BTW, you likely know better than I but do you need much mfolate? It would seem to me that if you are not MTHFR that your problems are not getting methyl groups into the factory - your problem is that you can't seem to process them once they are there. While finding the right dose of B12 is your focus at this time, you could also consider cutting back on the folate perhaps. Just an idea.

You may have seen this already: http://www.mthfrsupport.com.au/mtr-mtrr/
and this: http://suzycohen.com/articles/mtrr/

These are both consumer sites and you need to visit sites like this with your critical thinking skills honed. But if you are like me then these are pretty much all that you can understand. When I go to Google Scholar, what I read is generally over my head.

Your best advice may come from others who more closely share your genetic signature.

I used AOR methylcobalamin 15 mg and they make a 5 mg as well. I don't know whether it is a good one or not. I always had the 2 mg by needle as well and would not have noticed perhaps if I was wasting my money.
www.aor.ca/en/product/methylcobalamin-ultra

A high dose like this might subject your teeth to less fillers and citric acid in a day.

Again, I may not know what I am talking about but I wouldn't worry so much about adenoB12 until you have made some progress getting closer to optimal dosing with mB12. I had no discernible effect from adeno within 2 weeks of starting it. According to Freddd this is because I "filled the bucket". I had a deficit that I fixed and then all I needed to do was take enough to keep it that way.

Too bad. The first dose made a big and positive difference.

I don't know anything about ratios. I have increased the adeno to one tab a week again = 8.6 mg. Who knows how much I absorb? I take it in the evening so it is close to the time I brush my teeth. I don't know if that helps preserve tooth enamel or not but it is worth a shot.

Hope you recover from your recent exertions, brad

 

[surfbaby]

Hi @surfbaby
As I said, I don't come to this site anymore so I haven't read your other posts. What type of eye problems are you having? I used to have problems focusing on the computer screen in the mornings. It would take a couple of hours for my eyes to learn how to work again. This is a problem with "accommodation" and it is not rare with those with mercury toxicity.

I was going to wait until after the big refrig day tomorrow to write back, but your reply was so informative, and also made me realize there is so much I don't understand. Of course I have more questions now, and I did check out your links. I can't tell you how much it means to me that you are helping me.

I didn't realize you don't come to this site anymore. I hope it isn't a problem to keep posting you here, because you definitely know things that I need to know, and your posts and style of writing are concise and easy to understand as well as friendly. What site are you on now?

My eye problems started with the development of an autoimmune disease called uveitis or iritis in my right eye in the early 2000's. Btw, there is evidence that it can be triggered by B-12 deficiency. I didn't know it, but I had started developing a severe B-12 deficiency from a very high folic acid protocol connected with allergy shots I was taking (then from England called EPD, enzyme potentiated desensitization; now made in US, called LDA, low dose antigens) that threw the balance of folic acid and B-12 way out of whack. They stopped doing that protocol by the mid-2000's because a lot of people had problem.

Anyway, I didn't know I had uveitis for awhile, so it already started causing damage. Then it didn't get treated properly and became advanced, causing major damage to my right cornea and pupil, This disease will also trigger even a very mild cataract to start progressing very rapidly, causing blindness unless you have cataract surgery, which I couldn't do until the disease was calmed down with steroid eyedrops (horrible!) and treatment with anti-virals because I also had developed herpes in that eye. The environmental allergist I had been working with for years warned me that taking anti-virals was risky for someone with my sensitivities, because it could really mess with the immune system, but at that point I was trying to save my eye.

I eventually was able to have right eye cataract surgery, but it went wrong in many ways, starting with that we chose the wrong cataract implant for someone with uveitis, The one we chose was the top of the line that had moving parts that made it able to adjust your near and far vision, but the supposed best surgeon in the state didn't realize it was more irritating to the eye and not recommended for uveitis! Also the repair to my pupil went wrong in that instead of just removing the adhesion that had my pupil stuck and closed down to a eyehole (the disease causes a stickiness that makes the pupil get stuck), when the doctor cut the adhesions, my pupil blew completely wide open to a permanently dilated condition. That is why I am so ridiculously sensitive to light, and any LED/LCD screen is the worst. If I make it too dark then I can't see. A patch doesn't work either, because light that goes in one eye is also seen by the other eye. Also he couldn't remove the scarring on my cornea, which greatly blocks my vision. Bottom line, I am still legally blind in that eye, but I can see enough for it to be irritating and harder for my eyes to focus together.

Sorry this story got much longer than I intended, and I have to stop soon. Unfortunately I got the disease in my left eye too around 5 years ago, and a cataract started rapidly progressing. Fortunately the new crop of doctors out of medical school were much better trained in dealing with uveitis, so after almost a year of being almost blind in that eye too, I was finally able to get that cataract repaired. For now I am on a very low dose of only 1 drop of steroid in each eye daily, but hopefully can get weaned off that soon, especially after just reading from one if your links that it blocks B-12. I also take 1 puff of steroid inhaler daily for asthma, but also hope to wean off that too.

A few questions for now, I have so many more!

1. I didn't realize you were taking 30mg of mb in addition to the 2mgs injected. That's a lot more than I am taking - 10.5 mg/day divided in 3 doses SL). If you don't think I will even need 20%, I might need to rethink doing the 10mg per ml and get the 1mg per ml like you take. It might be difficult to accurately measure a really small dose of 10mg per ml, although it is doable with the smaller insulin syringes. Also more importantly, I wonder if a smaller more concentrated dose will release faster than a bigger less concentrated dose, or vice versa.. Do you have any thoughts on that? I thought I once heard that the more concentrated serum might release more slowly, but the pharmacy didn't know.

By the way you said Freddd's 20% was optimistic compared to research. What have you heard is the actual range of percentage of SL absorbed?

2. How much sublingual MF were you taking with the above MB dose, and how did you divide the MF and MB doses (both SL and injections) throughout the day? ahmo said she could take less MF with sublingual, was that true for you and approx how would you estimate the difference? Do you think I could continue to take Solgar MF instead of an actual sublingual brand, but let it dissolve under my tongue instead or does it have to be done slowly between the lip and gum too? I tried under the tongue once by accident, and it was way too strong, so obviously I absorbed more & faster that way. I have been following Freddd's rec to take the MB 30-60 min after the MF is in place for optimum effect. Do you do that, or just take them at the same time? Sometimes I've waited longer than 60 min by accident and I think that's bad.

3. I actually have sometimes thought I should be taking more methylfolate because of some of my skin symptoms, but I definitely get histamine reaction when my ratio of MF is too high compared to MB. I have been using ahmo's method of taking a little extra MB when I have a histamine reaction, and that has worked in the past. However when I get up to higher doses and/or injections I think I should have niacin on hand, or I could run into trouble. Is there one you recommend, and doesn't it have to be nicotinamide?

I also realized from one of your links that chocolate causes histamine, which could be why I sometimes get Mast cells (a blood blister on my tongue) when I eat too much.
I have a special organic dark choc snack that I make with coconut oil and coconut butter that I don't think I could give up. It gives me a feeling of energy and well being and makes my fibromyalgia pain subside greatly, as well as allows me to maintain a healthier weight. Prior to that, I was under 90 pounds. I can definitely decrease the amout of choc in it though.

4. I haven't tried the Solgar MB yet, but planning to right after refrig delivery. From what you said, it's probably impossible to know how much MB I am getting. What symptoms should I look for that might indicate I am not getting as much as with the Enzy's? Conversely, what symptoms should I look for to indicate I am getting too much? The Solgar 5mg is 1.5mg more MB than the 3.5mg Enzy I take 3x/day. Do you think I should cut it in half or just take the whole thing, since it's probably not as strong as the Enzy? Also I have a feeling it will dissolve faster than the Enzy.

I really want to work in getting my MB doses higher for optimum healing. I think those LDA shots would really help too, and the new maverick doc from Alaska doing it is supposed to be a genius Dr. Ty Vincent). But if you don't get the codes right on the LDA, it can take months to recover from an overdose, so I think MB and MF and the rest of the DQ are the best bet for now. Anything additional you recommend for now?

Thanks again for sharing your knowledge and experiences!

 

[surfbaby]

As I said, I don't come to this site anymore so I haven't read your other posts. What type of eye problems are you having? I used to have problems focusing on the computer screen in the mornings. It would take a couple of hours for my eyes to learn how to work again. This is a problem with "accommodation" and it is not rare with those with mercury toxicity.

@stridor
Me again. I didn't tag you on my previous long post above, and since you don't come to this site anymore, I was concerned you might not see it, and I had several important questions (and it took me forever to write it!) I didn't mean to get carried away with the eye story. I bet you're sorry you asked now!

Is it important to tag you on all posts?

Also how do you write me back without having to display my post above your reply? I barely know how to do multi-quotes, and I like the way you write your replies without them.

 

[stridor]

@surfbaby
I just start typing into the box at the bottom of the page. If you do this you have to tag the person for sure. When you reply directly to a post I think that the person receives an email.

I don't come to this site anymore because I no longer have CFS....or barely have it. I no longer have orthostatic intolerance, or post-exertion fatigue, brain-fog is very low or gone most of the time. The only things that I have are a bit of fog sometimes that comes and goes....mostly goes....and I don't think that my energy level is what it should be for a guy my age.

That is hard to say. I used to have Bipolar Disorder as well (went away with heavy metal detox and related supports) and so I never had "normal" energy levels at any time in my life.

I read your piece on your eyes. All the way through I am thinking, "hope it didn't go to the other eye, hope it didn't go to the other eye...." Sounds like it took a while and didn't hit full force and thank goodness for that. I am acquainted with iritis. Are you a candidate for a cornea transplant someday? The steroid gtts sting a bit

There have been studies that say sublingual absorption is no different than just swallowing it. I suspect that the answer lies right in the middle. There may be a few at 20% and a few at "same as oral" and the rest of us would Bell-curve between the 2. (On the other hand, I just made that up).

I know that my digestive system is shot and always assumed that I would be lucky to get 10% and I based my arithmetic on that number. Obviously, I didn't have a clue then and I don't now. I do not know how well I absorb the adenoB12 that I still take sublingual.

When I was the sickest, I pretty much always had a piece of B12 on the go. I would nibble off pieces of the mB12 or adenoB12 and stick them high in the buccal pouch.

Early in this process I came to the conclusion that I couldn't afford mfolate. I was up to 9 capsules without a big return. Going sublingual was very natural....I don't remember even thinking about it... the effect was pretty immediate an it would drop my fog by up to 50%. I would be sitting in a meeting and having a hard time following things and within a few minutes of putting mfolate under the tongue I would be back in the game.

The first years I would take it upon arising and the last thing before bed and then several times throughout the day. I never measured or kept track but it was up to about 4 mg for a while - I am C699T++. A bit different than you.

I now take about 1 mg a day and as necessary for fog - which isn't too often - maybe twice a week or something like that. I have posted before that there are people on this site who take 15+ mg a day of mfolate and I suspect that they have absorption issues and would benefit from going s.l.

There are other things my gut does not absorb well either. This is nothing new for me.

I have never been concerned about timing for B12 and folate. Folate is absorbed fastest under the tongue, second fastest in the lower buccal pouch and even slower when pushed to the back beside the rear molar. The slowest when pushed into the upper buccal pouch. That is just conjecture and is based on my perceptions. We are all different - produce different amounts of saliva and absorb differently too.

I don't know if nicotinamide would work or not....I used plain old niacin. Brand doesn't matter but it has to come in a capsule so you can pour it under the tongue.

Memory is being uncooperative. Do you know about my Mast Cell and histamine history? Likely I directed you to the thread. Coconut kefir has been effective in dealing with the hives. I only get 0-3 a week as opposed to 3 to four patches of hives sized from a softball to half my torso, every day.

Coconut kefir is a large part of my diet and I take in more than 600% of the saturated fat recommended. But as you know, not all saturated fat is created equal. My last cholesterol numbers were awesome. I used to have high cholesterol. Coconut smoothies make up around 1600 cal/day.

I have more energy, less hives, less fog. But I have to think about the nutrition in every single bite of food, every single day, Coconut is great for calories but is not a nutritional powerhouse.

re chocolate...we are not saints. Just do the elimination test to find out if it is a bad guy so that you can modify your intake accordingly.
And you know your symptoms best. For me low B12 meant more fog and fatigue. I was also getting suspicious of others...but that's me. You will have your own unique presentation. There are no symptoms for high B12. We don't really know. There were a couple of studies that suggested super-high B12 could promote certain cancers. They could not be replicated from what I read at the time. Could have changed....I really don't give a crap unless they wish to compare it to cancer rates in people with low B12 for comparison.

I think that coconut is amazing btw. It has significant, dose-dependent anti-inflammatory effects with me. (only lasts a couple of days after I stop). If I had one piece of advise it might be to try some coconut milk smoothies. I make my own kefir and I am undecided as to whether it is the coconut, the microbes or both that are so helpful to me.

Take care, brad

 

[surfbaby]

I don't know if nicotinamide would work or not....I used plain old niacin. Brand doesn't matter but it has to come in a capsule so you can pour it under the tongue.

@stridor
Thanks for sharing more of your story, and for your interest in my eye story. I have more questions on your recent post, but still recovering from new refrigerator delivery yesterday. The more you tell me, the more pieces of the puzzle come together, therefore more questions! Not sure if I like the new fridge, but too exhausted to think about it right now. I think I have to find a way to make it work if I don't want to go through this again.

Will post again as soon as I can think straight, but meanwhile want to order Niacin ASAP as part of new order I'm placing hopefully over the weekend. Just wondering what brand of Niacin you use and how many mg do you pour under your tongue, and how often for symptoms? What are your usual overmethylation symptoms? It gets a bit confusing for me because some of the symptoms for overmethylating, PFD/donut hole, methyltrapping and imbalance of MF to MB can be similar, making it difficult to figure out what's going on sometimes. I was mistaken, it is nicotinic acid, not nicotinamide that @caledonia recommends for overmethylating in her guide.

Also I thought @ahmo was doing extra mb12 instead of Niacin for both overmethylation and histamine reaction. @ahmo am I wrong about that? It does seem to help me with histamine reaction from MF, so maybe that's why I got confused.

@caledonia Can you clarify if nicotinic acid is exactly the same thing as Niacin, and do you still recommend Now Foods? Their label just days Niacin, unless I am looking at the wrong product. How do you recommend taking it for overmethylation?

 

[surfbaby]

MTR in combination with MTRR will make someone a bit of a B12 sink. When I was taking one needle a day, I could still get into trouble if I took too much mfolate. A couple of times I needed some niacin to zero things again. The symptoms of this were brain-fog and cognitive processing problems.

The niacin taken sublingually worked very well. Freddd told me that this was not a methyl block problem because that does not happen when someone has B12 in place. A light went on and I increased the B12 and never had a problem with mfolate again.

@stridor
Sorry just realized you already told me your overmethylating symptoms. It is overmethylating you were dealing with in this situation right? Sorry my brain is still a bit fuzzy today. Still wouldn't mind if you could clarify by answering my questions in the above post. I still do get confused about symptoms of overmethylating, PFD/donut hole, methyltrapping and imbalance of MF to MB.

I wish my eyes and brain allowed me to read and study more. The way you explain things really helps me understand, for which I am very grateful! Sometimes I tend to be extremely literal, but that's how my brain processes things.

BTW, I did try something you suggested and will explain in my next post what happened. Hopefully it might shed light on something.

 

[caledonia]

[USER=90]@caledonia Can you clarify if nicotinic acid is exactly the same thing as Niacin, and do you still recommend Now Foods? Their label just days Niacin, unless I am looking at the wrong product. How do you recommend taking it for overmethylation?[/USER]

The label on the bottle doesn't specify, but if you go to Now's website, they state that it is nicotinic acid.

This is per Ben Lynch - 50 to 100mg every 4 hours, but even more often if the symptoms come back. As often as every hour or even half hour if necessary. You might have to do this for several days depending on how badly you've gotten yourself overmethylated.

80mg worked best for me. If you're getting the niacin flush, it won't hurt you, but it might be a sign you're doing too much.

 

[surfbaby]

@caledonia
Now Foods does have 500mg in both a capsule and tablet, but their website just says Niacin (Vitamin B-3). It doesn't say nicotinic acid anywhere. Is this the right one? I am sensitive like you, so 500mg would have to be divided into additional capsules or a tablet would have to be cut up to get a lesser amount. Do you recommend the capsule or tablet?

In your Guide, you recommend a "slow release" nicotinic form if niacin. However some on the forum pour it under their tongue, perhaps for faster relief. Doesn't that seem the opposite of a slow release? Doctor's Best makes a 500mg tablet that specifically says Niacin (as nicotinic acid). I've seen 2 different labels for Doctor's Best, one called Real Niacin and one called Niacin (Time-Release with niaxtend). They probably changed the name at some point, because both have the same UPC code and both say nicotinic acid and 8-hour extended release or time-release, no/low flush. What do you think of this one?

I like the ingredients in the Now a little better, especially the capsules, but I want to get the right one. I might be trying mb12 injections soon, and want to have some on hand. Does it really matter if it's nicotinic acid or just plain niacin, and does it have to be slow release? If so, hopefully they didn't change the formula of the Now Foods, because it doesn't say nicotinic acid or slow release on their label or website now. Thanks!

 

[stridor]

@surfbaby

So, in general terms I am an under-methylator and this tends to be the case with most people on this site I suspect. Low methylation is associated with high histamine. I used to know more about that relationship it seems to me but it is not coming to mind.

In 2011 and part of 2012, I was in methyl block. The vitamins that my Dr prescribed had lots of methylfolate but only 100 mcg of cyanocobalamin. He thought that this was fine because he was adding methylcobalamin to the IVs that I was getting every week. They had Vit C, some of the B's and ACE = adrenal cortical extract. I spent thousands trying to save the adrenals to no avail.

The problem was (and still is because they won't listen to me) that the methylcobalamin was left on the counter in the light and therefore was converting to hydroxocobalamin. Nothing wrong with that providing that a person has the capacity to use it.

It was only 1000 mcg anyway and you know that is less than I personally need.
Methyl block was horrible. I was crushed under CFS, depression, brain-fog...any activity like going to an appt meant that I was going to be worse for 3 days. I never drove for 11 months because I did not have the mental or physical capacity. I called myself a "zombie".

I was not on this site because I couldn't figure out how to use it nor understand what anyone was saying. I was still several months away from factoring genetics and methylation into my health issues.

I didn't recognize the condition for what it was because a) I had never heard of methyl block b) I had not figured out the MTHFR thing back then c) I was chelating mercury and though that was creating the hell I was living in every day. I was pushing too hard because my muddled mind thought that if the Hg was gone that my immune system might do something about the 100 polyps in my colon.

That methyl block would have responded to more B12 and this is where @ahmo is coming from I suspect.

The truth of the matter is that I only needed niacin 3, maybe 4 times. All before I increased my injections to twice daily. And all on days that I was putting close to or more than 4 mg of methylfolate under my tongue.

I never measured or rationed mfolate. It got to the place where I was just reaching for it instinctively and that is what I wanted. The issue was that the boundary between not enough and too much was not clear. Not enough gave me fog and fatigue and too much...fog and fatigue. Usually, I got it right though.

BTW. I am me and "you are you". Most people do not have to put mfolate under the tongue.

Regular niacin or the non-flush with inositol should both work. I needed only one dose and I didn't measure. I opened the cap and poured part of it under my tongue. Within a few minutes things would return to baseline...which still wasn't too good back in those days

In December of 2011 someone on-line reached out to me and told me that I needed B12 . My B12 level was always high and I kind of doubted it but gave it a shot anyway. I was still on the vitamin with the mfolate.

My tongue swelled up and split - it looked like raw meat and was about as sore as tongues get I suspect. I took this as a clear and unequivocal sign that my body was rejecting the B12.

It turned out to be low B2 = riboflavin. The confounder was that I was taking B2 at the time. This was before I figured out that my gut does not absorb some things well. I was taking B2 but my pee wasn't "Vit B yellow" because I wasn't absorbing it.

There is a thread on here called "A B2 Story" or something like that where I talk about this.

Anyway, I ended up sick for another 8 months until the same guy convinced me to try B12 again. I developed symptoms of B2 deficiency again only this time I pushed the B2 until I pee'd yellow. After some probiotics I was able to decrease to 300 mg a day. Plus, I inject a couple of mg every morning,

Again, "you are you" - I think that my B2 problem is somewhat unique although there was some recent interest in how it factors in to methylation problems somewhere on this site I believe. My gut gets most of my attention now.

 

[caledonia]

@caledonia
Now Foods does have 500mg in both a capsule and tablet, but their website just says Niacin (Vitamin B-3). It doesn't say nicotinic acid anywhere. Is this the right one? I am sensitive like you, so 500mg would have to be divided into additional capsules or a tablet would have to be cut up to get a lesser amount. Do you recommend the capsule or tablet?

In your Guide, you recommend a "slow release" nicotinic form if niacin. However some on the forum pour it under their tongue, perhaps for faster relief. Doesn't that seem the opposite of a slow release? Doctor's Best makes a 500mg tablet that specifically says Niacin (as nicotinic acid). I've seen 2 different labels for Doctor's Best, one called Real Niacin and one called Niacin (Time-Release with niaxtend). They probably changed the name at some point, because both have the same UPC code and both say nicotinic acid and 8-hour extended release or time-release, no/low flush. What do you think of this one?

I like the ingredients in the Now a little better, especially the capsules, but I want to get the right one. I might be trying mb12 injections soon, and want to have some on hand. Does it really matter if it's nicotinic acid or just plain niacin, and does it have to be slow release? If so, hopefully they didn't change the formula of the Now Foods, because it doesn't say nicotinic acid or slow release on their label or website now. Thanks!

I'm having trouble figuring out if Now did maybe change their formula.

The other one I've used is Blue Bonnet Niacin 100mg. It says nicotinic acid on the label. It seemed to work and feel the same as the Now to me.
http://www.iherb.com/Bluebonnet-Nutrition-Niacin-100-mg-90-Vcaps/11692?c=SA

If you're unable to decide, you can always get a bottle of what Ben Lynch sells.
https://www.seekinghealth.com/niacin-100-capsules

 

[surfbaby]

I'm having trouble figuring out if Now did maybe change their formula.

The other one I've used is Blue Bonnet Niacin 100mg. It says nicotinic acid on the label. It seemed to work and feel the same as the Now to me.

Thanks caledonia! I will go with the Blue Bonnet.

 

[surfbaby]

@stridor
Hi Brad,
I really identified with some things you said in your last post, and had tears in my eyes reading it. I know what it's like to be stumbling on this forum, pressing all the wrong buttons because I couldn't see or think, sometimes losing long posts I'd written in the process, etc. (My eyes have actually improved a little since FP.) Trying to make sense of all the info that could help me get well, but not be able to interpret or understand it all, even tho I used to have a genius IQ. For me, also trying not to mourn losing so much of who I once was in the process of telling my story, which can be both cathartic and depressing to dwell on.

Ahmo recommended that I reach out more, but having lived mostly in isolation for the last 10 yrs since my youngest left home, I was nervous about that, esp when my brain wasn't functioning right most of the time. Too much sensory input is hard for me. Even though our posts have been long, something about the way you express yourself clicks with me, and I don't get too overwhelmed. I am so grateful that you are helping me, you have no idea.

Months ago, I think someone on the forum got irritated with me asking too many questions when they were explaining something really important to me. When I pressed further, they just stopped responding, no matter how much I apologized for whatever I had done to irk them. That really devastated me and upset me for awhile, because I just don't have the social and emotional chops to deal with stuff like that yet. So please let me know if I am bothering you too much, and what would work best for you with our posts. If you ever wanted to pay it forward to someone who has been floundering, I am really benefitting from your help! You are a really kind person, and I think people who have gone through as much as we have develop more empathy than perhaps the average person, tho I don"t like to generalize or judge anyone.

I don't know if I'm an under-methylator or not. I seem to recall having symptoms on both Freddd's under and over-methylator lists. I do have histamine and mast cells though (the blood blisters in my mouth/tongue). I have a lot of symptoms with my mouth and tongue too. It is one of my most bothersome problems. Btw, you did not tell me your mast cell/histamine history. Please do direct me to that thread.
Please direct me to B2 thread too, just in case.

I'm sure I had methyl block going on too when I was on that high folic acid protocol that caused severe B-12 deficiency and almost crippled me. When my numb feet and legs came back to life, the pain was excruciating, much worse than the initial numbness and tingling. Nerve regeneration can be very painful. I could barely stand on my painful feet for quite awhile. I really blew it when I stopped taking mb-12 around 5 years ago, thinking I was "well." Btw, I am debating between mb-12 and Hydroxy injections, based on my snp's. I have tolerated Hydroxy injections in the past, but will ask you more about this in my next post.

I also have ongoing gut problems that are worse in about 2 month cycles, as well as high arsenic from brown rice. I knew this protocol would be risky if I didn't treat gut/heavy metals first, but the previous gut protocols and EDTA IV chelation were so hard on my body/brain and really set me back. I am already doing most of the dietary recommendations for gut issues (very strict diet, including no sugar except fructose in Enzy's and very little in coconut butter, non-gmo/organic/no processed foods, as well as high "good" fat diet/great cholesterol like you). Not sure if I can do kefir because I am sensitive to fermented foods, tho I've wanted to. Let me know if you want my chocolate snack recipe...contains only organic dark cacao powder, coconut oil, coconut butter, and optional sweetener. I wouldn't mind getting your coconut kefir recipe just in case I can tolerate it.

Btw, what were your Bipolar symptoms? I don't know that I have that, but I definitely have a lot of brain & emotional issues...probably some genetic, some from the serious B-12 deficiency that almost crippled me, and probably PTSD from 30 years of one illness or accident or botched surgery or other trauma after another. I think I told you about the cabinets crashing on my head in my first post to you with my background history. I think that is coming back to haunt me as I'm getting older.

Also I think I might have pyroluria in my family, based on a questionnaire ahmo shared. My daughter went on the protocol after I told her about it. I'm sure my late mother had it, and my sister suspect she might too. We were always called high strung and maybe even neurotic in my family. Very high energy, big personality people who are either super sociable or withdrawn/secretive at times in our lives. Our family is known for having a temper, it's even called the "blank" family temper ( there is the secretiveness, ha!) A little socially awkward at times or over-the-top. Main supplements are zinc (which has helped me already), P5P (which made me have terrible neurological symptoms at both 50mg and 25mg, tho I tolerate 2.5mg in my B-complex), and GLA ( I have a good borage oil but haven't tried it yet).

Last thing to share for now. You said because I am not MTHFR, but I am MTR and MTRR, maybe I don't need as much mfolate. Based on your suggestion, yesterday morning I tried taking an extra 1/4 Enzy mb12 without also increasing my MF. I have tried that before in the past, and the same thing happened again. Towards the end of the dissolving of the Enzys, I started feeling a little keyed up and jittery with a little tightness in my chest (a symptom I get from too much adb12 too). My take on it is for some reason I need a certain amount of MF to balance the mb12, but I'm not sure. My intuition is not always great at figuring out my symptoms. What is your take on it?
Since I'm so sensitive, you can see why I'm nervous about change. Thanks as always for all your help!

 

[ahmo]

Also I thought @ahmo was doing extra mb12 instead of Niacin for both overmethylation and histamine reaction. @ahmo am I wrong about that? It does seem to help me with histamine reaction from MF, so maybe that's why I got confused.

Yes, that's correct. I began this strategy because I didn't really want to damp down my methylation attempts. And I found that whenever I experienced discomfort, eg. restlessness, euphoria, (as noted by Freddd), breathlessness, taking a 1mg B12 helped very quickly. Sometimes I put the B12 in my gums, and then went to sleep. Sometimes, but not always, I would add the additional amount of B12 to my total in the following days. It does seem that the reactions I had were likely histamine.

 

[stridor]

@surfbaby
Certainly I would never have made it without the "kindness of strangers". I love the direction that Dr Google is taking medicine.
I used to be sensitive and very intolerant of criticism and anything that I perceived as judgment. These things surprisingly are symptoms and not personality traits. I think that was one of the biggest insights for me. Things like suspicion of other's motives were not permanently etched in stone.

While we may have some similarities, I sense that we are on different paths. That doesn't mean that I have nothing to offer necessarily but it does mean that not everything that worked for me will be helpful. But that is OK. Even when 2 people are on the same path there is a pile of trial and error involved.

I have symptoms of being both an under and over methylator too and unfortunately that impacted my openness to the notion that I had problems.....that and my B12 levels always being high. I think you may be right in that things like histamine or infections or anything else that can affect the metabolic pathways can complicate the picture. I would be surprised if many of the people with complex health issues and end up at sites like this would fit neatly into one catagory or the other.

I was hospitalized 5 times for Bipolar. As I said, it resolved when I moved against mercury and I categorize it as being "Mad-as-a-Hatter". In 2001, I was constantly cycling. I could be silly at times but quick to take offense and I could turn on a dime to being angry and paranoid if I took offense to anything. People were against me, in my mind.

The depressions would last about 10 days or so and I would be confined to the couch or bed all day except after supper when I could watch a bit of TV. I would watch the same movie three nights in a row not remembering any of it. My mind was off-line when I was depressed.

I used to be unkind. It is a hard thing to reconcile with. I don't recognize the person who got to live most of my life. In the end, I have forgiven him and moved on. A Bipolar life is a life of perpetual apology.

Bipolar is on a continuum and starts with cyclothymia which you can google. It is bipolar-lite.

@ahmo and I have some similarities in how we have responded to the methylation supports. Comb through the forums and see if there are any others with similar responses to yours. If you spent a week doing nothing else and found something useful then it will have been a week well spent.

There are lots of horror stories about how EDTA has messed up people with serious mercury toxicity. Some of the mercury detox programs will only work for the marginally toxic. They are designed in a way to be convenient to the naturopath and provide a revenue stream.

I chose the Cutler Protocol and have no regrets about that decision. Much safer and I had full control over what is a nasty process. Hg does not leave without a fight.

My sense of it is that while a person might be able to make in-roads with optimization of the methylation pathway, so long as mercury and to a lesser extent lead around, the person will plateau. Some will spin their wheels a long time and not progress further. The half-life of mercury in the brain is at least 15 years and that is after all exposure has stopped. Remind me, do you have mercury amalgams?

I haven't read up on it but I suspect that pyroluria is another condition that might create a plateau. This is something for you to look into further.
Have you seen this thread that I started?
http://forums.phoenixrising.me/index.php?threads/mitochondria-mercury-methylation-mycoplasma.40763/

My fight for health took a big step forward when I stopped looking for THE problem and stopped searching for THE magic pill. I had to fix the Hg poisoning, deal with a serious B12 deficiency, deal with gut issues including losing my colon, treat chronic infections and sort out histamine. Not exactly a walk in the park

Stick with it. Fog and cognitive issues made my progress a bit slower than it needed to be otherwise but it did not paralyze me. I still found my way out.

 

[ahmo]

As I said, it resolved when I moved against mercury and I categorize it as being "Mad-as-a-Hatter".

Amazing. You are a very fortunate , and hard-working, man.

Comb through the forums and see if there are any others with similar responses to yours. If you spent a week doing nothing else and found something useful then it will have been a week well spent.

My fight for health took a big step forward when I stopped looking for THE problem and stopped searching for THE magic pill.

 

[surfbaby]

While we may have some similarities, I sense that we are on different paths. That doesn't mean that I have nothing to offer necessarily but it does mean that not everything that worked for me will be helpful. But that is OK. Even when 2 people are on the same path there is a pile of trial and error involved.

@stridor
After a bad experience with Solgar 5mg MB12 (in my ongoing effort to find an Enzy alternative), I decided to order the MB injections, arriving Thurs, 10/6. I did get the 10mg/ml so I could do smaller injections, tho the pharmacist thought the 1mg/ml might stay in the SubQ longer due to the increased volume, so hope that wasn't a mistake. I'm hoping you might be able to write back soon with answers to the following questions on mb-12 shot techniques. If you don't have time to write back quickly on such short notice, or only have time to answer a couple questions, I will just wing it until I do hear from you.

1. Do you wipe both the vial and your skin with alcohol? I am very sensitive to alcohol and antibacterial wipes, so I sometimes used to just clean with water. Hope that's not unsafe, but I wouldn't want to trigger sensitivities that make me unable to gauge how the MB is affecting me.

2. You said you inject perpendicular. Do you inject all the way to the hilt of the needle to get it as deep into the SubQ as possible? I am very thin, so don't have much to pinch up, but will do my best to get it in all the way if that's best. My insulin syringes are a maximum of 3/10ml with 31G needle.

3. After what you said about SL absorption, I definitely don't want to start with 20% of my current Enzy dose (3.5 mg 3x/day) To start, I was thinking about substituting just one of my 3.5mg doses with a 10% injection of around 300-400mcg (prob the PM dose so I can just go to sleep if I feel bad). Do you think that's still too much? I could easily start with as little as 100mcg. That's up to the first tiny line on the syringe, but I could eyeball a fraction of that 1st line if you think that's still too much.

My main concerns about doing too much (or too little):
3a. Being out of balance with my MF dose, which is 1,400mcg 3x/day. After your story about severe methylblock when the doctor had you on very high MF and only a little cyanocob, I hope I'm not taking too much MF (especially since I'm not MTHFR).

3b. Triggering overmethylation. After finally finding the over/under list, I do have symptoms of both, but I think I have more under-methylating symptoms, and my physicality and personality is more like an under-methylator, so hopefully that won't be an issue. I still do get confused about all the side effects to watch for, since so many are similar.

3c. If I do too much, it will likely trigger brain fog and some very painful healing symptoms in my legs, feet, and tongue/mouth. That happened somewhat both times I tried 5mg SL, but I think injections would be more intense. It brings back some traumatic memories of recovering from B12 deficiency before. Also since I am mostly alone taking care of myself, I can't be incapacitated and unable to walk, etc.

4. Do you wrap all your vials in foil as soon as you get them, even if they're in an amber bag? I will be getting multiple 1ml vials, because I chose to get preservative-free although it cost more, just to make sure no additives were triggering any reactions. College Pharmacy said all their beakers are wrapped in foil, but they don't work in the dark, so there is some light exposure. Everything is tested again for potency 2 weeks after it is made, so hope their MB is good.

5. I went back and forth a lot trying to decide between MB or Hydroxy, because Amy Yasko recommends Hydroxy for my snp's, due to brain issues and I think possibly a tendency towards overmethylating for my snp's (even though I think I lean to under-methylation). Caledonia said if I wasn't already having major mood swings at the MB doses I'm on, it might not be a problem for me. There is heated debate on the forum about this, but most on FP believe the MB is far superior and we shouldn't listen to Yasko. Do you think @Freddd seems to have the right science behind MB?

I've done both types of injections over the years and thought I did better on hydroxy but I can't remember for sure after so long. However I definitely could not tolerate the hydroxy sublinguals I tried, but could tolerate MB SL. I did have an allergic reaction the first time I tried a .5mg (500 mcg) MB injection in 2004, but that was the first time I ever took MB in my life. It never happened again, but I got scared and switched to Hydroxy, and I do remember being able to tolerate 1 mg injections of that. Thereafter in 2008, I went back to MB injections but don't recall taking more than 125-200mcg and only a couple times a week, and never felt great on it. Subsequently the College Pharmacy records show that I went back to hydroxy one final time in 2012, but I never ordered it again, so it probably didn't agree with me either then. Obviously I wasn't doing any of it properly then.

6. Do you have any recommendations on if I should increase the amount of potassium I am taking when I start injections? Currently I take TwinLab potassium citrate 400mg 3x/day, and I eat a can of salmon every other day that has around 500mg. I also have an old Rx for 8MEQ time-release Potassium Chloride on hand for emergency. I remember feeling really bad at startup probably because I wasn't taking enough potassium, but there were so many symptoms I didn't know what was going on.

Your last post gave me a lot to think about and follow up on. I still have much to research from your previous posts, like about the B2. Thank you for sharing your Bi-Polar experiences. I can't imagine going through what you went through. What I have experienced might not be Bi-Polar, but I used to have mood swings when I was younger, mostly related to hormone cycles, and much more of a temper (though I am very mellow now). My mood has become much more "even" since the protocol, but I don't feel as upbeat, if that makes sense. That could just be depression from getting older and not being well though. I was born in the 1950's so probably a lot older than you!

I do want to retest heavy metals soon, but even tho I have mercury amalgams, only the arsenic showed up as high. Everything else was minuscule. Hope you don't mind if I ask you about your experiences with Cutler in the future, tho I wonder if I can tolerate it.

P.S. I am still not very good at navigating through the forum yet. My eye sensitivities makes my time online limited. So any pointers you have on where to go would help. You previously mentioned trying to find others with similar snp's. How would I do that? I'm not really even sure where our Detox home page is. I usually just do Searches, but that might not find everything esp if my Search parameters are not done correctly. Also what is a sticky thread? Ahmo once mentioned that. Thanks again, as always!

 

[stridor]

Try hydrogen peroxide, that's what I use. Usually I wipe the vial and syringe but it may not be a huge deal. Diabetics don't always wipe their skin anymore (someone jump in here if you have other information). The top of the vial isn't going to grow much in the fridge either. So a quick wipe should suffice IMO.

I wrap my vials in tinfoil as they are light sensitive. A vial will last 2 weeks and I have concerns about the time out of the fridge. In the fridge, the extras are wrapped and are also in a dark plastic bag.

Even if you are thin, I don't think you will have a problem pinching for a needle that size. Congrats on the 31G - there will be times you won't even feel it. But yeah, deep sub-Q.

I am not comfortable advising your dose. You decide but just keep in mind that you can always add more but you can't take it back and with that in mind you will want to start small. From what you wrote I think that you are on the right track.
Things like you wrote in 3c will help you choose carefully.

You are getting way more B12 than I was back then, Even a 100 mg injected represents 40x daily requirement for most people. Remind me how you came to the dose of mfolate that you take again?

Freddd is right for Freddd. Lucky for me, I have responded as he did to mB12 but not everyone will. mB12 will convert to hydoxocobalamin if it is exposed to light is what I read on this site, although I never tried to verify it. If this is true and I bet your pharmacy knows, you could have a back-up plan.

If you had an allergic reaction to mB12 or any sort of serious untoward reaction then it would be prudent to take the first injection in the dr's office or at least have a friend at hand and a plan.

I am not a potassium expert and only used it for a while. The amount that you are taking would be enough as far as I know.

I don't know what a sticky thread is, never heard of it. And you are not looking for people with the same SNPs so much as people whose story seems to line-up with yours. I have no clue what Freddd's 23andme result looks like and it is not important to me. I never did find anyone else on my path but I felt that Freddd was the first guy that "I got".

I was born in the 50's as well. And this brings my quick reply to an end

 

[surfbaby]

ou are getting way more B12 than I was back then, Even a 100 mg injected represents 40x daily requirement for most people. Remind me how you came to the dose of mfolate that you take again?

Thanks so much for your quick reply! I was surprised we're close in age. For some reason I thought you were younger. As I get older, most people I encounter are younger than me.

FYI, I came to my dose of MF by starting with a small dose, probably 1/4 of a 400 mcg Solgar because I had just started taking 1/4 of a 1,000mcg Enzy MB along with a small amount of adb12 as per Freddd's Protocol in several guides on the forum. Then I just kept increasing the MF by 1/4 tablet first and then MB by 1/4 tablet the same day or next day depending on my response.

As time passed, I usually increased them at the same time, because that just seemed to work. Too much MF would cause a slight histamine reaction, and the extra 1/4 MB was the antidote, thanks to a heads up from @ahmo. Adding more MB than that made me jittery. Since the MF is less mcg per tablet, I just ended up taking more mcg of MB than MF, which I have a feeling might be right for me, since I am MTR/MTRR and not MTHFR. Freddd says to keep steadily increasing both, but I'm not sure at what point that should change, and I don't want to get methylblock or overmethylate from too much MF. Any thoughts on this? Please jump in @ahmo if you have any thoughts.

ahmo also suggested trying to increase MF by 100 to 200mcg every other day or so, but I could never go that fast or increase by more than 100mcg of MF at a time. In the beginning I think I tried to go a little faster, but ultimately I only ended up increasing 3-6x/month. That's how I ended up at the doses I'm at now, to answer your question.