B-12 - The Hidden Story

[Crux]

Jaz;

Hi Jaz, Honestly, I feel better too when I can help someone else, even in the smallest way!

It seems to me that you are responding to the jarrow's. Even though it's weaker, it still has some potency.
When nerves are healing, there can be some uncomfortable tingles and zings. It can take some months for the tingles to stop. The areas become smaller, then smaller, and less intense, less often.

The muscle spasms may be from the need for more potassium.

Unfortunately, the fatigue can be slow to leave. ( As I recall, it took at least 3-4 months to begin to go.)

Freddd encouraged people to combine Enzymatic Therapy with Jarrow in the past. He wrote that there was some sort of synergy. He now only recommends ET. He's looking for other effective brands.

I don't remember very well, but I think it's recommended to take the sublinguals with an empty stomach. ( I usually do.)

Since only a certain amount can be absorbed by the body at one time, it may be better, more economical, to take it in divided doses, such as several times each day.

Regarding your question about finding one's personal dosage amount....I've found this to be very difficult. In the beginning, one may need alot more for a time. ( loading doses) Then after a time, ( 1-3 months, I guess), one could reduce the dosage and find a maintenance dose.

I've been having this problem lately. I've recently lowered my dosage because I finally began to feel over-methylated. ( I'm still working on this, some of the effects were from having too many methyl donors. Some people need more than others; this is one complicated process.)

Sorry that the paresthesias have spread, but now you've got the remedy, MB12. If you feel you need higher dosages, the AOR brand comes in 5mg. and 15mg. sublinguals.

My best to you!

 

[Jaz]

Crux
thank you sooo much for replying so quickly !!
funny enough i don't mind the tingling nowadays since i read it's a good sign after taking mb12, i would do anything to get anything close to the sense of touch i had before.
you mentioned you take the sublinguals on an empty stomach, sorry but i'm really confused since isn't the mb12 and adb12 sublingual anyway. How is it possible to spread it throughout the day and still take it on an empty stomach?
i think i read somewhere that if you eat food close to the time of taking it, it will act like a sponge and stop the b12 from getting absorbed, i have no idea what to think or when to take mine.

i didn't know that a certain amount could get absorbed at once...which means taking many at once isn't a good idea.

 

[Crux]

Jaz;

I'm not sure that it's critical to have an empty gut to absorb a sublingual, unless it allows for more tissue area to absorb what has been swallowed. ( Maybe someone will come along and explain. I'm glad there are so many informed people here, some of this, for me, is a guess.) I wouldn't worry about having a totally empty gut, just have an empty mouth. lol

Since sublingual absorption is the next best way, after injections, holding it there is a good idea. Many people take them first thing in the morning, allowing them to dissolve as slowly as possible.

Do you also have a B-complex now? It's true that the other B's support B12 activity. Folate does help with fatigue too, as well as depression. ( I've just read that many folks may need to reduce antidepressant meds. once the folate takes effect.) This is a phenomenon that should be discussed with the doc.

 

[Jaz]

Crux
yeah i am taking BioCare B-plex once per day, the first two days it made me nauseous but now it's gotten better. I am also taking Vitamin E, D3, Omega-3, Metafolin and Zinc. I get your point since i took around 10 x 1mg Mb12 today and even though i was eating for the most part of it i still got the pins and needles as well as i felt very hot, my body temperature shifted by the last pill i took few hours ago.
unfortunately i have this horrible emotional binge eating/disorder that i consume a lot of chocolate. and i know that too much sugar is very bad for nerve health...need to get that under control as well. I might have to do a low sugar diet again.

 

[Xara]

I think so. There are other things that might help also, such as ashwagandha:

Neuritic regeneration and synaptic reconstruction induced by withanolide A

Thanks! I'll keep that in mind. B12 deficiency has caused problems in my brainfunction, speech for instance (I have difficulty finding ordinary words, or I mix different expressions into a new one, or I use incorrect words, e.g. I sometimes change yes for no, or left for right - without realising it, I even deny having used the incorrect word when confronted: 'What do you mean?! I said left! We have to go left. Left!', at the same time I point to the right. )

Any other suggestions I may use to improve or heal my brain?

 

[Crux]

Hi Jaz;
I think I know what you mean about disordered eating. These past years, my appetite went away, but years before, I would have strong cravings, didn't know why.

Chocolate is a funny one. It's commonly written that chocolate cravings mean, one needs magnesium. I still had cravings even when I was taking Mg. I know there are plenty of mood elevating chemicals in chocolate, but, there is also alot of copper. Most of what we read about copper is negative, but the good news about it is that it's important for cardiovascular function, etc.

For a time, I was having side-effects from eating chocolate, so I stopped. ( insomnia, flatulence) But I found that I've been able to have it again, now that I take zinc. I think I wasn't able to tolerate high copper foods, because of low zinc.

When I first started zinc, I was taking alot of it, and had side-effects, so I reduced the amount to 7.5-15 mgs. daily. It's been great for anxiety, insomnia, the bones, etc.

My guess is that the B12 will help normalize the appetite, whether too high, or too low.

 

[Jorlev]

Hi All,
Been reading a lot of Phoenix Rising threads and find them very informative.
I don't have ME/CFS as far as I know, but have been diagnosed with SFN (punch biopsy).

Started around 2004/05 with tingling in feet which I stupidly ignored. About 3 years later it moved to calves and
thigh. Then about 1 1/2 years ago it moved very quickly to my torso, arms and hands. This seemed to coincide with
a sever stomach virus with vomiting after what I think was a bad egg (could have killed intrinsic factors or whatever absorbs B12). What was odd was after my stomach settled I started feeling disoriented, with a hydrocephphalus like pressure all around my head. I seemed to disappear and then reappeared in the fall of 2011 accompanied by dizziness that wasn't spinning but felt like I was being lifted and dropped to the ground when I walked. My brain at times felt like it was shutting down. Also developed tinnitus. (Disorientation is now gone but tinnitus remains)

Anyway, I avoid doctors like the plague but this sent me running to get tested.
Blood work came back normal, though my RBC was just below normal and MCV, MCH high (megablastic)
Thiamine was very low. Had a Spectracell test (for those familiar) which showed Folate and B5 deficiency and B3, B6 borderline. B12 was 452 which is technically not deficient but I can't be sure if I had started supplementing that beforehand or not. Started supplementing Bs especially thiamine and B12 and folate.

MRI & CAT showed no abnormalities or demylenation. EMG good conduction. Diabetes, HIV, Syph, Lyme, Heavy Metals, ANA, ANCA, Sjogen's all negative. Epstein Barr IgM - Positive but Dr showed little concern. Thyroid in range but toward Hyper side.

Took a year and a half of convincing to get all these tested done and of course they think its all in your mind and say with a concerned face "Are you under a lot of stress?" and try to put me on anti-depressants and gabapentine to mask the problem. Now that the punch biopsy confirmed the SFN, I'm being taken more seriously.

Now that you have the background, on to the questions:

I was hoping someone could update me on Freddd protocol since the 5/08/11 revision so I can get the latest board consensus on what to take for SFN. I had been taking Source Naturals Advance B12 Complex which has both Methyl and Adenosyl Cobalamin (5mg I believe split evenly between the M & A) but has regular Folate, not MTHF so will switch to MTHF. Anyway, what's the latest Jan 27, 2013 protocol? (hard to scroll thru 136 pages to find it)

I ordered the Source Naturals Dibencozide (Adenosyl), Douglas Labs B-Complex w Metafolin and Solgar Folate 8000.
Unfortunately, I also ordered the Jarrow Methyl before reading people were having problems with it.
Will give it a try before ordering other.

What are the current board consensus dosages for these supplements? Obviously, your mileage may vary and folks are taking different levels but what's the board average on dosages?

What's with the B12 Enzymatic Therapy? Seems like just another brand of Methyl. If your taking Jarrow Methyl or newer, better Methyl, why take this Enzymatic Therapy too?

How much potassium does one need to avoid depletion when taking B12? Anyone figure a ratio of B12 mg to K mg?
I prefer to get it from food and upped my bananas, potatoes and lima beans.

Any good foods / bad foods (avoid) I should know about. Eating a lot of chopped liver and clams.

Can anyone recommend any tests I should ask my doctor about with regard to SFN? Seeing a specialist at Cornell-Weill next month and want to make my time there as productive as possible. Will ask about MTHFR mutations.

So nice to have a forum for discussion with well informed, empathic folks. Any help with my questions and test suggestions would be incredibly appreciated!!!

 

[Bead Dog]

Has anyone tried the B12 or methylfolate from Ben Lynch's on-line store called Seeking Health. I have listened to his talk on MTHFR and looked at his website, He seems to really get it. Anyone have any experience with him? He is not taking new clients unfortunately.
Lucy

I just got the homocystex in last week and started taking it. So far so good. I just tested my homocysteine this week and the result is that it's not high. I have been supplementing with mb12 for a few months though. I do have CBS A360++ and BHMT 02,04,08 ++, so I figure it is still a good supplement for me.

 

[adyia]

Hi Everyone,
I've been lurking on PR for a while now, but after starting Fredds protocol, thought I should jump in, since I'm having start up issues. And it helps me feel less alone to read people's experiences on here. I apologize I have not yet read the entire 136 pages of this thread, so sorry if I repeat with my questions! I did read Freddds Active B protocol thread.

I've had B12 deficiency type symptoms all my life ( I was born anemic...) but it cycles from being mostly functional and enjoying life, to barely able to crawl out of bed and wanting to kill myself (depressive episodes). But about 3 years ago I had a severe bout of giardia ( I was not so great before that, but at least able to hold down a full time job). Ever since the giardia incident, I'm not my functional self, no matter how much sleep I get, no matter how nutritious my diet, blah...nothing seems to help. And the last several months, I'm actually getting worse. And the sadness/depressive episodes worsened. To the point I have maybe 2-3 good hours a day in which my mind is somewhat clear and I can move around without collapsing.
Since I suspected some nutrient deficiency due to a damaged gut from gluten allergy, I stumbled here and have been learning about B vitamins, and CFS and all sort of metabolic stuff that even as a Biology graduate you guys make my head spin. My main symptoms are extreme fatigue that seems worse, not better after sleeping. Poor sleep in general. Brain Fog. Depression and extreme sadness (I have life events which also have been traumatic and am seeing a therapist). Paleness. Hair loss (I HATE this). Anemia (along with very low iron levels). Blood pressure is always low. Heartbeat is always fast. Sensitive to bright lights, loud noises, etc. Peripheral nueropathy (sock and glove feeling), but I never recognized til reading these forums...I have no idea how long my hands and feet have been numb, but they certainly are. Skin is very dry, elbows like sandpaper, chapped lips, poor quality hair (what's left of it), brittle nails. Vision is fuzzy and has been slight worse recently (sometimes in summer I have moments of clear vision, especially in the sunshine). Poor digestion (gluten intolerant also) going from bouts of constipation to occasional diarrhea.

I started Freddds protocol almost 3 weeks ago, albeit somewhat modified since I don't entirely know what I'm doing. I started with 1000 mcg Enzymatic Therapy B12, 800 mcg Solgar Methylfolate, Thornes childrens multi, Sunflower lecithin, CLO, vit. D, vit. K2, potassium, and astaxanthin (just coz I have it and am trying to use it up), and sometimes magnesium and zinc. Oh, and I take Betaine HCL to help digest my food. I have TMG on hand, but didn't realize it's the same thing as Betaine HCL as a methyl donor, so haven't been taking it yet. After the first few days I did have a strange twitching in my face and took extra potassium and it went away. About a week ago I added Anabol dibencozide (about 1/4 capsule/day) and L-carnitine fumarate (a pinch).

I respond badly to wrong kind of folate (Freddds "parodoxical folate deficiency") as I recently learned from a Megafoods multi-B. I get flu like symptoms, sore throat, upper resp. congestion (this was about 2 months ago I took it). And one day I forgot to take my Solgar Methylfolate, and by the evening I was starting to get the symptoms.
So for the last three days, thinking my folate level must be quite low if I can't even go one day without it, I upped it to 1600 mcg/day.

The first few days on protocol, I had tiny itchy bumps, mostly on my ankles, which went a way in couple of days. My sleep is worse the last couple weeks. Very insomniatic, frequent waking, waking up feeling life I've been drugged or something. And my exhaustion by late evening is worse. The few good hours in a day, I seem somewhat less foggy brained, and I'm much less sad and tearful than I was. My walking and movements feel "wobbly" and I seem to be running into the sides of doorways more than usual. Last few days I'm getting a couple cystic type bumps on my scalp (B6 problems??) which I remember I used to get as a kid.
Are these good/bad signs? Am I on the right track, or do you see problems with my response?
I have been drinking milk kefir for last couple years. Since Freddd says to avoid whey, should the kefir be avoided as well, since it's basically whey with cultured milk solids?

Also, in 2 weeks I have a Dr. appt. to get my B12 levels checked. I realize I should've been tested before starting protocol, but I just was too desperate to wait, and this was the earliest they could get me in. Which tests should I insist he do? And for how long before I see him should I stop supplements so I don't skew test results?

Thoughts anyone? thanks!!
Adyia

 

[Xara]

Hi Adyia
Welcome!

At the risk of saying something you already know:
Giardia lambia is known to cause B12 deficiency. Since you already were B12 deficient before you got it, it is no surprise your condition got worse.
Are you sure you have eradicated the parasite completely? It's essential.

I recognize many of your symptoms, being B12 deficient myself, and I am sure you know: all of your symptoms may very well be the consequence of a B12 deficiency.

I am definitely no expert in methylation, ha! on the contrary, but since no one else has responded...
I have learned that methylfolate can build up, so it may take a few days before negative effects show up. You doubled the methylfolate and kept the mB12 at the same dose.
I would lower the methylfolate signicantly immediately, and would watch my potassium (would probably up my dose) and I would wait for the moment my body would calm down and I would be sleeping better. You could consider Melatonin time release, low dose (0.3 mg).
After that I would up the mB12, and then also half a tablet a day of the Solgar methylfolate, at the max. See how that goes for a week at least.

About tests. I don't expect much of a serum B12 test, you have been supplementing for several weeks and the blood will be drawn within two weeks. Same goes for the HOLO-TC, MMA and homocystein.
Doctors should not base their decisicions on B12 levels alone though, they should look at the symptoms, especially when the patient has been supplementing, and see whether injections, either hB12 or mB12 can relieve the symptoms.
Other tests that might be useful that I can think of: homocystein, despite the B12 and methylfolate supplementing it may still be too high, and check for vitamin B6 and vitamin D. (Btw you should not eat and drink for 12 hours for the homocystein.)
You could test for intrinsic factor antibodies and for antibodies against parietal cells, I have read it would have been best to have taken those tests before starting with supplements, now there is a chance they turn out to be false positive - do stop now or at least one week with the B12 intake before testing, the Dutch text said.
Other tests: gastrin, chronic gastritis type A, Helicobacter pylori. Maybe you could ask about testing for Crohns disease and gluten allergy; for gluten allergy to come out positive you must not have eaten gluten free for a couple of weeks. I do not remember much about Crohns disease. Gluten testing: blood, biopsy or genetic testing seems to be available if I remember correctly, blood's unreliable.
But I am no expert in testing either, these are just some suggestions. Most of the tests I have had myself, but it has been a while.
There are other causes for B12 deficiency as well, so please talk it over with your doctor.
Good luck.

 

[adyia]

Hi Xara,
Thanks so much for your reply!
I'll lower the folate dose back down and see how that goes.
I'll stop all supps for about a week and half prior to testing. If I was very brave, I would stop now, but I'm remarkably clear headed today and dread sinking back into the fogginess, which I feel will happen after stopping mB12. Ah, maybe tomorrow I'll stop.
I agree with the suggestion to check B6 and vit. D as well--and I think folate. I seriously hope this Dr. is cooperative, I hate battling with Dr. egos. I've seen him before for a basic check up and he's pretty standard about drug pushing and not wanting to hear a patient's opinions. At the moment I don't have anyone else to go to, so I will have to be insistent.

As for the giardia! I assumed it was resolved after the drugs I took to kill it, but I'll ask the Dr. about it. I'm thinking it's not a current problem, since when I had it, it resulted in nausea and explosive diarrhea...sorry tmi, but the symptoms were, shall we say, unmistakable.

At that time when I had giardia, with all the digestive upset, I had gluten testing done as well (it took me a month of pure misery to finally get a giardia diagnosis). I used an online lab (enterolab) and checked for wheat, egg, yeast, soy, casein, some other stuff? and did the genetic testing. I'm allergic to cow casein, soy, wheat....The genetic testing showed I am NOT celiac, but I do have two copies of another gene which predisposes me to gluten allergy. And the antibody levels show I was in fact having an allergic response to it. Oh and some other test, Anti-Tissue Transglutiminase IgA was also elevated, indicating I have an autoimmune reaction to the human enzyme tissue transglutaminase. I don't entirely understand what that means, but the explanation was that it often goes hand in hand and results from the damage and inflammation caused by the gluten allergy.
Stupidly, maybe I was brain foggy?? but I didn't take these test results as seriously as I should've. I did restrict wheat products, but I've been sloppy about it, and even up til a few weeks ago, continued taking the bread for our church's sacrament. I'm taking it seriously now
When people ask me what's the big deal about taking a little piece of bread I feel like slapping them. Ah, I know they don't understand, but really, why do people doubt other people's health issues??

thanks again for the reply. I'll take the break from supps til I am tested. I think if the tests do show low B12/low folate, I'll check into the MTHFR gene testing.
~Adyia

 

[Lotus97]

I have been drinking milk kefir for last couple years. Since Freddd says to avoid whey, should the kefir be avoided as well, since it's basically whey with cultured milk solids?

I think Freddd's only referring to non denatured whey due to the fact that it has more usable Cysteine than regular whey and Freddd doesn't want people using glutathione or glutathione precursors such as NAC or Cysteine. This is a description of non denatured whey.

ImmunoPro Rx and RenewPro are actually “native” or “nondenatured” being made from whey that has not been heated to high temperatures or treated with acid as in cheese making, which the “undenatured” products’ starting material have undergone, so that they have more cysteine present as actual cysteine per se rather than the oxidized form cystine, and cysteine is more useable by the liver for making glutathione, particularly in a person who is depleted in glutathione.

 

[adyia]

I think Freddd's only referring to non denatured whey due to the fact that it has more usable Cysteine than regular whey and Freddd doesn't want people using glutathione or glutathione precursors such as NAC or Cysteine. This is a description of non denatured whey.

Thanks for the response. Because I wasn't sure if the whey in kefir was allowed on protocol or not, I haven't been drinking it since 5 days now. Surprisingly, the last 3-4 days I'm finally perking up and having some energy. I mean, I'm not doing cartwheels, but I'm optimistic that something is improving. Mostly, my sleep is better, and of course that results in a better day. For now I'll continue to avoid the kefir whey, and maybe eat the "cheese" after draining off the whey, seeing if I have any negative effects or not with the cheese. I love dairy, it's the one thing I have a hard time avoiding. Technically I'm allergic to casein, but thought kefir (predigested, right?) might be ok for me. Maybe it's not. There might be more going on with the kefir than the whey issue (for me at least).

I did keep my folate amount up...back to 1600 mcg/day. If I skipped a dose or tried taking less, I begin to get sneezey and headeachy. Interesting.

 

[Lotus97]

Thanks for the response. Because I wasn't sure if the whey in kefir was allowed on protocol or not, I haven't been drinking it since 5 days now. Surprisingly, the last 3-4 days I'm finally perking up and having some energy. I mean, I'm not doing cartwheels, but I'm optimistic that something is improving. Mostly, my sleep is better, and of course that results in a better day. For now I'll continue to avoid the kefir whey, and maybe eat the "cheese" after draining off the whey, seeing if I have any negative effects or not with the cheese. I love dairy, it's the one thing I have a hard time avoiding. Technically I'm allergic to casein, but thought kefir (predigested, right?) might be ok for me. Maybe it's not. There might be more going on with the kefir than the whey issue (for me at least).

I did keep my folate amount up...back to 1600 mcg/day. If I skipped a dose or tried taking less, I begin to get sneezey and headeachy. Interesting.

Most people don't have a bad reaction to NAC, Cysteine, or Glutathione so even if you take non denatured why you might not feel bad. You might even feel better, but since you're doing Freddd's protocol I thought I'd clarify it. Also, if you're following Freddd's protocol you won't need any of those to boost Glutathione since methylation and the other supplements in his protocol will increase glutathione. It's only the non denatured whey though because of the cysteine so other whey should be fine. But isn't casein in most dairy or is whey casein free?

 

[adyia]

I think whey would be casein free, since the milk solids have been strained off.
I assumed kefir is ok for me, since it's cultured and the proteins are partially broken down as a result. It hasn't given me the intestinal upset which eating other known allergy foods gives me. But, to be on the safe side, I think I'll avoid it for now, and if I'm feeling amazing and healthy at some future point, will give it another try to see its effect.

One question on Freddds protocol. Since the B12 and folate dosage are above usual intake levels, should I be taking a B-complex to increase the other Bs as well? I'm worried about causing an imbalance since the B family works in synergy (at least per my understanding). I don't want to cause deficiencies in another B, while I'm raising my B12. The multivitamin I'm taking only has minimal amounts of the other Bs. I'm considering adding the AOR Advanced B complex, since it has the B vits in active forms.
Anyone have info about needing the other Bs?

 

[Lotus97]

The other B vitamins are important for the Krebs Cycle and many other functions in the body. The dosages are pretty high in that AOR b complex so you might want to start with one capsule a day. My understanding is that even though the description of AOR's b complex says folic acid, it actually is methylfolate. There's some sort of Canadian law that prevents them from saying it's methylfolate. In addition to the methylfolate, the choline and P5P in that b complex will increase the affects of methylation, but too much can be a bad thing. The B2, B3, and B5 in that b complex aren't the active forums. I question why the B2 is so low if it's not the active form.

 

[adyia]

Oh my goodness, this is so complicated. Thanks for the help. I think a foggy brain makes this way more challenging than it really is?
After reading other threads on here, I'm leaning to the Swanson Activated B, since it has all but B3 in the active form. I'm also looking at the Pure Encapsulations B complex.
I'm going to shelve this decision til I reorder my B12 in another month. Since whatever I'm doing for the last week is making me feel better, I'm not going to add any other supplements for now.

 

[Lotus97]

Yeah, swanson's does look like a better value. Just be aware that some people react strongly to methylfolate. You might want to start out with 1/2 or 1/4 a capsule and work your way up. I'm not sure what the starting dose is on Freddd's active B12 protocol, but I think his micro titration protocol says start at 200 mcg. If 800 mcg is the starting dose then that's fine, but I just want to warn you.

 

[adyia]

Thanks, I'll keep an eye on the total dosage.

 

[Little Bluestem]

Since B vitamins are water soluble and stay in your body a short time, you might want to take a low dose B complex 2 or 3 times a day rather than a high dose on once a day.