B-12 - The Hidden Story

Deltrus

Senior Member
Messages
271
Hey guys I know this thread is about b12, but does anyone know different, more absorbable forms of thiamine?

I read that very high dose biotin can upregulate the thiamine transporter in biotin-thiamine responsive basal ganglia disease. Doses of 350 mg, which is quite expensive but imo worth a try for CFS sufferers who experience the symptoms . I'l probably buy some bulk biotin from purebulk next month after a neurologist meeting.

Anyone know any other things which can increase b1 absorption/transport?
 

Johnmac

Senior Member
Messages
758
Location
Cambodia
Hey guys I know this thread is about b12, but does anyone know different, more absorbable forms of thiamine?

I read that very high dose biotin can upregulate the thiamine transporter in biotin-thiamine responsive basal ganglia disease. Doses of 350 mg, which is quite expensive but imo worth a try for CFS sufferers who experience the symptoms . I'l probably buy some bulk biotin from purebulk next month after a neurologist meeting.

Anyone know any other things which can increase b1 absorption/transport?

You could try transdermal, if you can afford it:

http://www.b12oils.com/BGroupBuy.htm
 
Messages
56
@Johnmac

once again thanks a ton. i have made quite a progress. and learnt to titrate. if i dint increase every day i crash again :bang-head:

i have successfully made it to (1:98) 25 drops. did i understand it right, u said we almost double the dose every 3 days. i.e 33% increase from the previous days and thus doubles by the 3rd day.. if we get anxious we need to slow down a little.


i understand u r now out of this and busy trying trans-dermal oils. hope its going great for u. Appreciate your inputs.



And fever is in there too. (You said you were flu-like.)

If you are as sensitive to carnitine as I am (admittedly only a few are), you would need to start lower than that. I have built up to 2 mg over several months. Starting as you have would have floored me.

My synopsis of Freddd's liquid carnitine titration method:

Put 98 drops of water in a small glass. Put 1 drop of liquid carnitine in.

Take 1 drop of that solution & put it in a glass of water. That gives you a 100mcg dose.

Drink that on an empty stomach. Do that 3 times a day.

Next day do the same, but add one extra drop to one dose. Day 3 add one extra drop to 2 doses - etc. So you double the overall dose every 3 days.

If you want to speed up the titration, you can take the drops hourly.

Keep the original solution in the frig for the day. Discard at the end of the day.

If you get anxious, drop back to the original dose. Then when it abates, increase by 1 drop a day.

After several months to a year of 'feathering', you end up stable on 1 to 2-3 doses a day.

Good luck...
 
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Johnmac

Senior Member
Messages
758
Location
Cambodia
Hi Suraj,

Titration is pretty variable & individual I think. I could only increase a drop or 2 a day for a long time; then when I switched to the B12 oils I could titrate up in leaps & bounds.

(I crashed pretty low for a week when cold turkeying off carnitine: probably should have done it slower. But that isn't much relevant to you.)

Yes, anxiety was always the thing to watch with carnitine: shows you your current ceiling.

Glad you are doing well...


@Johnmac

once again thanks a ton. i have made quite a progress. and learnt to titrate. if i dint increase every day i crash again :bang-head:

i have successfully made it to (1:98) 25 drops. did i understand it right, u said we almost double the dose every 3 days. i.e 33% increase from the previous days and thus doubles by the 3rd day.. if we get anxious we need to slow down a little.


i understand u r now out of this and busy trying trans-dermal oils. hope its going great for u. Appreciate your inputs.
 
Messages
19
Hey guys, I think I have a clinically proved b12 and mfolate refeeding syndrome, maybe you'll find this interesting:

When I first started taking mb12 and mfolate, I was on verge of being deficient in Bs (blood b12 around 240 and folic acid at 6), I also had mild leukocytopenia, neutropenia, lymphocytosis and low platelet count. Funny thing is that after about a month of taking very small doses of mb12 and mfolate (20mcg and 200mcg respectively daily - I cannot tolerate more due to low grade fever which is my main symptom) my blood morphology in general got a bit better, but now I have high PDW and low MPV, which is very characteristic for megaloblastic anemia, which is caused by deficiency of b12 and/or folic acid. Therefore taking mb12 and mfolate caused blood changes characteristic for b12/folate deficiency.

Do you think that I should increase the dose despite some adverse effect (higher fever, histamie problems)? Could it be the way to overcome them and finally feel better?

PS. I also take 1g LCF and adob12 (0,5 mg once a week). Now my b12 is 350 (240-800) and mfolate 7,5 (3-18) - altough I am aware of little value of those blood tests. After supplementation with vit Bs my homocysteine dropped from 12 to 5,5.

EDIT: I read that low copper may also be a cause of megaloblastic anemia and I may be on the lower side with that mineral.
 
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Messages
63
Hey guys, I think I have a clinically proved b12 and mfolate refeeding syndrome, maybe you'll find this interesting:

When I first started taking mb12 and mfolate, I was on verge of being deficient in Bs (blood b12 around 240 and folic acid at 6), I also had mild leukocytopenia, neutropenia, lymphocytosis and low platelet count. Funny thing is that after about a month of taking very small doses of mb12 and mfolate (20mcg and 200mcg respectively daily - I cannot tolerate more due to low grade fever which is my main symptom) my blood morphology in general got a bit better, but now I have high PDW and low MPV, which is very characteristic for megaloblastic anemia, which is caused by deficiency of b12 and/or folic acid. Therefore taking mb12 and mfolate caused blood changes characteristic for b12/folate deficiency.

Do you think that I should increase the dose despite some adverse effect (higher fever, histamie problems)? Could it be the way to overcome them and finally feel better?

PS. I also take 1g LCF and adob12 (0,5 mg once a week). Now my b12 is 350 (240-800) and mfolate 7,5 (3-18) - altough I am aware of little value of those blood tests. After supplementation with vit Bs my homocysteine dropped from 12 to 5,5.

EDIT: I read that low copper may also be a cause of megaloblastic anemia and I may be on the lower side with that mineral.

Try copper for a week and see what happens if that is what you may think. IT shouldn't hurt (unless you are copper toxic).
 

CCC

Senior Member
Messages
457
EDIT: I read that low copper may also be a cause of megaloblastic anemia and I may be on the lower side with that mineral.
Try copper for a week and see what happens if that is what you may think. IT shouldn't hurt (unless you are copper toxic).
Or, just taste a copper tablet - put it on your tongue. Our experience is that it tastes like lollies if you're low in copper. It tastes bland or even disgusting if you're okay to high in copper. A mad craving for dark chocolate also indicates low copper for us - but that might have more to do with the overall diet.

Or, if you want to be careful, just get a serum and a ceruloplasm copper blood test.

One thing for sure, you don't want to supplement copper if you don't need it.
 
Messages
19
Thanks for your replies. I just received late lab results taken 3 weeks ago saying I'm just at the verge of being copper deficient. Now I'm supplementing with 5mg copper daily and I'm going to test it again in 2-3 weeks.
 

CCC

Senior Member
Messages
457
Thanks for your replies. I just received late lab results taken 3 weeks ago saying I'm just at the verge of being copper deficient. Now I'm supplementing with 5mg copper daily and I'm going to test it again in 2-3 weeks.
Be careful. We did 2mg for a week, then very occasionally a single 2mg tablet as required by symptoms and the taste test. After about 3 months, we ended up with a slightly high serum level, but normal ceruloplasm. Our zinc was low, though, despite supplementing with 15mg/day the whole time.

Maybe you should ask to have your zinc tested when you go back? It's a critical balance to have right.
 
Messages
19
Be careful. We did 2mg for a week, then very occasionally a single 2mg tablet as required by symptoms and the taste test. After about 3 months, we ended up with a slightly high serum level, but normal ceruloplasm. Our zinc was low, though, despite supplementing with 15mg/day the whole time.
Maybe you should ask to have your zinc tested when you go back? It's a critical balance to have right.

Thanks for the insight! I tested zinc with copper last time (taken about 3-4 weeks ago) and it was fine, exactly in the middle of range, but now that you say it, I'm going to repeat zinc, copper and blood morphology in 2 weeks. I started taking 30mg/day zinc 4 days ago. I hope it will put copper and zinc in balance... 3 days before the blood test I'm going to stop both zinc and copper, so that the results are not pumped by the supplements.

I have low DAO, an enzyme degrading histamine, which is made of copper and now that I'm supplementing it with active vit B6 (another co-factor) hopefully my body is finally producing DAO properly and that's why I need a lot of copper. or it's the B12 + mfolate combo creating blood cells along with copper... we'll say anyway.
 
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CCC

Senior Member
Messages
457
This was on a B2 thread, but it seemed better to post here.

There was some Japanese research with several diseases all having neuropathic problems and low CSF cobamain. They found a "threshold" of healing for the CNS and they suspected "upregulation" of the neurological healing. A couple of us did a series of tests and found that the threshold was greater than 6mg and <= 7.5mg in an SC injection with a 5 star MeCbl. We found that 7.5mg 4x per day or 10mg 3x per day and for some 15mb 2x per day worked for continuous neurological healing. This 30mg dose is right in the neighborhood of the 50mg dose of which they were speaking.

The dose proportionate effectiveness with SC MeCbl in the body is about up to 3mg injected SC according to a number of sources and my own experience. That equates to about 15mg sublingual for as long as 2 hours. Then no noticeable effect until somewhere in excess of 7.5mg (30-50mg sublingual for 2 hours). If a person has CNS damage of many varieties a 5 star MeCbl SC injection, of 7.5mg will usually be noticeable in 1-2 hours. Done IM it will get high enough serum level to get into the CNS for about an hour. A 7.5mg dose has that for 6-8 hours, 10mg 8-10 hours or more depending upon what kind of CSF/cobalamin problem the individual has,. There is a second threshold in the CNS at 7.5mg or more, as verified in quite a few people now. The frequency depends a lot upon how slow your CNS takes it in or how quickly it gets dumped form the CNS. Another Japanese study used 2.5mg of intrathecal injected MeCbl with diabetic neuropathy. The high B12 lasted in the CSF from less than 3 months to more than 4 years in different people.

@Freddd , this comment focuses on mB12. How does that differ from your experience with adoB12?

We're in the situation of getting enough methylB12 from the Australian adeno/methylB12 oil. But the demand for extra sublingual adenoB12 can be very high some days - up to about 10 or even more of the 8.6mg adoB12 sublinguals. I'm guessing that's the CNS bucket from your comments above.

Have you seen others with this huge demand for adenoB12? (Or, has anyone else had this same experience?)

Is there any explanation for the demand for adenoB12 rather than methylB12?
 
Messages
3
Hi
@Freddd


Im in a fix and need your inputs here.

Im on your protocol for 7 months. my current dosage is as below image.
upload_2016-4-29_14-26-25.png
  • b1+b2+b3 <75mg in 2 divided doses , folate @30mg, MB12@12mg, adb12@2.5mg
  • all minerals in MG/Mcg
  • titrated LCAR +ALA sustained
  • potassium at 6 gm (6000mg), :jaw-drop:, vit c at 12gm
  • Missing - TMG, SAM-e

with great difficulty I titrated LCAR for 3 months ( as u say first 75-125mg is challenging) then in a week I scaled up to 1000mg jarrow liquid. this was very exciting. but then again I ran out of energy, I added ALA 300mg sustain. I was supper energetic for a day. and crashed there after and went into severe inflammation & paradoxical folate deficiency.

I'm wondering what to do , as I have done the recommended dose of 30 mg folate, and potassium already at 6gm.
If I add more folate am not sure what could happen to my potassium requirement ( further up).
I had take a emergency exit from protocol due to inflammation & Paradoxical folate deficiency.

The only piece I was waiting to add was TMG & SAM-e , but inflammation & Pardoxical-folate-Def was so bad I dint get chance to add.


I exited the protocol after 7 months, in 2 days I started experiencing all my old symptoms of breathless ness, need for oxygen etc. dint I not make a 1% progress.

could you guide me how to handle this situation. I added all the vitamins in the order said. not sure which cofactor was missing at that point.
 
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Strawberry

Senior Member
Messages
2,139
Location
Seattle, WA USA
Can someone please let me know what it means if B12 subq injections doesn't do anything at all? I don't feel energy, anxiety, sleepy, or anything that I have heard of. I have been tight on time (yes, I insist on still working even though I shouldn't) so I have only taken 2 injections. From my notes it looks like it is methyl b12, 10 mil. It is one full needle.

thank you in advance!
 
Messages
3
Can someone please let me know what it means if B12 subq injections doesn't do anything at all? I don't feel energy, anxiety, sleepy, or anything that I have heard of. I have been tight on time (yes, I insist on still working even though I shouldn't) so I have only taken 2 injections. From my notes it looks like it is methyl b12, 10 mil. It is one full needle.

thank you in advance!
Hi @Strawberry

Guess you do not have the required co factors for the B12 injection to do its job. As freddd says, only the 1st inj may make you feel good, but later u have no effect , what so ever. I recommend you to go through the basics at below link.
http://howirecovered.com/active-b12-therapy-faq/

also A Guide to Freddd's Protocol is a detail pdf how to execute the protocol and the cofactors. its a great starting point.
 

Strawberry

Senior Member
Messages
2,139
Location
Seattle, WA USA
Thanks @jack I will read over the weekend. This stuff doesn't seem to stick in my mind for what ever reason, but hopefully now I know a specific non response, I can find it and remember it.
 
Messages
3
Thanks @jack I will read over the weekend. This stuff doesn't seem to stick in my mind for what ever reason, but hopefully now I know a specific non response, I can find it and remember it.

@Strawberry "This stuff doesn't seem to stick in my mind for what ever reason" its a clear sign of B12 Deficiency. Good luck with your journey ahead.
 
Messages
56
Hi Guys

I have a emergency here, pls help. i think i took Whey for 5 days. and stopped it immediately. now i have folate deficiency. im already at 45mg of folate and still have folate deficiency. and b12 is not working. and have pin and needle sensation and folate deficiency.

does any one know how to clear up this and come out of this trap. Please please please help.
 

CCC

Senior Member
Messages
457
Hi Guys I have a emergency here, pls help. i think i took Whey for 5 days. and stopped it immediately. now i have folate deficiency. im already at 45mg of folate and still have folate deficiency. and b12 is not working. and have pin and needle sensation and folate deficiency.

does any one know how to clear up this and come out of this trap. Please please please help.

I looked quickly for Freddd's experience with this. His solution seems to be go back to the basics of folate, MeCbl and then AdoCbl.

It was a report of experience of 10 people directly who did a trial, including me, nobody's hypothesis or theory. We had to know and had no idea it would be so damaging. I take sufficient B12 that I have a "usual" level visible in my urine. When on 10mg doses of MeCbl injection 3x per day, adding glutathione makes my urine look like 60 mg injections. It is highly visible being ejected from the body. Folate deficiency symptoms started increasing in 2 hours and got more severe daily and started causing additional demyelination in 2 weeks. I did this with 9 other people taking different precursor forms, whey, commercial products. Every one of the 10 people had a full group of increased symptoms, the only difference was me at 2 hours and others up to 2 weeks depending upon dose and form. Also, for those with certain polymorphisms in certain genes, and it is unknown how many variations there are, it has a hallmark symptoms of "catastrophic b12 deficiency" upon taking glutathione because of a problem with the CblC protein that supposedly protects the B12 from the glutathione. The effect for be is almost instant. Everybody in the N=10 trials had the similar results in the end though I had the most rapid and severe reaction and the most damage. One man was a vegetarian. Hey at the beginning so was I. So everybody each took a different path to deficiency, all had good responses and a lot of healing with MeCbl, AdoCbl, l-methylfolate and carnitine and we all had the symptoms return; folate first then MeCbl and then AdoCbl.

Also, the result is often called "NAC detox" and "glutathione detox" which turns out to be severe folate deficiency symptoms followed by both kinds of B12 deficiencies. Just look them up, plenty of google "hits" and descriptions that can be looked up.

Doing Glutathione - Strong Reactions! | ProHealth Fibromyalgia, ME ...
forums.prohealth.com › ... › Fibromyalgia Main Forum
Aug 4, 2010 - 21 posts - ‎10 authors
This includes NAC, any combination suppliment with NAC or reduced ... Then the next day all CFS and fibro symptoms are amplified many times. ..... treatment lessens the severity of the glutathione induced detox symptoms.

Debra's Natural Gourmet | NAC: One of the Best Supplements
debrasnaturalgourmet.com › Adam's Corner
Mar 1, 2010 - For immune function and detoxification, plus liver health, mental health,.... only 25% of the group receiving the NAC developed symptoms, vs.
Here are descriptions of "detox" from elsewhere.

Also Deplin (straight Metafolin) has "no side effects different from placebo" where as Cerefolin-NAC (Metafolin with NAC) has side effects from the NAC that amount to methyltrap which is to say folate deficiency symptoms as on the group 2 and 3 on the list.

If you go to his post, you can read the rest of his symptom list

Version 1.4 09/25/2015
Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.

Group 2a - Both {meaning symptoms relieved by potassium and methylfolate}

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both {meaning symptoms relieved by potassium or methylfolate, and sometimes you need both}

Headache, Increased malaise, Fatigue

Group 3 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels
These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. ... For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.
Old symptoms returning

Edema
Angular Cheilitis, Canker sores,
Skin rashes, increased acne, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue
Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,
Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,

Longer term, very serious
Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily

Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start..
 
Messages
37
Location
NZ
Hi Guys

I have a emergency here, pls help. i think i took Whey for 5 days. and stopped it immediately. now i have folate deficiency. im already at 45mg of folate and still have folate deficiency. and b12 is not working. and have pin and needle sensation and folate deficiency.

does any one know how to clear up this and come out of this trap. Please please please help.
Sorry I can't help you but my personal emergency measure is some hot water with 3 spoons of apple cider vinegar and some honey in it. I don't know about folate etc. Maybe you are reacting to the whey too.
 
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