• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

B12 shots...helping or masking?

Messages
49
Location
ct
I have been sick for 1 1/2 yrs now. Extreme fatigue, nervous, shakey, chills. Down and out and unable to work or get off the couch. Been on xanax to try to calm things down. Monday I got my 1st b12 shot. Today I was NORMAL. My allergies were gone, as was my nervousness. I had energy. It was like the past year was just a bad dream. My Dr said to take 1 shot a day for 2 weeks and then taper down to 3 times a week. My question is .will the b12 eventually stop working? I realize this may not be the cure , cause everyone on this forum would be out jogging. Will I have to keep upping the dosage to get the same effect? And why does b12,seem to make my symptoms go away..even if its temporary?
 

Idie

Senior Member
Messages
134
Hi Equestrian,

For some reason (which no one has been able to explain to me), I felt normal the first day after my first B-12 shot too. Unfortunately, it does not last. I did the whole 14 day regimen too. By day 14, I still felt lousy. This when I started on the Methylcobalamin B12 sublinguals. It took a very long time but eventually I had several "normal" days. I should point out something that Fredd told me. All of us have new "normal" situations. If you feel ill for more than a year---that is your new normal. When you been improved for some time---that is your new normal. I now consider "normal" for me to be days when I am not short of breath, extremely fatigued, shakey, etc. The really good news is that lots of my worst symptoms are gone. If I stop taking B-12 for more than 3 days some symptoms return.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
Have you checked your B12 level? I was so deficient years ago I had vertigo constantly and many problems. After getting my level up, I no longer have those problems. Everyone is different. Usually B12 is just one of many supplements needed but it is so important.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Yea, get the B12 levels checked, and also rule out Pernicious Anemia. You would be very fortunate if this were your problem rather than me/cfs. But it needs to be checked.

I have real me/cfs and B12 (Hydroxycobalamin) dramatically relieves my symptoms for 1-2 days per dose. It does not last, but I would not call it "masking the symptoms". It will only make me worse if I over do the stress/exertion boundaries while feeling better on it. Otherwise, no harm done and it allows me to have more of a life.
 
Messages
49
Location
ct
Tristen. I have had my b12,checked. It was down. I took supplements and levels came. Up. Was checked for anemia..not the problem. I am glad to hear that b12 shots keep working. I was concerned that I might build a tolerance to it. How long have you been on it?
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Tristen. I have had my b12,checked. It was down. I took supplements and levels came. Up. Was checked for anemia..not the problem. I am glad to hear that b12 shots keep working. I was concerned that I might build a tolerance to it. How long have you been on it?

I've been on it for about 5 year without any tolerance noted. I used the Hydroxy B12 injections in the beginning, and they work great, but are quite costly. I've been using the Hydroxy B12 mega drops for about 2-3 years now....it works almost as well. http://www.holisticheal.com/hydroxy-b12-mega-drops.html
 
Messages
49
Location
ct
Update. Had iv vitamin-amino acid drip a few weeks ago and really crashed for about 2 weeks. Have been on b12 injections for about 3 weeks and started Freds methyalation protocal a few days ago, and feel like my energy is slowly coming back. I am also on valtrex and Monolaurin for the past few months. Stopped most of my other supplements . Still take allegra every day for allergies and xanax for shakes. Will keep you posted as to my progress or regress.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Update. Had iv vitamin-amino acid drip a few weeks ago and really crashed for about 2 weeks. Have been on b12 injections for about 3 weeks and started Freds methyalation protocal a few days ago, and feel like my energy is slowly coming back. I am also on valtrex and Monolaurin for the past few months. Stopped most of my other supplements . Still take allegra every day for allergies and xanax for shakes. Will keep you posted as to my progress or regress.

Do you know if there was glutathione in the IV? Doctors often give more glutathione in IV's than ME patients can easily tolerate. I had a bad experience with a vitamin IV with glutathione.

Best wishes,
Sushi
 
Messages
49
Location
ct
Hi sushi,
Yes there was. They added it at the end. Dr wanted me to have this iv 2x a week. No way. Never again. The iv burned the whole 2 hrs of the drip. I had ice packs on it the whole time. Just didn't seem right.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
My experience with B12 shots FWIW, is that initially at 500ncg Methyl b12 sub cut a day i got terrible excitotoxicity after a week, but no good effects. Then i dropped down to 250mcg a day and the side effects went away and the positive effects began. For me this was a general lessening of feeling unwell. Gradually more energy, less poisened feeling, less fluey, enevlope increased etc. My activity level went up a couple of points. Have been doing them for about 10 months. I usually have one day off a week. Now what has happened is that the improvement has not continued. I started to feel really very well about a month ago - some days near normal- and then i overdid it and havent been able to climb back up. The b12 i think is working as a great antioxidant cover - i know i have high cell free DNA so i suppose its helping this. But the posisitve effects seem to have plateued, and i am nowhere near feeling as good as i did last month.

Still its by far the best treatment i have used to date.
all the best, Justy.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
I was on weekly IV Amino Acid infusions for a year. Doc said it was necessary for brain healing together with the anti-virals. Felt better after each infusion, as well as gaining long term improvements.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
My experience with B12 shots FWIW, is that initially at 500ncg Methyl b12 sub cut a day i got terrible excitotoxicity after a week, but no good effects. Then i dropped down to 250mcg a day and the side effects went away and the positive effects began. For me this was a general lessening of feeling unwell. Gradually more energy, less poisened feeling, less fluey, enevlope increased etc. My activity level went up a couple of points. Have been doing them for about 10 months. I usually have one day off a week. Now what has happened is that the improvement has not continued. I started to feel really very well about a month ago - some days near normal- and then i overdid it and havent been able to climb back up. The b12 i think is working as a great antioxidant cover - i know i have high cell free DNA so i suppose its helping this. But the posisitve effects seem to have plateued, and i am nowhere near feeling as good as i did last month.

Still its by far the best treatment i have used to date.
all the best, Justy.

Hi Justy,

There could be any number of reasons for mb12 to stop working. among them is missing cofactors like no adb12 and LCF among other things. Also, for most crystal batches for injections and most brands there is a ceiling on neurological healing well below what Jarrow and ET can do. Also, could be some other missing cofactor.

REASONS WHY B12 AND FOLATE THERAPIES DON'T WORK FOR MANY PEOPLE Version 2.0 - 03/10/11
Version 2.1 - 05/08/11


1. They take an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesnt work, oh well, thats the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesnt work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
6. They dont take BOTH active b12s.
7. They dont take enough active b12s for the purpose.
8. Lack of methylfolate
9. Folic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
10. Folinic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
11. Lack of other critical cofactors.
12. Lack of basic cofactors
13. Glutathione, glutathione direct precursors or NAC is taken causing what is often called "detox" while actually being induced folate and b12 deficiencies.
 
Messages
49
Location
ct
Fredd
What is LCF? Have been on your b12 protocol and have had a good week. But crashed today. Not sure if I got a Mold hit or took too much of dibencozide b12's. Is it that delicate a balance?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Equestrian,

No, not dibencozide, once you have taken a few doses, it no longer will have any dose specific effects at any reasonable dose. The balance with adb12 isn't that delicate. Wehn things have been going along well, usually a crash" is a result of an induced deficiency, something is miossing or not enough. What are your symptoms of crash?
 

place

Be Strong!
Messages
341
Location
US
Hey Equestrian,
I ride and I can tell you some barns are just filled with mold or hay has got mold in it. Mold for me is the top of the list for offenders.

Good luck
 
Messages
49
Location
ct
Hi Fredd,
Crash symptoms are light headed..no energy, shakey, heart palpatations. Totally down and out. I am currently taking
B12 injections 3x week. Daily I take valtrex 1 gm 3 x day, .25 xanax, monolaurin 3x day, allegra, enzmatic therapy b12 infusion 1 x day, dibencozide b12 1x day, perque activated b12 3x day, adb. B12 1/2 capsule 1x day, daily energy infusion 1/2 per day, multi vit, d3, co q10, omega 3. Does it look like I am missing something? I may have gotten a Mold hit the other day. Not sure if that triggered my crash. But am feeling alittle better today.
Place..had to give my Horses away when I got sick. Definately think Mold was the trigger for my illness. Never had allergies, now I have them big time.