• 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 shot even if not deficient?

PeterPositive

Senior Member
Messages
1,426
Help for what? Can you be specific?
Have you tried taking B12 in other forms? Maybe oral or sublingual? What type and dosage?
 

fibrodude84

Senior Member
Messages
191
Help for persistent fatigue and weakness. I get b12 from multi and food. I'm not deficient but wondering if I may get an energy boost from an injection.
 
Messages
67
Just bear in mind that the only reason, as far as I know, that people are injected with B12 is because they are missing "intrinsic factor" which carries B12 through the stomach acid. So the fact you are not deficient in B12 shows you are not one of the people with that problem.
 

PeterPositive

Senior Member
Messages
1,426
I am not familiar with B12 injections. They are certainly very effective according to the medical literature and the experiences of people from this forum.

Many people here, myself included, have experienced significant benefits from high dose B12 supplementation. Personally I take sublingual tabs, never done shots. I started slowly at 500mcg and increased over time to 5-6000mcg

The problem with "not being deficient" is ... how do you know you don't really are? Lab test simply show serum B12 which is close to meaningless at spotting a deficiency unless it's really a major one. Vit B12 is a really complicated substance that requires transformation, activation, transport and folate support. If any of these mechanisms is not working correctly you can get a deficiency even if your lab shows "normal" values.

B12 runs the central wheel of the methylation cycle, but many people with CFS/ME have it half blocked or slow running... this is another issue where deficiency symptoms can arise without being detected by most labs.

So, bottom line is trying. B12 is possibly one of the least toxic water-soluble vitamins and if you build the dosage slowly enough you shouldn't have any problems. If you do, stop immediately and if you can consult with a medical doctor before starting, much better. Unfortunately not many mainstream docs are up to date with active B12 protocols and methylation issues.

The best forms would be Methyl-B12 and Adenosyl-B12 which have different functions in the body, the latter being active in the mitochondria for energy production while the former works with the nervous system.

Final recommendation take also a look at the B12 threads by Freddd. He's an advocate of active B12 protocols and has a long experience of B12 supplementation both orally via injections. He also provides lots of details on how to work with the two different forms of active B12 and how to add methyl-folate, which is essential for proper methylation functioning and works in conjunction with B12.

cheers
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
My B12 levels are normal but I'm wondering if the shot might help anyway. I'm desperate.

HI fibrodude,

The B12 tests that give a "normal" range are very misleading. I was dying and having a neurodegenerative disease from b12 deficiency while having "normal" levels. They are dangerously misleading. What are your symptoms. As much b12 research says, "Only a trial can tell if b12 can help you". However, a sublingual trial of both active b12s and l-methylfolate and LCF can tell you that. Sublingual MeCbl and AdoCbl can be 100to 10,000 times more effective than CyCbl injection you are most likely to get. I was dying while and partly because I was taking CyCbl.

I think the best starting point is learning more about what you are doing and then go about it in a way that could help. What are you symptoms? Here is a list that gives nutrient responsive symptoms of FMS/CFS/ME etc.

SYMPTOMS LIST 07/26/14

In this post this is a list of symptoms that are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations of nutrients.

These symptoms responded almost entirely or entirely with basics 5 star MeCbl – methylcobalamin – Methylb12 - Mb12 - Mecobl . Many started improving in hours. Others took 9 months to correct.

morning joint stiffness and pain
paleness
acid reflux
nausea
daily vomiting
standing with eyes closed, lose balance
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
fecal incontinence - occasionally to frequently
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
sleep disorders
non restorative sleep
Night terrors
Prolonged hypnagogic or hypnopompic states transitioning to/from sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
taste hallucinations
smell hallucinations
sound hallucinations
visual hallucinations
alterations and loss of smell
loss of smell and taste of strawberries specifically
loss or alteration of smell and taste of potato chips specifically
roughening and increased raspiness of voice, mb12 can smooth in mid word
blurring of vision - can be sudden onset and sudden return
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atrophy
centrocecal scotomata
hypersensitivity/intolerance to bright light
intolerance to loud sounds
intolerance to multiple sounds
burning muscle pain
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
sore burning tongue

This is a list of symptoms that are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations of nutrients.

These symptoms responded strongly first to 5 star MeCbl and then Metafolin with basics. Many started improving in hours. Some took 7 years to correct.

Bursitis
stomach not emptying
frequent vomiting
acid regurgitation
dyspepsia
flatulence
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 containing foods
nutrient specific anorexia
intermittent constipation
intermittent diarrhea
irritable bowel syndrome
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bulimia
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to body malfunctions, symptoms
Hypersensitivity to sounds and noises
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)
Low blood serum level - below 550pg/ml, Japanese Standard
elevated MCH (Mean Corpuscular Hemoglobin)
elevated LDH
big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
platelet dysfunction, low count
white cell changes, low count
hyper segmented neutrophils
headaches
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs
inflamed endothelial tissues - lining of veins and arteries
mucous becomes thick, jellied and sticky
asthma
chronic cough that mimics asthma but isn't
chronic sinus congestion
dermatitis herpetiformis, chronic intensely burning itching rash
frequent infected follicles or acne type lesions all over body
chronic infections, many varieties possible
Seborrhic dermatitis
dandruff
eczema
dermatitis
skin on face, hands, feet, turns brown or yellow if anemia occurs
poor hair condition
thin nails
transverse ridges on nails, can happen as healing starts
mouth sensitive to hot and cold
sore burning tongue
beef-red tongue, possibly smoother than normal
sore mouth, no infection or apparant reason
teeth sensitive to hot and cold
canker sores


with p5p added

Elevated blood serum Hcy, borderline or higher


These symptoms responded relatively partially first to 5 star MeCbl and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.




splits/sores at corners of mouth -angular cheilitis
impaired white blood cell response
poor resistance to infections
easy bruising
pronounced anemia
macrocytic anemia
megablastic anemia
pernicious anemia
decreased blood clotting
MCV > 93 first warning,
MCV > 97 alert
MCV > 100 outright macrocytosis
MCV > 105 urgently needs treatment, severe problem

Plus Vitamin E
Child with neural tube defects

mother of child with neural tube defect

These symptoms responded not at all first to 5 star and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.


lack of dreaming
MCV > 100 outright macrocytosis
macrocytic anemia
metallic taste in mouth
Widespread body & muscle pain responding to NSAID
Joint pain responding to NSAIDS
splits/sores at corners of mouth -angular cheilitis


Sexual related symptoms, both men and women – These responded with the most response to lesser responses in order to MeCbl, Metafolin (l-methylfolate), AdoCbl, L-carnitine fumarate

reduced libido - loss of sexual desire
loss of orgasmic intensity
unsatisfying orgasms
inability to orgasm
loss and/or change of genital sensations
burning genital skin sensation
unable to feel aroused
numb genital skin
low sex hormones

MEN

In order of response – MeCbl, AdoCbl
low testosterone men

In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
erectile disfunction men

In order of response – MeCbl, Metafolin, AdoCbl
low sperm count
poor sperm motility
Poor sperm quality
no sperm


WOMEN

In order of response – MeCbl, AdoCbl
low testosterone
low estrogen

In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
post partum depression
post partum psychosis

In order of response – MeCbl, Metafolin, AdoCbl
Frequent miscarriage

In order of response – MeCbl, Metafolin
False positive pap smears, defective cells
menstrual symptoms


Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13, Version 1.1

Others mentioned similar patterns and variations.

1. Initially – Mecbl

2. +5 months 400mcg SAM-E

3. + 4 months AdoCbl

4. + 3 months titrate +50mg zinc

5. +4 years 400mcg Metafolin

6. +1 year LCF

7. + 1 month TMG 1000mg/day

8. 30mg MeCbl injections (3 or 4) daily,

9. +0 Reduce SAM-e to 200mcg

10. + 4 years remove TMG

11. +6 months increase SAM-E to 800mcg

12. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect.



These symptoms are what responded very well to CNS penetrating doses of MeCbl either as 50mg sublingual single 4-5 hour dose or 4 x 7.5mg or 3 x 10mg or for some 2 x 15mg subcutaneous MeCbl injections. Metafolin in some way enhances retention of AdoCbl and MeCbl with excretion visibly decreased. A sublingual dose of 1-2 tablets each hour added for 12 hours appears to generate substantial CNS penetration as well.



CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


Elevated CSF Hcy
Low CSF cobalamin
limbs feel stiff
Drowsy


CNS penetrating dose MeCbl – AdoCbl
dimmed vision - usually not noticed going into it because change can be very slow or present for life
Clumsiness


CNS penetrating dose MeCbl – AdoCbl - Metafolin


Slow to adapt to night vision


CNS penetrating dose MeCbl – AdoCbl – Metafolin – LCF


Difficulty in word finding



CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
demyelinated areas on nerves
subacute combined degeneration
axonal degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
positive Romberg
positive Lhermittes
Loss of motor control over some or all of toes
Loss of motor control over part or all of feet
Loss of sense of joint position
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
sudden "ice pick" pain
decreased reflexes
brisk reflexes
Foot Drop
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness


Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13 Version 1.1

Others mentioned similar patterns and variations.

1. Initially – Mecbl

2. +5 months 400mcg SAM-E

3. + 4 months AdoCbl

4. + 3 months titrate +50mg zinc

5. +4 years 400mcg Metafolin

6. +1 year LCF

7. + 1 month TMG 1000mg/day

8. 30mg MeCbl injections (3 or 4) daily,

9. +0 Reduce SAM-e to 200mcg

10. + 4 years remove TMG

11. +6 months increase SAM-E to 800mcg

12. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect.


These symptoms are what responded very well to L-carnitine fumarate AND AdoCbl for the first two items


L-carnitine fumarate – AdoCbl – Metafolin - MeCbl


weight loss involuntary
muscular atrophy
exercise does not build muscle



L-carnitine fumarate – Metafolin – AdoCbl - MeCbl

weight gain, watery fat
edema


L-carnitine fumarate – AdoCbl – MeCbl – Metafolin


mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatigability
severe abnormal muscle fatigue up to and including apparent paralysis leading to death
weakness
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS



AdoCbl – L-carnitine fumarate


exercise debilitates for up to a week, making things much worse
accumulating muscle pains following exertion
sore muscles throughout body
lack of muscle recovery after exercise
High urinary MMA



AdoCbl – L-carnitine fumarate – Metafolin

congestive heart failure
Elevated CSF MMA
Elevated uMMA


Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1

Others mentioned similar patterns and variations.

1. Initially – Mecbl

2. +5 months 400mcg SAM-E

3. + 4 months AdoCbl

4. + 3 months titrate +50mg zinc

5. +4 years 400mcg Metafolin

6. +1 year LCF

7. + 1 month TMG 1000mg/day

8. 30mg MeCbl injections (3 or 4) daily,

9. +0 Reduce SAM-e to 200mcg

10. + 4 years remove TMG

11. +6 months increase SAM-E to 800mcg

12. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect.





MeCbl - AdoCbl – L-carnitine fumarate – Metafolin

shortness of breath, oxygen hunger
heart palpitations


MeCbl - AdoCbl – L-carnitine fumarate

extremely sore neck muscles reversing normal curvature of neck
painfully tight, stiff muscles, especially legs and arms
frequent muscle spasms anywhere in body
weak pulse



MeCbl - AdoCbl

Confusion
Disorientation
Difficulty in word finding


MeCbl - AdoCbl - Metafolin

irritable
depression
SAD - Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
dizziness - even unable to walk
Vertigo


MeCbl – Metafolin – AdoCbl – L-carnitine fumarate

psychosis, including many of the most florid psychoses seen in literature, megaloblastic madness
Alzheimer's
delirium
dementia
paranoia
delusions
hallucinations - multisensory
anxiety or tension
nervousness
mania
Widespread pain throughout body



A caution, those with anxiety and panic symptoms may respond with extreme moods of increased fear, anxiety, panic, anger rage, homicidal rage and profound depression, usually in repeatable sequences following LCF or ALCAR even at levels of 1mg oral. A micro titration of carnitine would be cautious. While most find the moods intolerable, certain persons have been able to tolerate these (both past) and current, to find they can fade after some months of consumption. A few people may find similar, maybe somewhat lesser, response to MeCbl or more likely AdoCbl. As these are less controllable than LCF which can be micro dosed, they should be considered first.
 

caledonia

Senior Member
  • The serum B12 test is useless - it can read normal or high and you can be deficient
  • B12 from a multi is oral and is therefore useless - at best it only absorbs 1-2%
  • Cyanocobalamin - used in most multi's is a synthetic form and not well absorbed
  • The best forms are hydroxycobalamin, or methylcobalamin + adenosylcobalamin
  • You can get B12 from the diet, but not enough to dig out from a deficiency
  • The latest info is that sublinguals might be even better than injections
  • Sublinguals bypass the stomach so it doesn't matter if you gut problems
Check out B12 Info #1 and #2 by Chris Kresser (linked in my signature).

Have you checked with your doctor to rule out other reasons for fatigue and weakness????
 

fibrodude84

Senior Member
Messages
191
I'm going to try sublingual b12 and see what happens. Doctors have tested much over the years with no indication.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I'm going to try sublingual b12 and see what happens. Doctors have tested much over the years with no indication.

Hi Fibrodude,

Right now my 5 star rating is on the Enzymatic Therapy B12 infusion, 1mg MeCbl. An it is best if held between bum and lip for 45-120+ minutes.
 

fibrodude84

Senior Member
Messages
191
I didn't see Enzymatic Therapy so I purchased Jarrow Formula methyl b12. It's not sublingual but sounds good.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I didn't see Enzymatic Therapy so I purchased Jarrow Formula methyl b12. It's not sublingual but sounds good.

Hi Fibrodude,

Unless it has changed again, it went down to maybe 3 stars about 2-3 years ago and doesn't give the same level of neurological healing according to a bunch of us all crashing at about the same time. I had a demyelination event a few months after it went bad. I had CNS startup all over again with 30mg of ENZY. Many of the online sellers have it for about half the price of local stores often. NONE of them can be indicated as "sublingual". The FDA forced them to change their labeling a few years ago. "SUBLINGUAL" is for proven medications from official trials according to the FDA.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Ahhh. I was going to demand pictures of @Freddd's contortion act holding that ET between bum and lip. :rofl:

My daughter the gymnast might have been able to do that at 12. I can't even imagine the flexibility that position would require. If you see me in it assume I am seriously injured.
 

fibrodude84

Senior Member
Messages
191
Hi Fibrodude,

Unless it has changed again, it went down to maybe 3 stars about 2-3 years ago and doesn't give the same level of neurological healing according to a bunch of us all crashing at about the same time. I had a demyelination event a few months after it went bad. I had CNS startup all over again with 30mg of ENZY. Many of the online sellers have it for about half the price of local stores often. NONE of them can be indicated as "sublingual". The FDA forced them to change their labeling a few years ago. "SUBLINGUAL" is for proven medications from official trials according to the FDA.

I spoke to Jarrow and asked why they don't carry sublingual and they said some of it is released through the oral mucosa and others in gut but that their research doesn't substantiate that sublingual does much good. I'll try this one and if it doesn't help I will try a liquid or under the tongue wafer.