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B-12 - The Hidden Story

Freddd

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Active B12 Titration Methods

These methods can be applied to either active b12; adenosylb12 and methylb12. If a person is having a lot of startup reaction to mb12 then I would suggest starting with adb12. Either should be started on a base of the basic vitamins and minerals; A, D, C, E, B-complex that includes P-5-P and pantethine and without Cyanob12 (Jarrow B-Right, twice a day), methylfolate, magnesium, calcium, zinc (50mg) and Omega3 oils. These are so essential that they often go without saying or being taken. They are absolutely essential for healing and tissue formation. There are many other things that may be beneficial and aid healing tremendously and some critical cofactors that are essential but after the active b12s are started as they don’t work as well or at all when the b12 is short.


I will use mb12 as an example but this applies in the same way to adb12 (dibencozide). First there are a few general things to consider.
  1. Our nervous systems notice difference
  2. Unbound active b12s diffuse into our systems
  3. Higher serum levels of unbound active b12s diffuse “deeper” more quickly making more intense change.
  4. Maintained serum levels diffuse “wider” but less intense change.
  5. After a period at a given dosage level equilibrium is reached and change is maintained but not increased, healing continues at that level but not more. Healing is dose proportionate but not linearly so.
  6. An estimated 250mcg of unbound active b12 accounts for almost all of the perceived intensity until very high levels are reached. That is a 5mg tablet is not particularly perceived as more intense than a 1mg but a 1mg is more intense than ¼ of a 1mg.
  7. If a particular level is maintained all day equilibrium is reached more quickly that if that level happens once a day for 1 hour.
  8. When equilibrium is reached, perceived intensity diminishes quickly.
  9. When a sublingual tablet is removed from the mouth via physical removal or chewing and swallowing the increase in intensity stops within minutes. One can actually hold at a certain level of intensity this way.
  10. Approximately 15% is absorbed in the first 45 minutes of tissue contact time, about 1% each 3 minutes. After 45 minutes that drops to about an additional 1% each 5 to 10 minutes until gone. Maximum absorbtion appears to be in the area of 25%. This applies only to the 5 star brands. A fine degree of control can be obtained via a timed method as well as cutting the tablets.
Slow titration
Start on day 1 with 1 quarter tablet of Enzymatic Therapy 1mg or Jarrow 1mg mb12 or Country Life adb12. This can amount to a 30-60mcg absorbtion, 3x that for the adb12. Much of this will go into the tissues within the actual period of absorbtion. Taking additional quarters can be timed so as not to increase intensity. Taking a half will increase the intensity. If one only takes 1 quarter a day it is unlikely to ever reach equilibrium. I would suggest, that as long as the intensity is tolerable to take at least 8 quarters a day. After a few days, as long as comfort is maintained try ½ tablet. It’s not that there won’t be symptoms shifting and intensification, there will be. We are just trying to keep the intensity under control.

Rapid titration
Do as above with ½ or whole tablets. Over the days increase to ¼ of a 5mg, then ½ of a 5 mg tablet and finally to a 5mg tablet. At 5mg tablet 4 times a day most people will reach a stable equilibrium that is at the maximum short of injections or multiple tablets per dose. However, once one reaches this point, 2 x 5mg tablets at a time or 4x5 may be a just barely noticeable difference from 1 tablet, if there is any additional effect at all. At around the point of 50mg in 2-3 hours with multiple tablets at a time a threshold effect may be noticed. This is the point approximately equivalent to a 7.5mg injection, the point at which the Japanese research and my own experience indicates up regulated neurological healing may occur. Above that dose no additional noticeable effect occurs at up to at least 25mg injection. This may only apply to people with CNS/CSF deficiencies. That is unknown at this time. There are current Japanese studies being done with 50mg IV infusions that may define this zone more clearly. This is the area I’ve labeled as ZONE 3 on some other posts which I’ll repost here. A fast high dose repeated for several days will soon loose it’s startup effects and will rapidly diminish that of smaller doses. Approximately 20mg on day one may cause a lack of startup effect on day two for any dose less than approximately 2-5mg.
 

Freddd

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Symptoms, signs and co-correlates

SYMPTOMS, SIGNS AND CO-CORRELATES OF METHYLB12, ADENOSYLB12, METHYFOLATE AND SELECTED COFACTOR DEFICIENCIES
LAST UPDATE - Version 1.01, 08/02/09


This is an international list of symptoms. One might think that b12 deficiency is b12 deficiency. Not according to the lists that appear in various countries. One of the factors appears to be which forms of inactive cobalamins are used in the country as vitamins and for therapy. The UK which uses hydroxyb12 has a substantially different list than the USA which uses cyanob12. The UK list reflects that they also define ME as a disease and that is not done in the USA. A list from India with a lot of vegetarians has different priorities than either the USA or UK in which meat eaters predominate.

Further, instead of just saying peripheral neuropathies - paresthesias for instance, the various paresthesias are broken out giving a person more opportunity to recognize or understand what is being asked for. Further, it allows tracking and progression over time. B12 deficiencies don't cause sudden numbness of the feet. This might take months to years to develop going through a progression of paresthesias. Further, symptoms which the patient might report and signs that the doctor might note are both given giving the appearance of redundency. In a computerized scoring system it makes no difference. Some people will recognize it one way, others might use more technical terms. What's important is that they recognize it. I have also included specific unique descriptions that might catch a few additional people. Then the list has been expanded by all the symptoms that respond to the active b12s. This is a much broader list than what responds to inactive cobalamins. Then there are the co-correlates such as various autoimmune diseases that have a high correlation with low b12 but no causality determined and which once occurring, do not change back. On shear numbers, I had 185 of the nearly 300 symptoms, signs and co-correlates in every category prior to 05/21/03. I'm down to about 27 now.

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
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)
burning muscle
accumulating muscle pains following exertion
sore muscles
lack of muscle recovery after exercise
exercise does not build muscle
extremely sore neck muscles reversing normal curvature of neck
exercise deblitates for up to a week, making things much worse
painfully tight muscles, especially legs and/or arms
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
Bursitis
dyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying
flatulence
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 contining foods, nutrient specific anorexia
intermittent constipation
intermittant diarrhea
irritable bowel syndrome
Crohns disease (direction of causality if any not established)
Celiac disease (direction of causality if any not established) - gluten sensitivity
Dairy sensitivity
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bullimia
reduced libido - loss of sexual desire
loss of orgasmic intensity
unsatisfying orgasms
inability to orgasm
loss and/or change of genital sensations - "gloved" loss of sensation
burning genital skin sensation
unable to become aroused
reduced testosterone

paleness
rapid heart rate
heart arythymias
shortness of breath
heart palpitations
weak pulse
congestive heart failure
arteriosclerosis
Widespread pain throughout body
Hypothyroid (direction of causality if any not established)
High homocysteine
High urinary MMA

dizziness - even unable to walk
vertigo

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
psychosis, including many of the most florid psychosis seen in literature, megoblastic madness
Alzheimer's
delirium
dementia
paranoia
delusions
hallucinations
strange "smells" that are not present like linen being ironed, burnt odors or tidal flats etc
strange "sounds" that are not present, rustlings, mummurings, detonations etc
deja vu experiences
anxiety or tension
nervousness
mania
impaired executive function
cognitive impairment
memory impairment
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to chemicals
Hypersensitivity to body malfunctions, symtoms
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
Hypersensitivity to foods
mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
severe abnormal fatigue up to and including apparent paralysis leading to death
spastic paralysis
weakness

sleep disorders
non restorative sleep
lack of dreaming
Night terrors
Prolonged hypnogogic state transitioning to sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
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 it outin mid word
blurring of vision - can be sudden onset and sudden return
dimmed vision - usually not noticed going into it because change can be very slow or present for life
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atrophy
optic neuritis
optic neuropathy
centrocecal scotomata
intolerance to bright light
diminished hearing - gradual onset or present for life, sudden return possible
unclear hearing, garbled
tinnitus - ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
inability to pick pick out one voice amongst many
Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
neural tube defect not caused by folate deficiency or child with it
demyelinated areas on nerves
subacute combined degeneration
axonial degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
positive Romberg
positive Lhermittes
neuropathies, many types
progressive bilateral neuropathies
demyelination of nerves - white spots on nerves on MRIs
loss of detail and sensual aspects of touch all over body
paresthesias in both feet - burning, tingling,cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both legs - burning, tingling, cobwebs, wet, hair, pain, numbness, etc
paresthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
Loss of position sense is the most common abnormality (or vibration sense)
Loss of vibration sense is the most common abnormality (or position sense)
Loss of sense of joint position
hands feel gloved with loss of sensitivity
feet feel socked by loss of sensitivity
trembling
neuropathic bladder
unable to release bladder, mild to severe
urinary incontenance - occasionally to frequently
fecal incontinance - occasionally to frequently
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
standing with eyes closed, a slight nudge or bump causes loss of balance
most patients have signs of both spinal cord and peripheral nerve involvement
The effect on reflexes is quite variable
Motor impairment may range from only mild clumsiness to a spastic paraplegia
clumsiness
slowed nerve impulses
decreased reflexes
difficulty swallowing
brisk reflexes
decreased deep tendon reflex
toes turn up instead of down in reflex to sole stimulation
Positive bilateral Babinski reflex
Foot Drop
impaired white blood cell response
poor resistance to infections
easy bruising
pronounced anemia
macrocytic anemia
megablastic anemia
pernicious anemia
decreased blood clotting
low hematocrit
MCV > 92-94 first warning, MCV > 97-100 alert
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
hypersegmented neutrophils
migraine headache cycles
headaches
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs, bladder
inflamed endothelial tissues - lining of veins and arteries, etc
high CRP without infection
mucous becomes thick, jellied and sticky
dermatitis herpetiformis, chronic intensely burning itching rash
frequent infected follicles
Seborrheic 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
splits/sores at corners of mouth
Hyperhidrosis - excessive sweating
Bariatric surgery
glutathione, glutathione producing supplements such as NAC/glutamine
Dilantin,
tegretol and some other medications
Relatives, grandparant, parent, sibling, child, grandchild ever needing b12 shots or supplement
coma
seizures
brain atrophy with ileal tuberculosis preventing b12 absorbtion


MEN
erectile disfunction
low sperm count
poor sperm motility
Poor sperm quality
Zero sperm count


WOMEN
post partum depression
post partum psychosis
False positive pap smears, noncancerous cellular changes
menstrual symptoms
Frequent miscarriage
child with neuro tube defects
PMS


STARTING AS INFANT OR CHILD
delayed myelination
failure to thrive
autism
delayed speech
depression
frequent or continuous toncilitis
frequent strep
frequent pneumonia
frequent longlasting supposed viral illnesses that linger and linger and linger
everything goes to the lungs for extended periods
headaches
growing pains
skin problems
dandruff
allergies
asthma
continuous swolen glands in neck
low grade fever for years
Night terrors
Prolonged hypnogogic state transitioning to sleep
Sleep paralysis
seizures
coma
 

Freddd

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B12 ZONES OF HEALING BY DOSE AND TYPE
Version 1.11 - 07/24/009

Assumptions - Methylcobalamin and adenosylcobalamin are brands tested as 5 star for absorbtion and compared to injection by effect and colorimetry achieving 15% absorbtion or greater in 45 minutes or greater absorbtion in longer times.


ZONE 1 – Cyanob12, oral or injected any size dose, hydroxyb12, oral or injected any size dose, methylb12 oral in doses of 500mcg or less. Limited results largely confined to those changes requiring lab tests to see; reduced hcy, reduced uMMA, sometimes reduced MCV, occasionally mild changes in paresthesias and peripheral neuropathies over time. From literature and experience

.ZONE 2A – methylcobalamin sublingual 1mg to 50mg/day, single sublingual doses to 25mg and IM and SC injections up to 5mg. Dose proportionate healing of widespread symptomology. From literature, tests and experiences. Heals neurology, endothelial tissues, epithelial tissues, energy and mood. Some healing, hematological at least, is dependent upon adequate methylfolate being present. It appears that about 95% of healing takes place in Zone 2A & 2B.

ZONE 2B – adenosylcobalamin sublingual, 3mg to 60mg/day and single doses to 24mg. Less obvious dose proportionate correction and healing of a smaller more specific array of symptoms. Heals muscles, allows them to grow, energy, mood, affects neurology differently from methylb12.

ZONE 3A1 – Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 1-2 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 1-2 doses per day. Brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present. Neurological deterioration stops, limited amount of healing

ZONE 3A2 – Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 3-4 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 3-4 doses per day. Substantial brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present.

ZONE 3B1 – Adenosylb12 sublingual (Country Life), 42-60mgs per dose saturating oral cavity for 90-120 minutes, 1 dose per week to 1 dose per month. Brain and cord healing, energy and mood, but different from methylb12 was achieved with adenosylb12

ZONE 3B2 – Adenosylb12 sublingual (Country Life), 15mgs per dose under upper lip for 90-120 minutes, 1 dose per day to 1 dose per week taken in conjunction with 7.5mg mb12 injection, allowing diffusion into CSF with mb12. Brain and cord healing, energy and mood, but different from methylb12 was achieved with adenosylb12

ZONE 4 – Intrathecal injection. Enhanced neurological healing in intentionally damaged rats. Also pronounced healing of neurological damage in diabetic humans. From literature.
 

JanisB

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Hi Frickly,
My expereience confirms what Freddd said,
The nervous jittery feeling is very possibly mb12 startup. Let me explain with an analogy. For years our nervous systems have been out of gas. The output volume control is turned all the way up because the input is almost totally lacking and it's trying to do it's job. When it gets a little active b12 suddenly the input level turns way up and with the output volume turned all the way up the system is over driven. It will come down and adjust over a relatively short period. There are a couple of possible ways to deal with this that will be in my soon to post titration methods. The point is this would not be happening if you were not drasitically short on mb12. People who have normal levels and no deficiency have no reaction at all to any amount of mb12 or adb12; none at all. As amazing as that may seem to those who have dramatic and unpleasant reactions, it all comes from deficiencies. The more severe the multiple deficiencies, the more extreme the reactions. It is this very reaction that leads directly to normal energy. Good luck.
When I first started the Simplified Five protocol suggested by Rich Van Konynenberg as a modification of Yasko, I posted a blog entitled Two B or not Two B (12's that is) and talked about my experiences feeling jittery and going through mild detox on B12 and SAMe. Now I tolerate 4 2000 mcg B12 sublinguals, 10 sprays of B12, 1/2 5 gm methyl B12, and one 10 mg adenosyl B12 without any of those problems.

The rule is: start slow, reduce if symptomatic -- don't be afraid to powder a pill and take a little pinch -- and build up slowly. Think like a farmer after a drought. When the ground is bone dry, a heavy rain runs off; a slow, gentle sprinkle gradually softens the soil and prepares it to receive a heavy rain.
Janis
 

Freddd

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In the 5 years I've been helping people through b12 startup I have never seen a genuine "bad reaction". I seen plenty of intense reactions people called "bad reactions" but upon examination they never were. All of them did resolve through a variety of tactics from changing the order of startup to titrating and/or adding cofactors or simply having patience. I had a real knock your socks off first time and was floored for an hour or more. It took more than a month to reach equilibrium. About the time I would have reached equilibrium the first time I ran out of Enzymatic Therapy and switched to the zero star brand. Startup ended abruptly and within 3 days my burning bladder and tongue and other things started coming back. When I switched to Jarrow after a week the startup started up full force all over again and took almost a month to finally come to an end through a total saturation method. Nine months later when I started adenosylb12 I had one day of intense startup from that and it was over. When I started l-carnitine fumarate I had intense energy/jittery for a month until it smoothed out after starting TMG. SAM-e had fairly intense startup that lasted for a week. But nothing else matched the mb12 for shear massive variety of shifting and intensified symptoms and outright intensity.

People without deficiency or with one of a showstopper critical cofactor may have no startup at all.
 

Frickly

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Fredd

Active B12 Titration Methods

These methods can be applied to either active b12; adenosylb12 and methylb12. If a person is having a lot of startup reaction to mb12 then I would suggest starting with adb12. Either should be started on a base of the basic vitamins and minerals; A, D, C, E, B-complex that includes P-5-P and pantethine and without Cyanob12 (Jarrow B-Right, twice a day), methylfolate, magnesium, calcium, zinc (50mg) and Omega3 oils. These are so essential that they often go without saying or being taken. They are absolutely essential for healing and tissue formation. There are many other things that may be beneficial and aid healing tremendously and some critical cofactors that are essential but after the active b12s are started as they don’t work as well or at all when the b12 is short.


Fredd,

I started reading your info on b12 again today to try and figure out what to do as I am getting very ill again. I really appreciate all the good info. I am determined to get this b12 in my body. I have been taking all of the above supplements you mentioned for several months with the exception of P-5-P as this also made me ill when I took it for a short time.

I have been taking neurochondria by Thorne which has methyl b12, coq10,acytel L carnitine and a few others (this is what is making me ill). I quit taking it today and started taking a multi with some P-5-P (already ill). :( I have also been taking a b complex with cyanocobalamin b12. I am going to stop that and order the b right and methyl b12 you mentioned.

Should I just take my multi with the P-5-P until I stop having a reaction and then start the b right. When I am ok on b right then start very low on the methyl b12?

The b12 and b6 make me so ill I cannot function so I think you are right about starting very low. It's very bizzare that it makes all my cfs symptoms come back but intensified. Sorry you have to spell it out for me. I is so hard to figure this thing out on my own. I do hope, as Janis said, that this will open up a new door for me and help me to improve 100%.

Forgot to mention that the multi I am taking has 35mcg of methyl b12 as well as the p5p 35mg.

Thanks,
 

Jody

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The rule is: start slow, reduce if symptomatic -- don't be afraid to powder a pill and take a little pinch -- and build up slowly. Think like a farmer after a drought. When the ground is bone dry, a heavy rain runs off; a slow, gentle sprinkle gradually softens the soil and prepares it to receive a heavy rain.
Janis
Janis,

I think that is very good advice. It will apply to many things.
 

Jody

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I am getting very ill again.
Frickly,

I'm sorry to hear that.

Can you tell us what is worsening? How you're feeling? What symptoms you're getting?

I hope you are taking every opportunity to rest right now. I know that's hard with a houseful of wild animals. :)
 

Freddd

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Active B12 Titration Methods

These methods can be applied to either active b12; adenosylb12 and methylb12. If a person is having a lot of startup reaction to mb12 then I would suggest starting with adb12. Either should be started on a base of the basic vitamins and minerals; A, D, C, E, B-complex that includes P-5-P and pantethine and without Cyanob12 (Jarrow B-Right, twice a day), methylfolate, magnesium, calcium, zinc (50mg) and Omega3 oils. These are so essential that they often go without saying or being taken. They are absolutely essential for healing and tissue formation. There are many other things that may be beneficial and aid healing tremendously and some critical cofactors that are essential but after the active b12s are started as they don’t work as well or at all when the b12 is short.


Fredd,

I started reading your info on b12 again today to try and figure out what to do as I am getting very ill again. I really appreciate all the good info. I am determined to get this b12 in my body. I have been taking all of the above supplements you mentioned for several months with the exception of P-5-P as this also made me ill when I took it for a short time.

I have been taking neurochondria by Thorne which has methyl b12, coq10,acytel L carnitine and a few others (this is what is making me ill). I quit taking it today and started taking a multi with some P-5-P (already ill). :( I have also been taking a b complex with cyanocobalamin b12. I am going to stop that and order the b right and methyl b12 you mentioned.

Should I just take my multi with the P-5-P until I stop having a reaction and then start the b right. When I am ok on b right then start very low on the methyl b12?

The b12 and b6 make me so ill I cannot function so I think you are right about starting very low. It's very bizzare that it makes all my cfs symptoms come back but intensified. Sorry you have to spell it out for me. I is so hard to figure this thing out on my own. I do hope, as Janis said, that this will open up a new door for me and help me to improve 100%.

Forgot to mention that the multi I am taking has 35mcg of methyl b12 as well as the p5p 35mg.

Thanks,

Hi Frickly,

Something I didn't mention but comes up is CoQ10. I found it impossible to tolerate at a certain stage of startup. Before I started mb12 I had no problem and it had no effect. After Two years of healing and both b12s and b-complex twice a day, it had no discernable effect. However, after starting mb12 and the early stages of healing it gave me high blood pressure (190/110) and severe headaches and neck spasms.

The B-right has a modest amount of p-5-p in it, a coenzyme active form of b6. The doses in B-right are very modest and suitable for twice day dosing. its easy on the stomach with microencapsulation of the smelly stomach irritating factor. Also, I would leave the l-carntine out until after getting started on both b12s. It has it's own set of powerful startup effects in many people. Order in these things seems far more important than many people seem to acknowledge. As the adb12 is foundational to the carnitine I think it should be started first. Then The l-carntine can be added in as a separate item and you can determine which form works best for you. Personally I'm not in favor of a lot of these mixtures because of the way they combine things.

Also, the zinc needs to be titrated by many to avoid problems. It too can be very intense with these things. I don't know why these things can react in this way but sometimes they do. So a slow start adding certain things in order can be best. I tend to advise staying away from these premixes bercasue of the surprises in them.

I looked up neurochondria and it contains glutathione. As far as I can tell fronm experience is that the glutathione destroys the active b12 you are taking and throws you back into deficiency. You might be feeling the effects of the glutathione instead of active b12. I would suggest discontinuing it and starting simple. Start the basics; B-Right, mineral with at least calcium/magnesium and zinc preferably with trace minerals, A, D, E (I'm partial to Gamma E complex from NOW foods), C. See how that goes and add in the methylfolate. Then the adb12 then the methylb12. Titrate those with quarter tablets at a time, just starting one at a time and not adding the next at least until you have gone comforatably up to half a tablet. Start even smaller if that is what you need. Take all the vitamins specified here with a meal and without iron. The sublinguals should be taken later, about 2 hours after the meal when the other vitamins are starting to hit the blood. The glutathione intensified by CFS symptoms right back it existance after being gone for 5 years. Good luck.
 

Freddd

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Frickly,

I'm sorry to hear that.

Can you tell us what is worsening? How you're feeling? What symptoms you're getting?

I hope you are taking every opportunity to rest right now. I know that's hard with a houseful of wild animals. :)
Hi Jody,

I live with two little green aliens with limited vocabularies. One is 10 inches tall, an Amazon green yellow nape parrot, a large parrot and a monk parrot, a small parrot only about 5 inces tall when standing. Talk about wild animals, it sounds like a jungle here.
 

Frickly

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Fredd

Thanks for replying so quickly. I do agree that these combinations such as the neurochondria are not a good idea. This is why it has been so difficult to figure out what I am reacting to. I did not consider the coq10 because I took it for about a month a while back with no ill effects. I stopped because it was so expensive. The glutithione in the neurochondria could also be a problem. I take the glutithione/ATP injections every week and for a long time it made me feel horrible the following day but I seem to be doing better now. My doc told me today that my ATP is still not where it should be and my most recent blood test was consistent with chronic mono. Anyway, I'm going to take your advise and I will let you know how it goes. Too bad doctors know nothing about supplements. That would make my life much easier.

Thank you,
 

Frickly

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Jody

Frickly,

I'm sorry to hear that.

Can you tell us what is worsening? How you're feeling? What symptoms you're getting?

I hope you are taking every opportunity to rest right now. I know that's hard with a houseful of wild animals. :)
Thanks Jody,

My worst pain before I started antibiotics and glutithione/ATP injections was a burning pain in back of neck. This disapeared after starting treatment but comes back when I have a reaction to this supplement. I also have gotten a jittery, nervous feeling, nasea, dizzy, fever, chills, swollen lymph nodes, arthritis pain came back in hips and hands. Basically, all my old symptoms. Anyway, enough is enough. I'm taking Fredd's advice and going to back track a little. I am excited about the possibility of feeling better if I can just push through this little hurdle. I experienced this with antibiotics so know it can happen. Anyway, I appreciate your concern and i will let everyone know what happens.
 

Jody

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Yeah, do let us know.

Do you know if there was anything that precipitated this setback?

10 lb. weights wouldn't have anything to do with it, would they? :)
 

Frickly

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Ha...Ha....Ha....

No, :D It's not the 10lb weights but, wow, my arms did hurt for a few days. This setback is self imposed. If I stop the supplementation with the b12 then I feel much better.
 

Jody

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If you STOP the b12 you feel better.

It is a cockeyed world (at least the cfs world) isn't it.:rolleyes:
 

Freddd

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Active B12 Titration Methods

These methods can be applied to either active b12; adenosylb12 and methylb12. If a person is having a lot of startup reaction to mb12 then I would suggest starting with adb12. Either should be started on a base of the basic vitamins and minerals; A, D, C, E, B-complex that includes P-5-P and pantethine and without Cyanob12 (Jarrow B-Right, twice a day), methylfolate, magnesium, calcium, zinc (50mg) and Omega3 oils. These are so essential that they often go without saying or being taken. They are absolutely essential for healing and tissue formation. There are many other things that may be beneficial and aid healing tremendously and some critical cofactors that are essential but after the active b12s are started as they don’t work as well or at all when the b12 is short.


Fredd,

I started reading your info on b12 again today to try and figure out what to do as I am getting very ill again. I really appreciate all the good info. I am determined to get this b12 in my body. I have been taking all of the above supplements you mentioned for several months with the exception of P-5-P as this also made me ill when I took it for a short time.

I have been taking neurochondria by Thorne which has methyl b12, coq10,acytel L carnitine and a few others (this is what is making me ill). I quit taking it today and started taking a multi with some P-5-P (already ill). :( I have also been taking a b complex with cyanocobalamin b12. I am going to stop that and order the b right and methyl b12 you mentioned.

Should I just take my multi with the P-5-P until I stop having a reaction and then start the b right. When I am ok on b right then start very low on the methyl b12?

The b12 and b6 make me so ill I cannot function so I think you are right about starting very low. It's very bizzare that it makes all my cfs symptoms come back but intensified. Sorry you have to spell it out for me. I is so hard to figure this thing out on my own. I do hope, as Janis said, that this will open up a new door for me and help me to improve 100%.

Forgot to mention that the multi I am taking has 35mcg of methyl b12 as well as the p5p 35mg.

Thanks,

Hi Fricky,


Also, be sure to include omega3 fishoils in the basics.

The neurochondria has 1500mcg of methylb12. You say you are taking 35mcg additional methylb12 which is totally inconsequential compared to 1500mcg. I'm confused as to why you are taking another 35mcg. In any case it's important to get off the glutathione and onto the 5 star brands of both active b12s. Here is a change of viewpoint. You are very lucky to have all these reactions because now it will make homing in on what works much easier. The most difficult situations to solve are with those who give no feedback, who have no reactions of any kind. Every reaction is a clue, a signpost, for those who have the experience to interpret them. Then it becomes like debugging a computer program.

A Software Engineer, a Hardware Engineer and a Branch Manager were on their way to a meeting. They were driving down a steep mountain road when suddenly the brakes on their car failed. The car careened almost out of control down the road, bouncing off the crash barriers, until it miraculously ground to a halt scraping along the mountainside. The car’s occupants, shaken but unhurt, now had a problem: they were stuck halfway down a mountain in a car with no brakes. What were they to do?

I know,” said the Branch Manager, “Let’s have a meeting, propose a Vision, formulate a Mission Statement, define some Goals, and by a process of Continuous Improvement find a solution to the Critical Problems, and we can be on our way.

No, no,” said the Hardware Engineer, “That will take far too long, and besides, that method has never worked before. I’ve got my Swiss Army knife with me, and in no time at all I can strip down the car’s braking system, isolate the fault, fix it, and we can be on our way.

Well,” said the Software Engineer, “Before we do anything, I think we should push the car back up the road and see if it happens again.
 

Frickly

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Fredd

Sorry, let me clarify. I quit taking the neurochondria (1500methyl b12) and started taking a multivitamin that included (35mcg methyl b12). I did this just today and still, the multi with 35mcg made me very ill about 45 minutes after taking it.

Regarding the glutithione. I hear you...but am very concerned about stopping my injections as It was this and my antibiotics that turned a corner for me. You could very well be right but I am not ready to go there. I beleive my doctor has part of the answer but not the whole equation so I am filing this recommendation for later use.:)

Forgot to mention...I have been taking cod liver oil for many months.

Thanks,
 

Freddd

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Sorry, let me clarify. I quit taking the neurochondria (1500methyl b12) and started taking a multivitamin that included (35mcg methyl b12). I did this just today and still, the multi with 35mcg made me very ill about 45 minutes after taking it.

Regarding the glutithione. I hear you...but am very concerned about stopping my injections as It was this and my antibiotics that turned a corner for me. You could very well be right but I am not ready to go there. I beleive my doctor has part of the answer but not the whole equation so I am filing this recommendation for later use.:)

Forgot to mention...I have been taking cod liver oil for many months.

Thanks,

I am betting that 35mcg of mb12 taken orally can't possibly be doing anything of any signficance. The only way 35mcg would be perceptable, especially the small fraction actually absorbed, is if you are totally deficient. That would be the glutathione as there is no other way I know of to induce that depth of b12 deficiency if you have been taking 1500mcg a day. You don't have to decide to quit. Just decide to take a break and run a comparative trial and then decide based on how things work in a trial. I'm betting if you do things differently you could feel so much better in a month that you wouldn't want to go back to the injections. The glutathione for me and 100% of 8 others who tried it with active b12 (methylb12) was that the glutathione was an unmitigated disaster, no ifs, ands or buts about it. I hadn't ever had that kind of setback in 6 years, not even when taking a zero star brand or hydroxyb12. The glutathione neutralized all the methylb12 in my body throwing me into hard deficiency in less than 12 hours. It reversed the recovery of 6 months in 6 weeks by starting up neurological degeneration again much much faster than merely not taking any.

The choice of course is yours. Don't let fear control you and keep you sick. With your symptoms coming back hopefully it would be clear that something isn't working. Attributing it to methylb12 when what you are having are methylb12 deficiency symptoms doesn't make sense. Have a trial. Try somewthing different to reverse what is happening now. You can always go back to it. Maybe you have gotten all the good out of it that you can. If you took the multi with a meal it takes 2-3 hours to begin absorbing the b12.
 

Frickly

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Fredd

I don't like your answer. Can you try again? :D There is alot of fear involved as I am very afraid of going back to were I was. You have given me alot to think about and I appreciate all your advise.

Take care,
 

Freddd

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I don't like your answer. Can you try again? :D There is alot of fear involved as I am very afraid of going back to were I was. You have given me alot to think about and I appreciate all your advise.

Take care,
Hi Frickly,

I very much do understand fear and it’s role in all this. I spent my whole life spiraling down. In desperation back in 1980 I tried 100 desiccated liver tablets a day because I hate liver and there wasn't any other way to get real b12 then. I wasn't up to the Fear Factor treatment of the 1930s for Pernicious Anemia, half a gallon of raw liver puree daily. After about 6 months the "lights came on" for the first time in my life. Each time I got sick, or pain increased or I got stressed, and that included getting excited, the lights went out for 6 months. All in all I had about 8 months divided over several years with the lights on for the only times in my life. Each time they went off I felt like I was being punished and being cast back into hell. Just talking about it now is a very emotional experience for me and raises terrible fear of it happening again. Then they went off and I kept on declining until 2003, when the lights went back on and stayed on with methylb12. Now I understand why and have observed many hundreds of people have the same experience.

So fear is a very real thing. It changes the body biochemically generating stress hormones. Also, because of the way our neurology is plastic and adapts, fear can become wired in if it becomes too frequent or prolonged. It is exhausting. It causes bad judgment. Consider that a person could walk miles on a foot wide work platform on the ground and never have a bobble. Put that 20 feet off the ground and suddenly it’s too narrow to keep balance on. I’m resurfacing the roof of a house currently. It’s a two story house. Fear can make a person trip over their feet. Fear can cause the very thing we fear and try to avoid. Before starting the b12 and for 2 years after my leg would suddenly give and collapse. It had done that for years. It hasn’t done that in 4 years. If I let fear control me I wouldn’t do the roof. If I’m fearful enough it can make me clumsy in the worst of possible places.

I was a psychology major in college. While it’s not a side I always show I’m a philosopher now and that underlies all that do. It certainly affects how I approach things and many of my replies. I have a strong streak of scientific approach to things and apply information gathered and analyzed. In the past six years I had about 2 years of healing in 6 years because of the many setbacks I’ve had learning about how these things work, and don’t work. I’ve been fairly successful at helping people avoid most of the setbacks I have had. When something works 5% I try to find out why that isn’t 100%. I base what I say on what has worked for me and others under the exact circumstances in so far as is possible rather than somebody’s theory on how things ought to work. So in the case of the glutathione, the results had by people I correspond with who have tried it in conjunction with methylb12, 100% have had regression of symptoms to pretreatment forms and levels where as those who used it with hydroxycobalamin had no such thing though they also didn’t have the effects of large amounts of unbound mb12 in their blood to be reversed in the first place. You describe the same effects but attribute it to different causes in effect hiding what appears to be the genuine cause. This is where pushing that car back to the top of the mountain may apply. The effect, successful or unsuccessful needs to be repeatable and predictive of results and lead to successful trials from what is learned. I have suggested a trial of doing things differently always with the possibility to return to the previous methods. The risk is that your results will continue as they are currently, regressing with return of symptoms compared to the possibility of healing and recovery. If fear keeps you from changing what isn’t working for you, I don’t see how that will benefit you. One of the things I have found is that there is a very narrow corridor of success in healing these things. Most variations don’t work or don’t work well. Only a few things work. So with injected b12 for instance, something you are not doing, there are a number of variations that don’t work due to its fragility. There are amounts that don’t work for certain problems. There are types of injecting that work relatively better or worse. Then the basic and critical cofactors must be present for it to work. Just for something that would seem so straightforward there are more ways to go wrong than to go right. It’s like baking a cake or bread; the recipes are precise because there are lots of ways for things not to work out.

No matter how it works out for the individual, it’s all data that helps clarify the picture. Theories don’t have to be correct for the pragmatic practice to work. I received a lot of effective treatment from my chiropractor for certain things even though I don’t think highly of the 19th century theory behind it. Good luck and good health.