• 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, 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.

Thirst for MFolate, those that have ramped up

dannybex

Senior Member
Messages
3,566
Location
Seattle
@Johnmac, have you tried starting with say, methylcobalamin, for a week or two, and then adding one thing at a time?That method has worked for some on the message boards. They say it's easier then to determine what may be causing a problem or increasing negative symptoms.

And just to avoid the methyl-trapping, it makes sense to start w/making sure one has sufficient b12 in place before adding any folate. At least that's what many have mentioned.
 

Johnmac

Senior Member
Messages
758
Location
Cambodia
Thanks again @dannybex.

I did begin the Freddd protocol that way. Now after a crash I just re-start everything at once.

The thing is that there is quite a long build-up to my crashes. So by the time one happens, I am taking all 4 DQs.

Tho this time I'd gone off LCF, as its symptoms were so unpleasant. And I still crashed.

What is methyl trapping? I've seen the term used often, but never a definition.

And apologies to the ever-helpful @sregan for kinda hijacking the thread.
 
Last edited:

dannybex

Senior Member
Messages
3,566
Location
Seattle
My understanding is that methyl-trapping occurs if one doesn't have sufficient B12. But as to what exactly it means, I can never remember...

Here's a thread that might help:

http://forums.phoenixrising.me/index.php?threads/what-is-methyl-trapping.22007/

(I think Xera's explanation is correct.)

And here's a definition from wikipedia:

"Vitamin B12 is the only acceptor of methyl-THF, and this reaction produces methyl-B12 (methylcobalamin). There is also only one acceptor for methyl-B12, homocysteine, in a reaction catalyzed byhomocysteine methyltransferase. These reactions are of importance because a defect in homocysteine methyltransferase or a deficiency of B12 may lead to a so-called "methyl-trap" of THF, in which THF is converted to a reservoir of methyl-THF which thereafter has no way of being metabolized, and serves as a sink of THF that causes a subsequent deficiency in folate. Thus, a deficiency in B12 can generate a large pool of methyl-THF that is unable to undergo reactions and will mimic folate deficiency."
 

dannybex

Senior Member
Messages
3,566
Location
Seattle
My experience has been puzzling in that area as well. I get an increased rate of cell replacement on my skin, and it is good skin. In areas where there is deeper damage, like old acne scarring and such, there seems to be deeper cells formed pushing the damaged areas off leaving smooth skin in it's place. I've had areas of sun damaged skin get shed with nice new skin under it. I don't know how else to describe it. Something like you say perhaps.

Found this study that found "significantly large folate losses occur from skin sloughing in exfoliative dermatitis."

http://archinte.jamanetwork.com/article.aspx?articleid=575159
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I notice that the LCF version of my meltdown is characterised by anxiety, and the non-LCF version (3 DQs only) by depression/despair.

Hi Johnmac,

That could be a bingo. That appears to identify a different variation. That is one that requires a micro-titration with the Jarrow liquid l-carnitine. My suggestion would be to try a micro-titration starting at 100mcg in 3 divided doses. That is a difficult balance to achieve, between anxiety and depression/despair. To do that take 1 drop of the liquid and dilute in a small container 98 drops of water. Take 1 drop in enough water to swallow easily and completely on an empty stomach 30 minutes or more before food or 2 hours after, 3 times per day to even out the serum level. Refrigerate between uses and throw out at end of day. Then add a drop, the next day 2 drops and the next 3 drops to the original 3. So each three days one can double but when it starts to hit anxiety drop back to the previous dose and then increase only a drop a day as the anxiety retreats from the present dose. In my opinion this response can be feathered. This is at your risk entirely. It's a difficult balance but I have seen it work for people who have this response. It ends up being stable at normal once a day (usually once, sometimes 2 or 3) doses though it can take months to a year or more. Good luck.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Found this study that found "significantly large folate losses occur from skin sloughing in exfoliative dermatitis."

Hi Danny,

That leaves me out. I just plain don't and never did, have the symptoms of exfoliative dermatitis. Interesting idea though and may apply for some people, especially while folate deficient. What a double whammy! I had lots of skin problems with decades of deficiencies and the most near perfect skin of my life now with a functional vitamin balance.
 

Johnmac

Senior Member
Messages
758
Location
Cambodia
Hi Johnmac,

That could be a bingo. That appears to identify a different variation. That is one that requires a micro-titration with the Jarrow liquid l-carnitine. My suggestion would be to try a micro-titration starting at 100mcg in 3 divided doses. That is a difficult balance to achieve, between anxiety and depression/despair. To do that take 1 drop of the liquid and dilute in a small container 98 drops of water. Take 1 drop in enough water to swallow easily and completely on an empty stomach 30 minutes or more before food or 2 hours after, 3 times per day to even out the serum level. Refrigerate between uses and throw out at end of day. Then add a drop, the next day 2 drops and the next 3 drops to the original 3. So each three days one can double but when it starts to hit anxiety drop back to the previous dose and then increase only a drop a day as the anxiety retreats from the present dose. In my opinion this response can be feathered. This is at your risk entirely. It's a difficult balance but I have seen it work for people who have this response. It ends up being stable at normal once a day (usually once, sometimes 2 or 3) doses though it can take months to a year or more. Good luck.

Thanks @Freddd. I'll give it a shot. But a few clarifications if I may:

That appears to identify a different variation.

1. Different variation of what exactly?

That is one that requires a micro-titration with the Jarrow liquid l-carnitine.

2. That would be acetyl l-carnitine of course?

3. So I dilute 1 drop of ALCAR in 98 drops of water, then put one drop of that 1:98 dilution into a glass of water?

Then add a drop, the next day 2 drops and the next 3 drops to the original 3.

4. So Day One you have 3 drops in total; Day Two you have four drops in total; etc?

5. What does "feathered" mean?

6. Do I get any results in (say) the first month? or do I have to wait months to know it's working?

7. In a post yesterday (before this ALCAR bingo) you recommended trying (i) TMG, (ii) increasing mB12, and (iii) decreasing AdoCbl. Does that still apply?

Thanks & all the best...
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks @Freddd. I'll give it a shot. But a few clarifications if I may:

That appears to identify a different variation.

1. Different variation of what exactly?

That is one that requires a micro-titration with the Jarrow liquid l-carnitine.

2. That would be acetyl l-carnitine of course?

3. So I dilute 1 drop of ALCAR in 98 drops of water, then put one drop of that 1:98 dilution into a glass of water?

Then add a drop, the next day 2 drops and the next 3 drops to the original 3.

4. So Day One you have 3 drops in total; Day Two you have four drops in total; etc?

5. What does "feathered" mean?

6. Do I get any results in (say) the first month? or do I have to wait months to know it's working?

7. In a post yesterday (before this ALCAR bingo) you recommended trying (i) TMG, (ii) increasing mB12, and (iii) decreasing AdoCbl. Does that still apply?

Thanks & all the best...


Hi Johnmac,

The anxiety-depression/despair set of symptoms is a tip-off. That is a frequent variation of how people react. It usually happens when their AdoCbl-Carnitine end of things has been more deficient than the MeCbl-Metafolin side. Things are more hung up on the ATP side than the methylation side. The "variation" is on which part of the deadlock quartet is more affected. "Feathered", old language for nursing a balky engine to life by adjusting the throttle and choke where too much stops it and too little stops it. The happy medium varies and it takes effort to get a working balance. The Jarrow liquid carnitine is free-base and generally works for both ALCAR and LCF needing people. The carnitine takes effect quickly. One way to speed up the titration is each hour take a drop (1:98 drop). If that doesn't bring it up, the next day 2 drops each time. When you get to 3 drops of the 1:98 you can substitute 1 of the 1:32 drops for 3 of the previous. The anxiety appears on the uphill. increasing serum level, and the depression is on the drop down after peak. You may have a reaction at 200mcg or not until 20mg or who knows. That is the purpose of titration, to approach gently a startup point so as not to go uncomfortably fast and hard.
 

dannybex

Senior Member
Messages
3,566
Location
Seattle
Hi Danny,

That leaves me out. I just plain don't and never did, have the symptoms of exfoliative dermatitis. Interesting idea though and may apply for some people, especially while folate deficient. What a double whammy! I had lots of skin problems with decades of deficiencies and the most near perfect skin of my life now with a functional vitamin balance.
I don't have that specifically either, it just was interesting that high levels of folate were found in the shedded skin.
 

Johnmac

Senior Member
Messages
758
Location
Cambodia
Hi Johnmac,

The anxiety-depression/despair set of symptoms is a tip-off. That is a frequent variation of how people react. It usually happens when their AdoCbl-Carnitine end of things has been more deficient than the MeCbl-Metafolin side. Things are more hung up on the ATP side than the methylation side. The "variation" is on which part of the deadlock quartet is more affected. "Feathered", old language for nursing a balky engine to life by adjusting the throttle and choke where too much stops it and too little stops it. The happy medium varies and it takes effort to get a working balance. The Jarrow liquid carnitine is free-base and generally works for both ALCAR and LCF needing people. The carnitine takes effect quickly. One way to speed up the titration is each hour take a drop (1:98 drop). If that doesn't bring it up, the next day 2 drops each time. When you get to 3 drops of the 1:98 you can substitute 1 of the 1:32 drops for 3 of the previous. The anxiety appears on the uphill. increasing serum level, and the depression is on the drop down after peak. You may have a reaction at 200mcg or not until 20mg or who knows. That is the purpose of titration, to approach gently a startup point so as not to go uncomfortably fast and hard.

@Freddd thanks once again. That explanation makes sense.

1. That would be the Jarrow Formulas, Liquid Carnitine, Lemon-Lime Flavor, 16 fl oz (475 ml) ?

2. So I put 1 drop of the 1:98 dilution in a glass of water & drink?

3. Do I still try (i) TMG, (ii) increasing mB12, and (iii) decreasing AdoCbl ? Or just stick with the Jarrow for now?

4. Would carnitine/AdoCbl-needing people tend to have different deficiency symptoms from mB12/m-folate-needing people?

5. The last time I crashed I was taking no carnitine at all. So do my doses of mB12 (1.5mg/day), m-folate (1200mcg/day) & AdoCbl (5mg/week) need to be lowered?

Thanks again...
 
Last edited:

Johnmac

Senior Member
Messages
758
Location
Cambodia
Thanks once again @Freddd. That explanation makes sense.

1. That would be the Jarrow Formulas, Liquid Carnitine, Lemon-Lime Flavor, 16 fl oz (475 ml) ?

2. So I put 1 drop of the 1:98 dilution in a glass of water & drink?

3. Do I still try (i) TMG, (ii) increasing mB12, and (iii) decreasing AdoCbl ? Or just stick with the Jarrow for now?

4. Would carnitine/AdoCbl-needing people tend to have different deficiency symptoms from mB12/m-folate-needing people?

5. The last time I crashed I was taking no carnitine at all. So do my doses of mB12 (1.5mg/day), m-folate (1200mcg/day) & AdoCbl (5mg/week) need to be lowered?

I suppose another way of asking 5. is: If I crashed without any carnitine (the most activating DQ for me), why wouldn't I crash after adding it to the mix?

Thanks again...
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
HI Johnmac,

Leave other things as they are for the moment. Make it adding one change at a time. So titrate the that lemon flavored liquid carnitine. The 100mcg is a cautious amount. Since you have verified that you get the depression and the anxiety at opposite ends of the carnitine period in the body and that is a pattern I recognize with the solution being to find the balance point and titrate slowly up from there. This could take a year or more and as you get going you may find other areas that need adjustment. Leave the other possibilities until you have this item working as best it can before making the next adjustment.


SYMPTOMS LIST 01/03/2014 V 1.0

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 it 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 MeCbl 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.
 

Johnmac

Senior Member
Messages
758
Location
Cambodia
Thanks again @Freddd

With the DQs minus carnitine I get depression. With all 4 DQs I get anxiety.

My concern is that if I am crashing on the protocol minus carnitine, won't I just crash again once back on the protocol (whether I add carnitine or not)?

The crashes are pretty horrible: I'd want to avoid any I can.

All the best...
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks again @Freddd

With the DQs minus carnitine I get depression. With all 4 DQs I get anxiety.

My concern is that if I am crashing on the protocol minus carnitine, won't I just crash again once back on the protocol (whether I add carnitine or not)?

The crashes are pretty horrible: I'd want to avoid any I can.

All the best...

Hi Johnmac,

The despair/depression appear to be the CNS carnitine crash with the anxiety at the start of the increase in carnitine. In others I have talked with there was a balance point. The DQ has to be taken regularly and managed for steadiness and balance. The anxiety is high carnitine (relatively) and the depression is the low carnitine.
 

Johnmac

Senior Member
Messages
758
Location
Cambodia
@Freddd

Okay, I get it:

Not enough carnitine = depression. Too much carnitine = anxiety.

I'll give what you say a shot, & report back.

A 1:98 carnitine/water dilution; then put that in a glass of water. Titrate up as you suggest.

Thanks again....
 

sregan

Senior Member
Messages
703
Location
Southeast
Hate to interrupt... I'm am starting to hit a wall it seems. Something is changing since I started taking the small dose of ACBL per day. I'm feeling very wiped out especially toward the end of the day. I have been taking 1mg Solgar MFolate and 800mcg x 2 of Enz MB12 wth about 100 mg LCF 3 times per day plus cofactors. Was doing good for a few weeks. My inflammation that was making my hands ache is gone and my angular chelitis is almost gone. I'm strting to feel fatigued

I have been taking enough Potassium I believe. I have been getting sore calves when I need it. Have also been getting an odd twitching in my neck in the same spot for the last couple of weeks.

I am feeling and GI output is showing that my system is becoming more toxic (some diarrhea, feel much better after passing, maybe defined as "Uneasy digestive tract?")

So I'm looking at the possibility of (based on AHMO's Freddd document):
  1. Low Potassium
  2. Low MFolate
  3. ATP Activation
From AHMO's doc: "Adding AdoCbl might increase need (for MFolate) somewhat because it opens up other layers of healing"

Note that I had been taking a small amount of ACBL previously until I ramped up to 3mg mfolate per day. I took a small amount 3 Sundays ago with no MB12 that day, then took 30mg the following Sunday. Determined I needed MB12 also.

So maybe too much MB12 give me donut hole?

Or the addition of ACBL daily has done something?
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hate to interrupt... I'm am starting to hit a wall it seems. Something is changing since I started taking the small dose of ACBL per day. I'm feeling very wiped out especially toward the end of the day. I have been taking 1mg Solgar MFolate and 800mcg x 2 of Enz MB12 wth about 100 mg LCF 3 times per day plus cofactors. Was doing good for a few weeks. My inflammation that was making my hands ache is gone and my angular chelitis is almost gone. I'm strting to feel fatigued

I have been taking enough Potassium I believe. I have been getting sore calves when I need it. Have also been getting an odd twitching in my neck in the same spot for the last couple of weeks.

I am feeling and GI output is showing that my system is becoming more toxic (some diarrhea, feel much better after passing, maybe defined as "Uneasy digestive tract?")

So I'm looking at the possibility of (based on AHMO's Freddd document):
  1. Low Potassium
  2. Low MFolate
  3. ATP Activation
From AHMO's doc: "Adding AdoCbl might increase need (for MFolate) somewhat because it opens up other layers of healing"

Note that I had been taking a small amount of ACBL previously until I ramped up to 3mg mfolate per day. I took a small amount 3 Sundays ago with no MB12 that day, then took 30mg the following Sunday. Determined I needed MB12 also.

So maybe too much MB12 give me donut hole?

Or the addition of ACBL daily has done something?

Hi Sregan,

For me and others I have talked with extensively, doses above maybe 20mg of LCF a day can be given in a single dose in the morning. The 3 times per day is for microtitration of like 100 MCG (micrograms) because otherwise too many effects are from uneven serum levels MeCbl usually doesn't make a donut hole. However, LCF (with AdoCbl) can definitely increase the need for folate as it can be a massive turn on of healing in all the muscles of the body at the same time. It also appears to turn on mitochondrial proliferation as the first step in muscle healing.

The fasciculations (benign) happen as a sort of "noise" in the nerves. Sometimes it isn't benign, as in a lead up to ALS. If benign it can happen as nerves are deteriorating or going through the same stage while improving. Did you used to have fasciculations for some period and then they stopped?

Slowed digestion, even paralyzed gut, can be caused by low potassium.
 

sregan

Senior Member
Messages
703
Location
Southeast
Hi Sregan,

For me and others I have talked with extensively, doses above maybe 20mg of LCF a day can be given in a single dose in the morning. The 3 times per day is for microtitration of like 100 MCG (micrograms) because otherwise too many effects are from uneven serum levels

Ok, sounds good! Thank you for that clarification.

MeCbl usually doesn't make a donut hole. However, LCF (with AdoCbl) can definitely increase the need for folate as it can be a massive turn on of healing in all the muscles of the body at the same time. It also appears to turn on mitochondrial proliferation as the first step in muscle healing.

I must have misunderstood. I have been under the impression that one could take as much MB12 as one wanted without causing any issues. From the quote below Seemed that too much MB12 might cause Donut Hole. I think it's a quote of yours. The bold sentence is what I'm referring to...

"that is a problem with folic and folinic acid is that one never knows what the result means, it can mean that it is working or not working, depending upon the person’s own response and their MeCbl content. Keeping methylfolate “below” MeCbl amounts will cause endless donut hole paradoxical folate deficiency. There is almost no relationship between amount of MeCbl and amount of Methylfolate that might be needed.""

The fasciculations (benign) happen as a sort of "noise" in the nerves. Sometimes it isn't benign, as in a lead up to ALS. If benign it can happen as nerves are deteriorating or going through the same stage while improving. Did you used to have fasciculations for some period and then they stopped?

No not really. I'm not sure how much degredation I might have in that area. After 12 years of CFS I'm still in pretty good physical shape.

Note: I've been sucking on some extra Mfolate today and not as much MB12. Feeling better at the moment.

UPDATE: Slept pretty good and feeling somewhat better today. Oddly not much if anything in the area of potassium deficiency symptoms today and I barely took anything yesterday. I'm gonna bump to to 6mg Mfolate per day and try to taper my MB12 consumption a little.
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Ok, sounds good! Thank you for that clarification.



I must have misunderstood. I have been under the impression that one could take as much MB12 as one wanted without causing any issues. From the quote below Seemed that too much MB12 might cause Donut Hole. I think it's a quote of yours. The bold sentence is what I'm referring to...

"that is a problem with folic and folinic acid is that one never knows what the result means, it can mean that it is working or not working, depending upon the person’s own response and their MeCbl content. Keeping methylfolate “below” MeCbl amounts will cause endless donut hole paradoxical folate deficiency. There is almost no relationship between amount of MeCbl and amount of Methylfolate that might be needed.""



No not really. I'm not sure how much degredation I might have in that area. After 12 years of CFS I'm still in pretty good physical shape.

Note: I've been sucking on some extra Mfolate today and not as much MB12. Feeling better at the moment.


Hi Sregan,

Perhaps my wording wasn't the best. Let me try again. It's that amount from a 1000mcg 5 star MeCbl sublingual tablet with somewhere between 10% and 33% of the nominal dose absorbed and at least that much AdoCbl at a different time, that when the needed cofactors are present, is sufficient to start about 80% of maximum healing with some amount of l-methylfolate (Metafolin) that amount of MeCbl/AdoCbl is sufficient to start most all "internal triage layers" except neurological in many people. Increasing to 10mg of MeCbl, might only increase healing the last 20% or so and still not be enough for neurological healing. It normally doesn't appear to make any noticeable difference in folate need and usually only a little potassium. However, if enough folate wasn't taken in the first place just continuing the B12s is enough to go into a folate donut hole. That is pretty much irrespective of the B12 amounts.

I hope I said it better. Reading it myself it doesn't make sense. I would have included a few more words. Who knows. Now I know where that comes from.

One question, with the lack of activity how much has your muscle system decreased? What neurological symptoms have you had.
 

sregan

Senior Member
Messages
703
Location
Southeast
Hi Sregan,

Perhaps my wording wasn't the best. Let me try again. It's that amount from a 1000mcg 5 star MeCbl sublingual tablet with somewhere between 10% and 33% of the nominal dose absorbed and at least that much AdoCbl at a different time, that when the needed cofactors are present, is sufficient to start about 80% of maximum healing with some amount of l-methylfolate (Metafolin) that amount of MeCbl/AdoCbl is sufficient to start most all "internal triage layers" except neurological in many people. Increasing to 10mg of MeCbl, might only increase healing the last 20% or so and still not be enough for neurological healing. It normally doesn't appear to make any noticeable difference in folate need and usually only a little potassium. However, if enough folate wasn't taken in the first place just continuing the B12s is enough to go into a folate donut hole. That is pretty much irrespective of the B12 amounts.

Freddd, thank you.. If I've got it right then you're saying that not as much MB12 is needed as some of us are thinking. (However, in those without MTRR and MTR problems that the B12 is recycling at the proper rate.)

Also that if taking MB12 AND AB12 (possibly LCF?) one might need to up the folate or possibly deal with the Donut Hole. I believe people have taken large doses of just MB12 (injection or otherwise) and not dealt with such issues. So maybe it's due to the AB12/LCF?

One question, with the lack of activity how much has your muscle system decreased? What neurological symptoms have you had.

:thumbdown: I said "after 12 years of CFS I'm still in pretty good physical shape." Maybe you misread that. If you're assuming lack of activity because of CFS that's not the case for me so much. I have stayed fairly muscular and been able to do the gym 2 times per week and was running bleachers on the weekend (don't now because it's too cold mostly).

My mental issues lately are mostly some foggyness, introversion and mood instability. Had anxiety for a long time but not so much lately. Also need to note that the mood issues mostly resolved when I was on strict Paleo.
 
Back