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Folate Issues & Methylation

maddietod

Senior Member
Messages
2,859
This is a thread for people figuring out issues with folates while on methylation protocols.

2 weeks ago, I cut out all supplements with folates (other than metafolin), all fruits, and all vegetables, to see what would happen. Overnight my brain came back on-line. I am now experimenting with:

1. How much natural folate I can tolerate, from which sources. Are nuts a problem? Are leafy greens worse than an equal amount of folate from, say, carrots? Can I tolerate more by pre-loading with metafolin?

2. Since I'm now unable to tolerate parts of the Simplified Methylation Protocol, does this mean I have to switch to the Active one? What happens if I switch out the cofactors but keep using hydroxy b12? This might prevent the big startup problems, and the potassium issues. (Note, there is mb12 in my Douglas Labs B-Complex.)

3. How long do I stick with one level of supplementation before adding the next piece?

4. I'd like to share stories...what symptoms changed, supplement reactions, dosage experiments, etc.


I use this site for nutritional information. Go to "tools" on the left, >nutrient search, >foods lowest in [insert 'folate'], > within [insert 'vegetables' or 'fruits' etc.]. Or just insert a food in the search box.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
This is a thread for people figuring out issues with folates while on methylation protocols.

2 weeks ago, I cut out all supplements with folates (other than metafolin), all fruits, and all vegetables, to see what would happen. Overnight my brain came back on-line. I am now experimenting with:

1. How much natural folate I can tolerate, from which sources. Are nuts a problem? Are leafy greens worse than an equal amount of folate from, say, carrots? Can I tolerate more by pre-loading with metafolin?

2. Since I'm now unable to tolerate parts of the Simplified Methylation Protocol, does this mean I have to switch to the Active one? What happens if I switch out the cofactors but keep using hydroxy b12? This might prevent the big startup problems, and the potassium issues. (Note, there is mb12 in my Douglas Labs B-Complex.)

3. How long do I stick with one level of supplementation before adding the next piece?

4. I'd like to share stories...what symptoms changed, supplement reactions, dosage experiments, etc.


I use this site for nutritional information. Go to "tools" on the left, >nutrient search, >foods lowest in [insert 'folate'], > within [insert 'vegetables' or 'fruits' etc.]. Or just insert a food in the search box.


Hi Madie,

I find that taking 3200mcg with each meal is at least equal to taking a 1600mcg preload and 1600mcg with meal. I find the full active protcol to be massively more effective, both as to the forms of mb12/adb12 and by having all the necessary cofactors without having to play hunt the elephant with a BB gun.

3. How long do I stick with one level of supplementation before adding the next piece?


I would add ALL the basic vitamins and minerals, they are all essential for healing to occur. Then as I see what things are not healing add critical cofactors. However, the basic trinity, mb12,adb12, metafolin are all essential. Working up toi 15-20mg sulblingual per day of mb12 will heal the most. The faster you do that the faster the startup fades. Adb12 has minior startup for a few days if one is taking the even 3mg a day. It takes me 12,800mcg of Metafolin to not be deficienct while eating veggies.
1. How much natural folate I can tolerate, from which sources. Are nuts a problem? Are leafy greens worse than an equal amount of folate from, say, carrots? Can I tolerate more by pre-loading with metafolin?


I think that the folate from all the various veggies is pretty much a problem. The qunatity is the key. I am trying to be able to eat a sizable salad, Roamain/leaf lettaces, carrots, cucumbers, tomatoes etc., no pickled stuff, no dressing, and a serving of cooked veggies like chard or other such, carrots, winter squash, green beans, spinich, etc. I also like onions in various ways at the same meal, potatoes, etc. I eat about 6 oz of meat and all the rest is veggies at dinner. My early in day meal is leftovers or eggs and toast or whatever, it varies a lot. I completely avoid "enriched" products. So I eat old fashioned oatmeal but not prepared "enriched" cereals and often include fruit for either or both meals.

Since I'm now unable to tolerate parts of the Simplified Methylation Protocol,

What does that mean?
 

maddietod

Senior Member
Messages
2,859
I can't tolerate the Yasko multi, which has folic acid in it, and obviously I can't take the additional 200mg of folic acid daily. So I can't do the SMP as written.

I understand that your active protocol works as a synergistic whole, and I know I'm messing with it. But given that my symptoms are relatively mild and not as widespread as yours, I'm moving in slowly. I felt 80% better just from dropping all folic/folinic acid while taking the B-Complex. Since I'm not eating a "healthy diet" while I figure this out, I'm taking all of your recommended essential supplements except for the adb12 and mb12. Because for my purposes, it's useful to add them later, once I see how far this takes me.

My current experiment is adding back in 2 drops of hydroxy b12 daily, because I have it already, and its action is gentle. I think my next experiment will be adding either SAM-e or L-Carnitine Fumarate, to see if I can shift the PEM and tight neck muscles.
 

Rosebud Dairy

Senior Member
Messages
167
Here are some notes from the CONFIRMED FOLATE DEFICIENCIES THREAD that are probably better off here anyway.

TRYING to confirm folate deficiencies -- But I am having trouble excluding foods that may have gotten into my gut AFTER the 3 hour half-life of my methylfolate.
skin splitting may be a symptom of folate deficiency for me.
Potassium drops may also be symptomatic, but this can be related to blood loss, too.

Now, I am looking back at those inadvertent exposures, and seeing the fatigue, muscle pain, and brain fog that followed! WOW!


Apparently, this patient has trouble reading her own nutrition labels -
kombucha - some type of folate
orange juice- some form of folate
fresh pineapple - some folate, but small

I had some "breakthrough" neuropathies while on-protocol, and could not figure it out.

But, for me, I am NOT sure if 3200 mcg before a meal gives me enough saving grace to compete with any folic/folinic I may consume during the meal OR
maybe I am still experiencing folic/folinic washout from the last inadvertent exposure.

Maddietodd, our symptoms are SO similar!!

Back to the drawing board on what foods I may be over-consuming, and to look again at why my special diet may have worked well.

___________________________________________

Protocol notes: (went back to FAP since that is what I had in the drawer, have never done SMP- have never done hydroxy, always did jarrow)
I am on full active protocol including:
jarrow mb12
enzymatic therapies mb12
dibencozide without folic added
methylfolate (Solgar)
potassium
fish oil (EPA, DHA)
high dose A&D fermented cod liver oil
high dose butter oil
NOW minerals (just sometimes)
melatonin (to keep away the vivid horrific nightmares)

working on adding in:
CoQ10
r-ALA

plus potassium - which I was trying to get in foods until I almost had a potassium crash a couple of days ago from blood loss, and my body just could not keep up with the potassium demand. As soon as I got potassium on board, I was feeling better. For now, I add potassium with the "low sodium" salt. cheap and readily available, easy to measure, easy to take with in the car for recent potassium emergencies from blood loss or over-exposure.

I am too afraid of raging diarrhea to eat a "healthy" diet for now, but I actually eat a lot of high fat nutrient dense foods, one of which is soaked and slow toasted pecans. IF my diet is careful, I think I can continue them, but will check them against that link up there.

I am looking at SAM-e and L-Carn. Fum., too.

I was on full active protocol a couple years ago (with folic), quit for a while, until I had a confirmed single C677T, then started back up on full protocol when my doc did not even not that methylfolate could unmask a b12 deficiency. some heart attack deaths in family, stroke related problems, ADHD, ADD, depression ran through the family too, etc.

I am also doing hyperbaric oxygen therapy for other reasons, but can get into that later.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I can't tolerate the Yasko multi, which has folic acid in it, and obviously I can't take the additional 200mg of folic acid daily. So I can't do the SMP as written.

I understand that your active protocol works as a synergistic whole, and I know I'm messing with it. But given that my symptoms are relatively mild and not as widespread as yours, I'm moving in slowly. I felt 80% better just from dropping all folic/folinic acid while taking the B-Complex. Since I'm not eating a "healthy diet" while I figure this out, I'm taking all of your recommended essential supplements except for the adb12 and mb12. Because for my purposes, it's useful to add them later, once I see how far this takes me.

My current experiment is adding back in 2 drops of hydroxy b12 daily, because I have it already, and its action is gentle. I think my next experiment will be adding either SAM-e or L-Carnitine Fumarate, to see if I can shift the PEM and tight neck muscles.

HI Madie,

It took 3 years of mb12, 2.25 years of adb12 and a year or so of l-cantitine fumarate to heal the muscles in my neck so they could loosen up. Further it didn't happen until I had gone to 5mg a day of injected mb12 for a year. In the symptoms list on active b12 basics there are 12 specific muscle pains descriptions. They cpover the spectrum of what is required to relieve them including methylfolate for a couple of them. That info is not posted, not perfected enough.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Newsmax has picked up in folate deficiency.


http://www.newsmax.com/FastFeatures/signs-of-folate-deficiency/2011/02/18/id/386663
Deficiency of folate may result in immense bleeding of the gastrointestinal tract as well as other areas. Immediate medical advice should be taken if there is any bleeding in the body as this is a symptom of the chronic stages of folate deficiency.

In adults, one of the main folate deficiency symptoms could be anemia. Anemia is caused due to the decrease of a compound called hemoglobin in the blood. Some of the symptoms of anemia include shortness of breath, palpitations, fatigue, and pale skin.


Read more on Newsmax.com: Top 5 Signs of Folate Deficiency
Important: Do You Support Pres. Obama's Re-Election? Vote Here Now!
Some of the early symptoms of folate deficiency include fatigue, headache, palpitations, diarrhea, as well as difficulty concentrating.

People with a folate deficiency will show obvious physical signs like weight loss and loss of appetite. Folate deficiency is also known to cause sore tongue, headache, and irritability. Several behavioral disorders and depression might also be seen in the person with folate deficiency, as the nutrient plays a key role in maintaining the health of the central nervous system.
 

maddietod

Senior Member
Messages
2,859
Post 24, Active B12 sticky:

SYMPTOMS, SIGNS, CHARACTERISTICS OF METHYB12, ADENOSYLB12, METHYLFOLATE and limited cofactors, CNS and body deficiencies
Version 2.0 01/21/2012

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
dry mouth
excessive thirst
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)

burning muscle pain
accumulating muscle pains following exertion
sore muscles throughout body
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, stiff muscles, especially legs and arms
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
Widespread muscle pain responding to NSAID
Bursitis
Joint pain
Pain in weight bearing joints
morning joint stiffness


sick stomach
nausea
stomach not emptying
bloating
frequent vomiting
acid regurgitation
dyspepsia
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 - beyond lactose intolerance
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bullimia
weight loss
weight gain

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
low testosterone
erectile disfunction
low sperm count
poor sperm motility
Poor sperm quality
no sperm


WOMEN
low testosterone
low estrogen
post partum depression
post partum psychosis
False positive pap smears
menstrual symptoms
Frequent miscarriage
PMS
Chronic yeast infections
onset of menopause - unexpected

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)
Hasimoto's Thyroiditis, affected during active phase, appears to be deficiency result

High homocysteine
High urinary MMA

dizziness - even unable to walk
vertigo

Confusion
Disorientation
Difficulty in word finding
irritable
depression
SAD - Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
Difficulty assimilating new information
Reduced task completion
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
inappropriate anger
rage
psychosis, including many of the most florid psychosis seen in literature, megoblastic madness
Alzheimer's
delirium
dementia
paranoia
delusions
hallucinations - multisensory
anxiety or tension
nervousness
mania
panic attacks
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



mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
severe abnormal muscle fatigue up to and including apparent paralysis leading to death
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
taste hallucinations
smell hallucinations
sound hallucinations
visual hallucinations
metallic 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 in 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 atophy
centrocecal scotomata
hypersensitivity/intolerance to bright light
Slow to adapt to night vision
Night blindness
tearing
redness of eyes
Age Related Macular Degneration
Optic neuritis
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
always feeling cold
low body temperature
intolerance to loud sounds
intolerance to multiple sounds

Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
neural tube defect
mother of child with neural tube defect
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 anywhere in body - tingling, pins and needles, etc
paresthesias in one left foot only
paresthesias in one right foot only
paresthesias in one left leg only
paresthesias in one right leg only
paresthesias in one left hand only
paresthesias in one right hand only
paresthesias in one left arm only
paresthesias in one right arm only
paresthesias in both feet - cobwebs, hairs etc
paresthesias in both feet - burning, cold, wet, etc
paresthesias in both feet - tingling,painnful tingling, etc
paresthesias in both feet - pain - mild to seveere or acute, shallow to deep, etc
paresthesias in both feet - numbness in skin, etc
paresthesias in both feet - numbness in muscles, etc
paresthesias in both legs - cobwebs, hairs etc
paresthesias in both legs- burning, cold, wet, etc
paresthesias in both legs - tingling,painnful tingling, etc
paresthesias in both feet - pain - mild to seveere or acute, shallow to deep, etc
paresthesias in both legs- numbness in skin, etc
paresthesias in both legs - numbness in muscles, 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 1 of 2 most common abnormality (or vibration sense)
Loss of vibration sense is 1 of 2 most common abnormality (or position sense)
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
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
trembling
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
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
sudden "ice pick" pain
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
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
drowsy

suspicious
apathetic
rapid and unpredictable emotional changes
limbs feel stiff


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 > 93 first warning,
MCV > 97 alert
MCV > 100 outright macrocytosis
MCV > 105 urgently needs treatment, severe problem






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 disfunction, low count
white cell changes, low count
hypersegmented 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
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 -angular cheilitis
Hyperhidrosis - excessive sweating

Bariatric surgery
Dilantin 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
Intestinal parasites
Intestinal bacterial overgrowrth
Low CSF cobalamin
Elevated CSF MMA
Elevated CSF Hcy
Low blood serum level
Elevated uMMA
Elevated blood serum Hcy


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 hypnopompic state transitioning from sleep
Prolonged hypnagogic state transitioning to sleep
Sleep paralysis
seizures
coma
nosebleeds
FREQUENT DIAGNOSES OR OTHER PROVIDER BEHAVIOR

FMS
CFS
ME
ED
IBS
Sub-acute combined degeneration
Low Testosterone
Fertility Problems, male and female
Sleep Disorders
Neural Tube Defects
Peripheral Neuropathy
Polyneuropathy
Autonomic neuropathy
Conversion Disorder
Hypochondria
"TOO many symptoms to be believable"
Liar
Alcoholic - non-drinker or genuine light drinker
Removed from Practice for knowing to much
Its All In Your Head - IAIYH
Removed from practice for insisting that there is REALLY something wrong instead of IAIYH
Alzheimer's
 

Rosebud Dairy

Senior Member
Messages
167
@ Madie

Seeing that list you just posted is bringing tears to my eyes.

WOW.

The improvements I get on FAP while also being careful of my metafolin dose timing and watching potassium!

The main two lingering symptoms I'd love to see gone are:
brain fog (this is improving, no doubt)
post exercise fatigue lasting up to a week (in my own mind, a milestone or watermark symptom)

_______________________________________

I used to look at that list a few years ago, and would wonder if any of my problems could even improve, much less go away.

_____________________________________
 

maddietod

Senior Member
Messages
2,859
Hi Madie,

I find that taking 3200mcg with each meal is at least equal to taking a 1600mcg preload and 1600mcg with meal. I find the full active protcol to be massively more effective, both as to the forms of mb12/adb12 and by having all the necessary cofactors without having to play hunt the elephant with a BB gun.

3. How long do I stick with one level of supplementation before adding the next piece?


I would add ALL the basic vitamins and minerals, they are all essential for healing to occur. Then as I see what things are not healing add critical cofactors. However, the basic trinity, mb12,adb12, metafolin are all essential. Working up toi 15-20mg sulblingual per day of mb12 will heal the most. The faster you do that the faster the startup fades. Adb12 has minior startup for a few days if one is taking the even 3mg a day. It takes me 12,800mcg of Metafolin to not be deficienct while eating veggies.
1. How much natural folate I can tolerate, from which sources. Are nuts a problem? Are leafy greens worse than an equal amount of folate from, say, carrots? Can I tolerate more by pre-loading with metafolin?


I think that the folate from all the various veggies is pretty much a problem. The qunatity is the key. I am trying to be able to eat a sizable salad, Roamain/leaf lettaces, carrots, cucumbers, tomatoes etc., no pickled stuff, no dressing, and a serving of cooked veggies like chard or other such, carrots, winter squash, green beans, spinich, etc. I also like onions in various ways at the same meal, potatoes, etc. I eat about 6 oz of meat and all the rest is veggies at dinner. My early in day meal is leftovers or eggs and toast or whatever, it varies a lot. I completely avoid "enriched" products. So I eat old fashioned oatmeal but not prepared "enriched" cereals and often include fruit for either or both meals.

Since I'm now unable to tolerate parts of the Simplified Methylation Protocol,

What does that mean?

Hi, Freddd,

I will try taking the Solgar with veggie meals in increasing multiples of 800mcg. Your last paragraph implies that you don't have problems with other sources of folates, like fruit and nuts. Do I understand this correctly? I did have some apple and some grapes a few days ago, and nothing happened.

You also mention toast; if you eat wheat bread, what safe brand(s) have you found? If you're GF, are all GF breads safe if they don't say "enriched"? I'm specifically thinking of Udi's and Rudy's, available pretty widely in the US.

As to elephants and BB guns, I'm thinking that my problem might be singluar (folates), and best suited to delicate surgery. I might "only" have a folate issue that took 35 years to create problems, and then progressed remarkably slowly over 25 years as other systems got knocked out. My hypothesis ATM is that this inability to properly use folates has caused the methylation problems and all the other spin-offs so often discussed here. The most straightforward way to test this is to directly address the folate problem without adding large amounts of B12s, and see what happens.

I could get a big bomb and blast everything all at once, but it's possible that I would create new problems. I'm improving, and my only "start-up" issues were a few days of horrible sleep and 2 headaches. As long as I'm not back-sliding, I can afford to take my time and move step-by-step.

My worst symptoms have always been cognitive. Foggy, no memory, no motivation, can't process information, can't learn new things, can't be around people. My physical stamina is somewhat limited, and I get PEM, but the brain stuff is what keeps me at home. So it's pretty amazing that my brain's coming back, and that I had 10 people over on Sunday and had a blast. I also notice that the psoriasis that I've been scratching from earliest childhood is almost gone.
 

maddietod

Senior Member
Messages
2,859
@ Madie

Seeing that list you just posted is bringing tears to my eyes.

WOW.

The improvements I get on FAP while also being careful of my metafolin dose timing and watching potassium!

The main two lingering symptoms I'd love to see gone are:
brain fog (this is improving, no doubt)
post exercise fatigue lasting up to a week (in my own mind, a milestone or watermark symptom)

_______________________________________

I used to look at that list a few years ago, and would wonder if any of my problems could even improve, much less go away.

_____________________________________

I keep a diary that includes a log of symptoms so I can clearly see how far I've come. I love when I look back and see one I've forgotten about!

I agree about the PEM. Last year I went to a gym 3x a week doing a resistance circuit - low reps, low weights - just hoping to build some muscle. Well, after 3 months I was at the same reps, same weights, and suddenly one day I didn't want to go any more. That was the start of a slide that lasted until April, when I started the SMP. I'm going to try again, and see if the L-Carnitine makes a difference.
 

adreno

PR activist
Messages
4,841
I keep a diary that includes a log of symptoms so I can clearly see how far I've come. I love when I look back and see one I've forgotten about!

I agree about the PEM. Last year I went to a gym 3x a week doing a resistance circuit - low reps, low weights - just hoping to build some muscle. Well, after 3 months I was at the same reps, same weights, and suddenly one day I didn't want to go any more. That was the start of a slide that lasted until April, when I started the SMP. I'm going to try again, and see if the L-Carnitine makes a difference.

It might be that you need longer time to recuperate between workouts. 3x a week is fine for healthy people, but I suspect you need more than the standard 48 hours of recovery. I find that my maximum is 2x a week. I'm simply flattened for 2-3 days after a workout.

You might also try an increased potassium intake after a workout. After my last workout I was feeling terrible, but I revovered much more quickly by increasing my potassium intake. I'm going to be testing this theory in the coming time, but I am quite optimistic about it.

Also, if you do resistance training you're gonna need lots of high quality protein, or you'll only be breaking down your muscles, instead of building them.

Finally, I find that adb12 helps tremendously with working out, much more than the other supplements. You really need all the ATP and mitochondrial power you can get.
 

maddietod

Senior Member
Messages
2,859
Thanks, Adreno. I eat a very high protein diet. I haven't started the "workouts" yet. I can't really call them workouts, because I don't try to break a sweat or feel a burn. I'm a slow-and-steady kind of person. I've been doing far-infrared saunas for a few months now, and my naturopath 'prescribed' Hammer 'Endurolytes', taken 2 every hour for 3 hours, after the sauna. I figure I'll do the machines first, then the sauna, and then take the pills. I will follow your advice, and start with 2 sessions per week (instead of the 3x I do the sauna).

Please keep me posted about your potassium experiments. I'm following Freddd's advice about that - I keep it beside my bed, with water.

The Endurolytes have, in each pill:

Sodium (Chloride) 40mg
(Sodium) Chloride 60mg
Calcium (Chelate) 50mg
Magnesium (Chelate) 25mg
Potassium (Chelate) 25mg
B-6 (Pyridoxide HCL) 6.6mg
Manganese (Chelate) 1.6mg
L-Tyrosine 50mg
 

Freddd

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

Which of these do you have?


Post 24, Active B12 sticky:

SYMPTOMS, SIGNS, CHARACTERISTICS OF METHYB12, ADENOSYLB12, METHYLFOLATE and limited cofactors, CNS and body deficiencies
Version 2.0 01/21/2012

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
dry mouth
excessive thirst
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)

burning muscle pain
accumulating muscle pains following exertion
sore muscles throughout body
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, stiff muscles, especially legs and arms
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
Widespread muscle pain responding to NSAID
Bursitis
Joint pain
Pain in weight bearing joints
morning joint stiffness


sick stomach
nausea
stomach not emptying
bloating
frequent vomiting
acid regurgitation
dyspepsia
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 - beyond lactose intolerance
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bullimia
weight loss
weight gain

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
low testosterone
erectile disfunction
low sperm count
poor sperm motility
Poor sperm quality
no sperm


WOMEN
low testosterone
low estrogen
post partum depression
post partum psychosis
False positive pap smears
menstrual symptoms
Frequent miscarriage
PMS
Chronic yeast infections
onset of menopause - unexpected

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)
Hasimoto's Thyroiditis, affected during active phase, appears to be deficiency result

High homocysteine
High urinary MMA

dizziness - even unable to walk
vertigo

Confusion
Disorientation
Difficulty in word finding
irritable
depression
SAD - Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
Difficulty assimilating new information
Reduced task completion
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
inappropriate anger
rage
psychosis, including many of the most florid psychosis seen in literature, megoblastic madness
Alzheimer's
delirium
dementia
paranoia
delusions
hallucinations - multisensory
anxiety or tension
nervousness
mania
panic attacks
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



mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
severe abnormal muscle fatigue up to and including apparent paralysis leading to death
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
taste hallucinations
smell hallucinations
sound hallucinations
visual hallucinations
metallic 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 in 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 atophy
centrocecal scotomata
hypersensitivity/intolerance to bright light
Slow to adapt to night vision
Night blindness
tearing
redness of eyes
Age Related Macular Degneration
Optic neuritis
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
always feeling cold
low body temperature
intolerance to loud sounds
intolerance to multiple sounds

Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
neural tube defect
mother of child with neural tube defect
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 anywhere in body - tingling, pins and needles, etc
paresthesias in one left foot only
paresthesias in one right foot only
paresthesias in one left leg only
paresthesias in one right leg only
paresthesias in one left hand only
paresthesias in one right hand only
paresthesias in one left arm only
paresthesias in one right arm only
paresthesias in both feet - cobwebs, hairs etc
paresthesias in both feet - burning, cold, wet, etc
paresthesias in both feet - tingling,painnful tingling, etc
paresthesias in both feet - pain - mild to seveere or acute, shallow to deep, etc
paresthesias in both feet - numbness in skin, etc
paresthesias in both feet - numbness in muscles, etc
paresthesias in both legs - cobwebs, hairs etc
paresthesias in both legs- burning, cold, wet, etc
paresthesias in both legs - tingling,painnful tingling, etc
paresthesias in both feet - pain - mild to seveere or acute, shallow to deep, etc
paresthesias in both legs- numbness in skin, etc
paresthesias in both legs - numbness in muscles, 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 1 of 2 most common abnormality (or vibration sense)
Loss of vibration sense is 1 of 2 most common abnormality (or position sense)
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
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
trembling
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
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
sudden "ice pick" pain
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
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
drowsy

suspicious
apathetic
rapid and unpredictable emotional changes
limbs feel stiff


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 > 93 first warning,
MCV > 97 alert
MCV > 100 outright macrocytosis
MCV > 105 urgently needs treatment, severe problem






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 disfunction, low count
white cell changes, low count
hypersegmented 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
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 -angular cheilitis
Hyperhidrosis - excessive sweating

Bariatric surgery
Dilantin 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
Intestinal parasites
Intestinal bacterial overgrowrth
Low CSF cobalamin
Elevated CSF MMA
Elevated CSF Hcy
Low blood serum level
Elevated uMMA
Elevated blood serum Hcy


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 hypnopompic state transitioning from sleep
Prolonged hypnagogic state transitioning to sleep
Sleep paralysis
seizures
coma
nosebleeds
FREQUENT DIAGNOSES OR OTHER PROVIDER BEHAVIOR

FMS
CFS
ME
ED
IBS
Sub-acute combined degeneration
Low Testosterone
Fertility Problems, male and female
Sleep Disorders
Neural Tube Defects
Peripheral Neuropathy
Polyneuropathy
Autonomic neuropathy
Conversion Disorder
Hypochondria
"TOO many symptoms to be believable"
Liar
Alcoholic - non-drinker or genuine light drinker
Removed from Practice for knowing to much
Its All In Your Head - IAIYH
Removed from practice for insisting that there is REALLY something wrong instead of IAIYH
Alzheimer's
 

maddietod

Senior Member
Messages
2,859
Freddd -

This covers most of the symptoms I've had over the past 25 years. Diet is huge for me; I can give myself arthritis by eating nightshades (one serving), and I can make myself exhausted by eating gluten 3 days in a row. I drink milk, but it makes my eyes blurry. I can drink decaf tea, but my muscles get tight. Etc.

I've put * beside the things that go away when I eat right, and ** beside the things that are not a problem, since this change 2 weeks ago. (Are things that haven't bothered me recently)

(sore muscles throughout body*)
lack of muscle recovery after exercise
exercise does not build muscle
sore neck muscles
painfully tight, stiff muscles, especially one side of neck and down under shoulderblade **less
muscle pain especially around attachment points to bones, both shoulders **less
Joint pain*
Pain in weight bearing joints*
morning joint stiffness*

(bloating)
altered bowel habits - very very slow peristalsis if I don't take 600mg magnesium/day
gluten sensitivity
weight gain * losing significant weight since going low carb - lost appetite

reduced libido - loss of sexual desire**
loss of orgasmic intensity**
unsatisfying orgasms**
inability to orgasm**

(post-partum depression, next-to-last pregnancy, 6 years into CFS) I almost had a nervous breakdown

(heart arythymias)
(heart palpitations)

(vertigo) twice, lasted a few days

Confusion**
Disorientation**
Difficulty in word finding**
(SAD - Seasonal Affective Disorder)
mental slowing**
poor concentration**
Difficulty assimilating new information**
Reduced task completion**
tiredness**
memory loss**
listlessness**
impaired connection to others**
mentally fuzzy, foggy, brainfog**
anxiety or tension**
(nervousness)
(panic attacks)
Hypersensitivity to odors **less
Hypersensitivity to chemicals **less
Hypersensitivity to sounds and noises**
Hypersensitivity to light and visual stimuli**

mild fatigue** much less
continuous fatigue** much less
easy fatiguability** stamina improved
weakness** much less

non restorative sleep** much better
lack of dreaming**
note - terrible trouble getting to sleep, staying asleep, getting back to sleep** much better after initial bedlam (I take natural sleep aids nightly)

alterations and loss of taste** improving
alterations and loss of smell** improving
hypersensitivity/intolerance to bright light, mild** improving
Slow to adapt to night vision, mild
Night blindness, mild
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
low body temperature
intolerance to loud sounds** improving
intolerance to multiple sounds** much better

eczema (psoriasis)** nearly gone
dermatitis (random small round dry patches)** entirely gone
thin nails - break easily

Intestinal bacterial overgrowth, 6 months ago, not re-tested
candida overgrowth, 6 months ago, just finished treatment, not re-tested.

Madie
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd -

This covers most of the symptoms I've had over the past 25 years. Diet is huge for me; I can give myself arthritis by eating nightshades (one serving), and I can make myself exhausted by eating gluten 3 days in a row. I drink milk, but it makes my eyes blurry. I can drink decaf tea, but my muscles get tight. Etc.

I've put * beside the things that go away when I eat right, and ** beside the things that are not a problem, since this change 2 weeks ago. (Are things that haven't bothered me recently)

(sore muscles throughout body*)
lack of muscle recovery after exercise
exercise does not build muscle
sore neck muscles
painfully tight, stiff muscles, especially one side of neck and down under shoulderblade **less
muscle pain especially around attachment points to bones, both shoulders **less
Joint pain*
Pain in weight bearing joints*
morning joint stiffness*

(bloating)
altered bowel habits - very very slow peristalsis if I don't take 600mg magnesium/day
gluten sensitivity
weight gain * losing significant weight since going low carb - lost appetite

reduced libido - loss of sexual desire**
loss of orgasmic intensity**
unsatisfying orgasms**
inability to orgasm**

(post-partum depression, next-to-last pregnancy, 6 years into CFS) I almost had a nervous breakdown

(heart arythymias)
(heart palpitations)

(vertigo) twice, lasted a few days

Confusion**
Disorientation**
Difficulty in word finding**
(SAD - Seasonal Affective Disorder)
mental slowing**
poor concentration**
Difficulty assimilating new information**
Reduced task completion**
tiredness**
memory loss**
listlessness**
impaired connection to others**
mentally fuzzy, foggy, brainfog**
anxiety or tension**
(nervousness)
(panic attacks)
Hypersensitivity to odors **less
Hypersensitivity to chemicals **less
Hypersensitivity to sounds and noises**
Hypersensitivity to light and visual stimuli**

mild fatigue** much less
continuous fatigue** much less
easy fatiguability** stamina improved
weakness** much less

non restorative sleep** much better
lack of dreaming**
note - terrible trouble getting to sleep, staying asleep, getting back to sleep** much better after initial bedlam (I take natural sleep aids nightly)

alterations and loss of taste** improving
alterations and loss of smell** improving
hypersensitivity/intolerance to bright light, mild** improving
Slow to adapt to night vision, mild
Night blindness, mild
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
low body temperature
intolerance to loud sounds** improving
intolerance to multiple sounds** much better

eczema (psoriasis)** nearly gone
dermatitis (random small round dry patches)** entirely gone
thin nails - break easily

Intestinal bacterial overgrowth, 6 months ago, not re-tested
candida overgrowth, 6 months ago, just finished treatment, not re-tested.

Madie

HI Madie,

Can you remind of the change 2 weeks ago please?
 

maddietod

Senior Member
Messages
2,859
Sorry, Freddd.

I'd been on Rich's protocol for 9 months. I stopped that protocol, stopped all sources of folinic acid, folic acid, folates, and added in all of your supplements but NOT any b12s. I added the supplements because I wasn't taking a multi any more, and wasn't eating fruits/veggies. I had run out of my regular multi B, and had your Thorne B-Complex on hand, so I had been taking that for a few weeks before this change 2 weeks ago.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Sorry, Freddd.

I'd been on Rich's protocol for 9 months. I stopped that protocol, stopped all sources of folinic acid, folic acid, folates, and added in all of your supplements but NOT any b12s. I added the supplements because I wasn't taking a multi any more, and wasn't eating fruits/veggies. I had run out of my regular multi B, and had your Thorne B-Complex on hand, so I had been taking that for a few weeks before this change 2 weeks ago.


Hi Madie,

I suspect that mb12/adb12 and Metafolin would all help considerably based on your symptoms.