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New to all this. Loss of body sensitivity?

Messages
8
Hello everyone,

I'm new to this forum. I'm here because I've been looking for a cause of my symptoms. I've seen a few doctors and they are little lost as well.

Anyway, for about the past 11 months I've been experiencing a sort of loss of skin sensitivity over my body. Not a tingling numbness, but more like sensation is kind of muted. The most troubling area of my body I feel this is in my genitals. I'm a 23 year old male by the way.

My genitals feel pretty numb. Its such a weird feeling. My whole body seems to have lost some sensitivity as well.

I first noticed this numbness one morning in the shower. Believe it or not, but it started after I took the supplement SAM-e for about a week. I was taking 800mg of SAM-e daily for about a week and stopped because of headache and nausea side effects. I was taking it for its advertised mood support. This was the first time I had ever taken SAM-e.

After the week of SAM-e I felt pretty fine, then a few days later I felt my genitals go numb. My whole body seemed to be pretty numbish. At the time I didn't associate the SAM-e with the numbness, but now I remember the numbness started after that week of the SAM-e.

I still have the numbness 11 months later. I have seen a neurologist because I suspected something like MS. I had MRIs of brain and spine and both came back clear of MS. I then got my B12 levels tested and got tested for Lyme. Neurologist said they came back fine. He is pretty confused at the moment.

So I've been researching for a while trying to find a cause for my symptoms and I came across this forum.

I came across a few threads that have these symptoms listed for some kind of condition:

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

These symptoms were listed in a long list of other symptoms for a condition I'm not sure I understand.

So I was wondering if anyone had any theories for my condition or if they have experienced it themselves before.

Does this sound like a problem SAM-e could cause? I read somewhere that SAM-e is some kind of methylating agent or something. I'm not familiar with any of this lingo sorry.

I appreciate any advice on my condition thanks!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I have had sensation loss (which comes and goes) but its definately related to the ME/CFS I have, you obviously do not have ME/CFS thou so sorry I cant help.

I do know messing with methylation stuff can cause some strange symptoms at times but I cant say if it could of been that or not. Fredd would be probably the best person to ask anything to do with methylation.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hello everyone,

I'm new to this forum. I'm here because I've been looking for a cause of my symptoms. I've seen a few doctors and they are little lost as well.

Anyway, for about the past 11 months I've been experiencing a sort of loss of skin sensitivity over my body. Not a tingling numbness, but more like sensation is kind of muted. The most troubling area of my body I feel this is in my genitals. I'm a 23 year old male by the way.

My genitals feel pretty numb. Its such a weird feeling. My whole body seems to have lost some sensitivity as well.

I first noticed this numbness one morning in the shower. Believe it or not, but it started after I took the supplement SAM-e for about a week. I was taking 800mg of SAM-e daily for about a week and stopped because of headache and nausea side effects. I was taking it for its advertised mood support. This was the first time I had ever taken SAM-e.

After the week of SAM-e I felt pretty fine, then a few days later I felt my genitals go numb. My whole body seemed to be pretty numbish. At the time I didn't associate the SAM-e with the numbness, but now I remember the numbness started after that week of the SAM-e.

I still have the numbness 11 months later. I have seen a neurologist because I suspected something like MS. I had MRIs of brain and spine and both came back clear of MS. I then got my B12 levels tested and got tested for Lyme. Neurologist said they came back fine. He is pretty confused at the moment.

So I've been researching for a while trying to find a cause for my symptoms and I came across this forum.

I came across a few threads that have these symptoms listed for some kind of condition:

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

These symptoms were listed in a long list of other symptoms for a condition I'm not sure I understand.

So I was wondering if anyone had any theories for my condition or if they have experienced it themselves before.

Does this sound like a problem SAM-e could cause? I read somewhere that SAM-e is some kind of methylating agent or something. I'm not familiar with any of this lingo sorry.

I appreciate any advice on my condition thanks!

Hi Jovvo,

Those are the symptoms I and people from that forum and another have had nutrient effectiveness for the listed symptoms. The symptoms are the symptoms that thousands of people suffer from with CFS/FMS/ME and other similar disease patterns, and an international multi country consolidated list of symptoms for B12 and folate deficiencies. Are those 100% of your symptoms, the overall lack of sensitivity and the specific sexual neurological symptoms.

I can think of some possibilities, but I admit I've never seen just this set of symptoms in isolation. For me and most others who have had this set of symptoms have 100-200 other symptoms including other neurological symptoms. I also had overall body lack of sensation. How is your sense of taste? Can you taste and smell strawberries normally for instance?.


A CNS MeCbl deficiency which isn't tested for except in research, might be at cause in the general lack of sensitivity. Let's hypothesize for a moment. Consider SAM-e facilitates/enhances certain functions where it might sort of substitute for folate (hypothetical) but still require the MeCbl which is in short supply for unknown at this moment reason. The MeCbl is redirected to these reactions instead of being in the nerves. Loss of MeCbl causes dimming of the senses, all the senses as far as I know. Then you would have induced methyltrap in the CNS "triage level". Demyelination lesions start to form in about 2 weeks after start of methyltrap in the cord and brain (from a variety of literature) and personal experience, and can severely affect a nerve. Further, neurotransmitters get all messed up by the deficiency. Now in orgasm dopamine and oxytocin both get released in various parts of the brain and especially the limbic system and this is responsible for much of what we feel as orgasm as well as the nerve signals. Now "mute" the nerve signals, and be unable to generate dopamine and oxytocin because of lack of ATP and methylation. The two are mutually dependent so the whole cycle can crash from lack of one thing out of the deadlock quartet. And it is no problem to have a relatively "pure" CNS deficiency of MeCbl or AdoCbl or both.


I can conceive that taking SAM-e under specific circumstances could cause these problems and probably some other non specific or relatively minor symptoms as well. This hypothesis can be tested and if correct your problems can still probably be corrected with the correct treatment. The MeCbl is considered harmless and non toxic. If there is no deficiency it does nothing. To have maximum chance of getting it right would take a bit of planning.

I understand why the neurologist is confused. Being able to list all those symptoms, apparently "nailing" the description I would think that it demonstrates some understanding or at least experience. Many of those symptoms have gone away but some remain as I have a substantial amount of damage from 17 years in methyltrap and partial ATP block. If I am correct most of it is correctable functionally and likely able to mostly heal over the next couple of years. My experience and some others is that the first healing response is the best one and should be ridden as far as possible. Reasonably full healing if possible could take 5 years and a very specific set of circumstances. You can't just throw some B12 at it and expect it to work. There are lots of "if"s here and no guarantees.

You would need the help of somebody who can understand this lingo. I have consulted to MDs on other occasions.
 
Messages
8
Hi Jovvo,

Those are the symptoms I and people from that forum and another have had nutrient effectiveness for the listed symptoms. The symptoms are the symptoms that thousands of people suffer from with CFS/FMS/ME and other similar disease patterns, and an international multi country consolidated list of symptoms for B12 and folate deficiencies. Are those 100% of your symptoms, the overall lack of sensitivity and the specific sexual neurological symptoms.

I can think of some possibilities, but I admit I've never seen just this set of symptoms in isolation. For me and most others who have had this set of symptoms have 100-200 other symptoms including other neurological symptoms. I also had overall body lack of sensation. How is your sense of taste? Can you taste and smell strawberries normally for instance?.


A CNS MeCbl deficiency which isn't tested for except in research, might be at cause in the general lack of sensitivity. Let's hypothesize for a moment. Consider SAM-e facilitates/enhances certain functions where it might sort of substitute for folate (hypothetical) but still require the MeCbl which is in short supply for unknown at this moment reason. The MeCbl is redirected to these reactions instead of being in the nerves. Loss of MeCbl causes dimming of the senses, all the senses as far as I know. Then you would have induced methyltrap in the CNS "triage level". Demyelination lesions start to form in about 2 weeks after start of methyltrap in the cord and brain (from a variety of literature) and personal experience, and can severely affect a nerve. Further, neurotransmitters get all messed up by the deficiency. Now in orgasm dopamine and oxytocin both get released in various parts of the brain and especially the limbic system and this is responsible for much of what we feel as orgasm as well as the nerve signals. Now "mute" the nerve signals, and be unable to generate dopamine and oxytocin because of lack of ATP and methylation. The two are mutually dependent so the whole cycle can crash from lack of one thing out of the deadlock quartet. And it is no problem to have a relatively "pure" CNS deficiency of MeCbl or AdoCbl or both.


I can conceive that taking SAM-e under specific circumstances could cause these problems and probably some other non specific or relatively minor symptoms as well. This hypothesis can be tested and if correct your problems can still probably be corrected with the correct treatment. The MeCbl is considered harmless and non toxic. If there is no deficiency it does nothing. To have maximum chance of getting it right would take a bit of planning.

I understand why the neurologist is confused. Being able to list all those symptoms, apparently "nailing" the description I would think that it demonstrates some understanding or at least experience. Many of those symptoms have gone away but some remain as I have a substantial amount of damage from 17 years in methyltrap and partial ATP block. If I am correct most of it is correctable functionally and likely able to mostly heal over the next couple of years. My experience and some others is that the first healing response is the best one and should be ridden as far as possible. Reasonably full healing if possible could take 5 years and a very specific set of circumstances. You can't just throw some B12 at it and expect it to work. There are lots of "if"s here and no guarantees.

You would need the help of somebody who can understand this lingo. I have consulted to MDs on other occasions.

Thanks for the reply Freddd,

I found a long list of symptoms from another thread. I will mark which symptoms I suffer from from this list.

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 Don't Know
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 Haven't had a strawberry in a long time
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 Don't know
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

There are several things from this list that I'm not sure of. I'm not sure of my sense of taste. I have not had a strawberry in a long time. I will buy some today and test it though.

I've been reading that most people recommend that SAM-e be taken along with B vitamins or else it will raise homocysteine levels. I didn't take any b vitamins during my trial with the SAM-e. I don't know if that's worth mentioning.

What is MeCbl? Is that a supplement?
 

sregan

Senior Member
Messages
703
Location
Southeast
I can help with the lack of dreaming part :) Vitamin B6 is your dream friend. P5P the active form of B6 is what I take. Would start with a small dose early in the day (< 100mg B6 or < 25mg p5p). I've also found taking vitamin D3 before bed increases dreaming and overall sleep quality.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
What exactly were your b12 levels when they came back? Even if they are low normal it doesn't mean that is what your body is actively using. I don't think Sam-E alone would cause these issues unless there was some kind of impurity in the supplement. Though it can soak up your v12 reserves which may have already been low. This means in the blood not the liver which is where the test shows levels of. A low normal test is still indicative of following up with an active b12 test. Or at the least just take a methyl b12 sublingual and some methyl folate each day to make sure you don't fall into it.
 
Messages
8
What exactly were your b12 levels when they came back? Even if they are low normal it doesn't mean that is what your body is actively using. I don't think Sam-E alone would cause these issues unless there was some kind of impurity in the supplement. Though it can soak up your v12 reserves which may have already been low. This means in the blood not the liver which is where the test shows levels of. A low normal test is still indicative of following up with an active b12 test. Or at the least just take a methyl b12 sublingual and some methyl folate each day to make sure you don't fall into it.

I don't really know what my levels were exactly. My doctor just told me they were fine. I guess I could try supplementing b12. Its worth a shot I suppose.

I purchased some methyl b12 yesterday. Is methyl folate just as important as the b12?
 
Messages
8
Hi Jovvo,

Those are the symptoms I and people from that forum and another have had nutrient effectiveness for the listed symptoms. The symptoms are the symptoms that thousands of people suffer from with CFS/FMS/ME and other similar disease patterns, and an international multi country consolidated list of symptoms for B12 and folate deficiencies. Are those 100% of your symptoms, the overall lack of sensitivity and the specific sexual neurological symptoms.

I can think of some possibilities, but I admit I've never seen just this set of symptoms in isolation. For me and most others who have had this set of symptoms have 100-200 other symptoms including other neurological symptoms. I also had overall body lack of sensation. How is your sense of taste? Can you taste and smell strawberries normally for instance?.


A CNS MeCbl deficiency which isn't tested for except in research, might be at cause in the general lack of sensitivity. Let's hypothesize for a moment. Consider SAM-e facilitates/enhances certain functions where it might sort of substitute for folate (hypothetical) but still require the MeCbl which is in short supply for unknown at this moment reason. The MeCbl is redirected to these reactions instead of being in the nerves. Loss of MeCbl causes dimming of the senses, all the senses as far as I know. Then you would have induced methyltrap in the CNS "triage level". Demyelination lesions start to form in about 2 weeks after start of methyltrap in the cord and brain (from a variety of literature) and personal experience, and can severely affect a nerve. Further, neurotransmitters get all messed up by the deficiency. Now in orgasm dopamine and oxytocin both get released in various parts of the brain and especially the limbic system and this is responsible for much of what we feel as orgasm as well as the nerve signals. Now "mute" the nerve signals, and be unable to generate dopamine and oxytocin because of lack of ATP and methylation. The two are mutually dependent so the whole cycle can crash from lack of one thing out of the deadlock quartet. And it is no problem to have a relatively "pure" CNS deficiency of MeCbl or AdoCbl or both.


I can conceive that taking SAM-e under specific circumstances could cause these problems and probably some other non specific or relatively minor symptoms as well. This hypothesis can be tested and if correct your problems can still probably be corrected with the correct treatment. The MeCbl is considered harmless and non toxic. If there is no deficiency it does nothing. To have maximum chance of getting it right would take a bit of planning.

I understand why the neurologist is confused. Being able to list all those symptoms, apparently "nailing" the description I would think that it demonstrates some understanding or at least experience. Many of those symptoms have gone away but some remain as I have a substantial amount of damage from 17 years in methyltrap and partial ATP block. If I am correct most of it is correctable functionally and likely able to mostly heal over the next couple of years. My experience and some others is that the first healing response is the best one and should be ridden as far as possible. Reasonably full healing if possible could take 5 years and a very specific set of circumstances. You can't just throw some B12 at it and expect it to work. There are lots of "if"s here and no guarantees.

You would need the help of somebody who can understand this lingo. I have consulted to MDs on other occasions.

Hi Freddd,

I noticed you mentioned neurotransmitters being messed up. I believe SAM-e is known to increase neurotransmitters such as serotonin and dopamine. Is it possible the SAM-e created some kind of imbalance?

I've been getting pretty scared by looking on the internet and I've found a condition called PSSD (Post SSRI Sexual Dysfunction). People get this condition after they have quit SSRIs. They can experience erectile dysfunction, low libido, anorgasmia, numb genitals, and more.

In Fall 2011, two years prior to my numbness, I tried one 5mg pill of an SSRI called Lexapro. It was my first every SSRI. I had a horrible reaction to it. I had a day long panic attack, vomiting, and racing thoughts. Threw out the Lexapro right afterwards and it made me never want to touch another SSRI ever again. I had "brain zaps" for about a week afterwards, but luckily they stopped. Luckily, I didn't have any lasting side effects from the one Lexapro.

Two years later in Fall 2013, I tried the supplement SAM-e. I took 800mg daily for about a week. A few days after stopping the SAM-e I felt my genitals go numb. I saw doctors and they couldn't find anything wrong.

I'm hoping I didn't somehow mess up some neurotransmitters that deal with sensation the same way SSRI users get messed up. I've asked on PSSD boards before and most people there say that they don't believe I have PSSD, but PSSD is a very mysterious condition. I guess it's comforting that they don't believe I have PSSD, but I'm still lost looking for a cause.

Anyway, I'd appreciate any opinions or advice on my situation.
 
Last edited:

Freddd

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

The good news is if it is somehow messed up B12, mfolate and such, and the neurotransmitters, that a trial with the right supplements, MeCbl and cofactors, the Deadlock Quartet, will demonstrate to you very quickly if it is likely to help. MeCbl has no effect on somebody who already has sufficiency. You will probably know quickly. For that at least you don't need to be floundering around.
 
Messages
8
Hi Jovvo,

The good news is if it is somehow messed up B12, mfolate and such, and the neurotransmitters, that a trial with the right supplements, MeCbl and cofactors, the Deadlock Quartet, will demonstrate to you very quickly if it is likely to help. MeCbl has no effect on somebody who already has sufficiency. You will probably know quickly. For that at least you don't need to be floundering around.

Thanks for replying Freddd,

I hope I'm not annoying you with my ignorance, but what is the Deadlock Quartet?

Also what other supplements would you recommend me trying other than the methyl b12 and methyl folate?
 
Messages
8
Yes,I'm on Gabapentin..

Gabapentin takes my 24/7/365 days a year nausea away.......

So that's a definite fair trade, I guess......
True that does sound like a fair trade. I would do the same. Does your numbness go away after you stop the Gabapentin or does it stick around?
 
Messages
8
It goes away within a day and the nausea comes within a day

Man I feel for ya. Well at least the med helps you, that's good.

My numbness is weird. I'm not on any kind of medication and I have it. Its like my my perineum and ass are numb too along with the genitals. The numbness covers my whole pubic area too. Is that how yours feels?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Jovvo,

I used to have almost constant nausea, daily vomiting. I was prescribed Compazine suppositories. I also has upwelling acid in my throat nightly. That all literally went away within the first few days of MeCbl. I never even finished my last Compazine prescription. Now there is another problem, paralyzed ileum from low potassium. That is dangerous. Many opioids can also cause similar problems. I still have Metoclopramide on hand when it happens to me.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for replying Freddd,

I hope I'm not annoying you with my ignorance, but what is the Deadlock Quartet?

Also what other supplements would you recommend me trying other than the methyl b12 and methyl folate?

Deadlock Quartet - MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate (or ALCAR dependent on person)
 
Messages
3
This is the interesting thing. I have ejaculatory anhedonia/anorgasmia that started at about the same time I got ill with a variety of problems in about 2004, and then kind of plateaued and then worsened completely when I went gluten free two years ago.

At about age 25 I started suddenly having problems sleeping, some nausea/cyclical vomiting in the morning, some muscle loss and joint laxity. I was also having anxiety and diarrhea. Tried to get diagnosed by going to a gastroenterologist and getting tested for celiac which came back negative, then had to go to the ER in 2006 and diagnosed with ulcerative colitis.

Suffered with colitis, which was controlled using Colazal (an anti-inflammatory) for 10 years (I'm still on the pills but its pretty well under control last colonoscopy showed no inflammation, new gastro doctor now tells me i don't have any signs of the chronicity for ulcerative colitis) Then I went gluten free, having so many IBS issues an having family report that they felt better on gluten free diet. Went gluten free two years ago and it cleared up pretty much all of my IBS symptoms and I got a clean bill of health on my last endoscopy/colonoscopy. So I'm pretty much a medical mystery with the digestive symptoms.

I also suffered from terrible joint laxity and joint pain in the upper back and neck, having to go to the chiro about every two weeks. The joint pain was pretty much worse than the colitis!

Fast forward to recently. I got well enough to get involved in a relationship and realized that my sexual function was devastated. Even had problems with erections, which was never an issue. Last year it was at the point where my gentials were completely numb. Also started to realize that my sphincters weren't working very well - causing some IBS issues and also stress urinary incontinence which I have had on and off since probably high school. Also realized I was having some kind of retrograde ejaculation which approximately coincided with the numbness and my other symptoms when I came down with ulcerative colitis.

Then I was tested for MTHFR and found I was compound heterozygous, MAO+, some COMT mutations and others. I posted my results here:

http://forums.phoenixrising.me/index.php?threads/methylation-pathway-analysis-results.28834/

I have found that the methylation supplements I take have given me more energy and reduced several other mildly annoying issues I had, including some histamine intolerance/alcohol intolerance. I kind of combine the protocol here (as far as MeCB) with Yasko's approach. Anyway, as I am wanting to comment on the numbness/anhedonia/anorgasmia:

1. Initially when I started methylcobalamin (source naturals sublingual) I felt like my genital sensitivity was improving as well as my libido (which was practically nonexistent) After my initial detox reaction to the b12 went away and I could sleep again, all positive effects of the b12 on my sex life stopped.
2. My vitamin D was low and taking 50,000IU as prescribed began to help with erectile dysfunction and energy levels. Some help but nothing to write home about - still numb.
-At this point, with the methylation treatment, my sexual stamina was ok, but my libido was still crap, my sensation only mildly better.

3. Recently had a bad time sleeping and forgot that usually I take niacin when this happens (e.g. overmethylated) I went to the doctor and got ambien. While on ambien, I experienced some sharp pains when I urinated, but noticed that my reflexes down there (including perianal area) were strong again...I also peed with a lot more force and the stress urinary incontinence stopped! Then I remembered the niacin, and began taking that instead of the ambien, which wasn't helping my sleep but was giving me nightmares. The niacin continued the same thing with my urinary situation, I continued to get the sharp pains and more forcefully urinate and not get the dribbles so bad after urinating. Eventually, these results stopped once I was off the ambien altogether, however. I hypothesize that something GABAergic somehow acted on my motor neurons down there (perhaps onuf's nucleus but more on that later)

4. Recently decided to try out taking Manganese since I was reading about it with the methylation protocol and also considering lyme disease. I was bitten on the testicles by a tick as a kid in arkansas, and I have visited connecticut several times. I bought 10 mg of chelated manganese and began taking it daily. So far it seems that the manganese has cured my terrible joint pain! I also began to have a bit more libido and more full erections as well as a bit more sensation during sex and orgasm - but not like it used to be before I got sick, still not what it needs to be to be normal.

This is where it stands with me now. I tend to think that I have some issue with neurotransmitters because my anhedonia is not only sexual - I also have lost interest in playing music which i used to do, as well as any artistic ambitions. Also, my sexual anhedonia got much worse when i went gluten free. Furthermore, I have weak sphincters both urinary and anal, which seems to argue for a neurological issue. Also, my response to the ambien would seem to argue for some neurotransmitter dysfunction, if only gaba/glutamate. I was reading about something called "Onuf's nucleus," and I believe that neurological dysfunction in this area could cause my sphincter problems as well as retrograde ejaculation and anorgasmia. But so far, I have not found the "magic bullet" supplement to cure my genital numbness and anorgasmia.

So far I have been taking seeking health methylfolate sublingual, source naturals methylcobalamin, occasional adenosylcobalamin, 50 mg P5P, 30 mg zinc piccolinate, yasko all in one vitamin, 10 mg manganese, seeking health "B-minus" B complex. I take chamomile, inositol, melatonin for sleep with occasional yasko becalm gaba spray.

I also seem to recall growing up that I would get a manic surge in sexual sensation and libido when I would take certain cold medication when sick. As far as I can research, I belive the cold medicines I used to favor contained phenylpropanalomine or PPA which was banned from the US in 2000 due to causing strokes to women who were taking megadoses in weight loss drugs. So now I can't even experiment with it. It is still approved for veterinary use to treat incontinence! From my research, phenylpropanalomine is an alpha-2-adrenergic agonist and is somehow related to phenylethylalamine, which is involved by the way, with the MAO B snp, along with dopamine. I wasn't tested for MAO B because I took the yasko test, not 23andme.

Any advice would be appreciated!
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
This is the interesting thing. I have ejaculatory anhedonia/anorgasmia that started at about the same time I got ill with a variety of problems in about 2004, and then kind of plateaued and then worsened completely when I went gluten free two years ago.

At about age 25 I started suddenly having problems sleeping, some nausea/cyclical vomiting in the morning, some muscle loss and joint laxity. I was also having anxiety and diarrhea. Tried to get diagnosed by going to a gastroenterologist and getting tested for celiac which came back negative, then had to go to the ER in 2006 and diagnosed with ulcerative colitis.

Suffered with colitis, which was controlled using Colazal (an anti-inflammatory) for 10 years (I'm still on the pills but its pretty well under control last colonoscopy showed no inflammation, new gastro doctor now tells me i don't have any signs of the chronicity for ulcerative colitis) Then I went gluten free, having so many IBS issues an having family report that they felt better on gluten free diet. Went gluten free two years ago and it cleared up pretty much all of my IBS symptoms and I got a clean bill of health on my last endoscopy/colonoscopy. So I'm pretty much a medical mystery with the digestive symptoms.

I also suffered from terrible joint laxity and joint pain in the upper back and neck, having to go to the chiro about every two weeks. The joint pain was pretty much worse than the colitis!

Fast forward to recently. I got well enough to get involved in a relationship and realized that my sexual function was devastated. Even had problems with erections, which was never an issue. Last year it was at the point where my gentials were completely numb. Also started to realize that my sphincters weren't working very well - causing some IBS issues and also stress urinary incontinence which I have had on and off since probably high school. Also realized I was having some kind of retrograde ejaculation which approximately coincided with the numbness and my other symptoms when I came down with ulcerative colitis.

Then I was tested for MTHFR and found I was compound heterozygous, MAO+, some COMT mutations and others. I posted my results here:

http://forums.phoenixrising.me/index.php?threads/methylation-pathway-analysis-results.28834/

I have found that the methylation supplements I take have given me more energy and reduced several other mildly annoying issues I had, including some histamine intolerance/alcohol intolerance. I kind of combine the protocol here (as far as MeCB) with Yasko's approach. Anyway, as I am wanting to comment on the numbness/anhedonia/anorgasmia:

1. Initially when I started methylcobalamin (source naturals sublingual) I felt like my genital sensitivity was improving as well as my libido (which was practically nonexistent) After my initial detox reaction to the b12 went away and I could sleep again, all positive effects of the b12 on my sex life stopped.
2. My vitamin D was low and taking 50,000IU as prescribed began to help with erectile dysfunction and energy levels. Some help but nothing to write home about - still numb.
-At this point, with the methylation treatment, my sexual stamina was ok, but my libido was still crap, my sensation only mildly better.

3. Recently had a bad time sleeping and forgot that usually I take niacin when this happens (e.g. overmethylated) I went to the doctor and got ambien. While on ambien, I experienced some sharp pains when I urinated, but noticed that my reflexes down there (including perianal area) were strong again...I also peed with a lot more force and the stress urinary incontinence stopped! Then I remembered the niacin, and began taking that instead of the ambien, which wasn't helping my sleep but was giving me nightmares. The niacin continued the same thing with my urinary situation, I continued to get the sharp pains and more forcefully urinate and not get the dribbles so bad after urinating. Eventually, these results stopped once I was off the ambien altogether, however. I hypothesize that something GABAergic somehow acted on my motor neurons down there (perhaps onuf's nucleus but more on that later)

4. Recently decided to try out taking Manganese since I was reading about it with the methylation protocol and also considering lyme disease. I was bitten on the testicles by a tick as a kid in arkansas, and I have visited connecticut several times. I bought 10 mg of chelated manganese and began taking it daily. So far it seems that the manganese has cured my terrible joint pain! I also began to have a bit more libido and more full erections as well as a bit more sensation during sex and orgasm - but not like it used to be before I got sick, still not what it needs to be to be normal.

This is where it stands with me now. I tend to think that I have some issue with neurotransmitters because my anhedonia is not only sexual - I also have lost interest in playing music which i used to do, as well as any artistic ambitions. Also, my sexual anhedonia got much worse when i went gluten free. Furthermore, I have weak sphincters both urinary and anal, which seems to argue for a neurological issue. Also, my response to the ambien would seem to argue for some neurotransmitter dysfunction, if only gaba/glutamate. I was reading about something called "Onuf's nucleus," and I believe that neurological dysfunction in this area could cause my sphincter problems as well as retrograde ejaculation and anorgasmia. But so far, I have not found the "magic bullet" supplement to cure my genital numbness and anorgasmia.

So far I have been taking seeking health methylfolate sublingual, source naturals methylcobalamin, occasional adenosylcobalamin, 50 mg P5P, 30 mg zinc piccolinate, yasko all in one vitamin, 10 mg manganese, seeking health "B-minus" B complex. I take chamomile, inositol, melatonin for sleep with occasional yasko becalm gaba spray.

I also seem to recall growing up that I would get a manic surge in sexual sensation and libido when I would take certain cold medication when sick. As far as I can research, I belive the cold medicines I used to favor contained phenylpropanalomine or PPA which was banned from the US in 2000 due to causing strokes to women who were taking megadoses in weight loss drugs. So now I can't even experiment with it. It is still approved for veterinary use to treat incontinence! From my research, phenylpropanalomine is an alpha-2-adrenergic agonist and is somehow related to phenylethylalamine, which is involved by the way, with the MAO B snp, along with dopamine. I wasn't tested for MAO B because I took the yasko test, not 23andme.

Any advice would be appreciated!

I would probably suggest following up more with the lyme. Those were some of my very first symptoms that only got worse, then almost went away, and came back again. It is very up and down right now because I am still treating. I had similar issues with my tendons and stuff too but all over my body. You would need to get tested through IgeneX for higher accuracy and make sure you see a lyme literate doctor for that. Don't experiment with weird drugs for such a transient symptom either, you don't want to risk other issues for something that will go away in time anyways.