Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

New to all this. Loss of body sensitivity?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Jovvo, Jul 31, 2014.

  1. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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!
     
  2. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    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.
     
  3. Freddd

    Freddd Senior Member

    Messages:
    4,938
    Likes:
    1,470
    Salt Lake City
    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.
     
  4. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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?
     
  5. sregan

    sregan Senior Member

    Messages:
    660
    Likes:
    374
    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.
     
  6. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,178
    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.
     
  7. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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?
     
  8. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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: Aug 2, 2014
  9. Freddd

    Freddd Senior Member

    Messages:
    4,938
    Likes:
    1,470
    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.
     
  10. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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?
     
  11. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    If you are on Gabapentin you will definitely lose feeling in genitals and drive.....
     
  12. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    Hmm no I have never taken Gabapentin before. Have you experienced numb genitals before?
     
  13. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    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......
     
  14. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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?
     
  15. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    It goes away within a day and the nausea comes within a day
     
  16. Jovvo

    Jovvo

    Messages:
    8
    Likes:
    0
    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?
     
  17. Freddd

    Freddd Senior Member

    Messages:
    4,938
    Likes:
    1,470
    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.
     
  18. Freddd

    Freddd Senior Member

    Messages:
    4,938
    Likes:
    1,470
    Salt Lake City
    Deadlock Quartet - MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate (or ALCAR dependent on person)
     
  19. doors68

    doors68

    Messages:
    3
    Likes:
    0
    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!
     
  20. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,178
    Ventura, CA
    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.
     

See more popular forum discussions.

Share This Page