The 12th Invest in ME Research Conference June, 2017, Part 2
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Need 2nd opinion on my Freddd protocol implementation

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Bluelude1, Dec 20, 2015.

  1. Bluelude1

    Bluelude1

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    (Apologies in advance… I tried to keep this post as short as possible but with the required back story the length crept on me)

    My entire family has been doing the ‘Freddd Protocol’ for the last 4-5 months and it has been very enlightening to have so many closely related people working through the same thing at the same time. We all have slightly different symptoms but at the base we all had the following in common to varying degrees:
    • Low body temps (around 96 F upon rising)
    • Low pulse (mid 60bpm)
    • Progressive weight gain in the torso (we’re structurally long & thin people)
    • Increased malaise & brain fog
    Over the years the problems mostly only progressed, dully our wit, reducing our aspirations and becoming an increasingly larger issue in our lives. Like many people with this type of issue we’ve been through the gauntlet of treatments, but have finally begun to find noticeable improvements with the ‘Freddd protocol’. I oddly enough have diverged from the rest of the group in symptoms enough that I felt the need to ask for someone to double check my approach.

    A little background -

    For context I am a 6’3” 210lb 31-year-old male who has suffered with CFS for 8+ years. For the last 20-months I have had a very regimented diet based on the results of a food allergy blood test, that among other things avoids dairy, wheat and yeast. This made a HUGE difference for me, within short order reducing my CFS symptoms by 50-60%. I also went from having a terrible issue with conversational word dropping (my spoken and written sentences were like Swiss cheese) and taking 30-min to write a 3 sentence email, to about 75-80 % improvement in a matter of a few weeks.

    Even though things had improved so noticeably with the dietary changes I was still somewhat physically and mentally lethargic. I even found myself gravitating to a 2-3x daily 8oz Red Bull habit, as it was the only thing that would give me any improvement (but not eliminate the problem) on these fronts. At this point though my heart rate was closer to the low 70s and body temps 98.2-98.6F (I had been taking Thyroid to some effect on this front for months)

    Start of the ‘Freddd Protocol’ -

    For the first 3 months I laid the foundation for the protocol with the cofactors recommended and progressively built up my Folate consumption up to 8000mcg every 4 hours followed 45 min later by a heaping ½ tsp of potassium and ½ tsp of salt. I also worked up to 1000mg of Acetyl Carnitine 2x a day. All the way monitoring my blood pressure and pulse throughout the day. At this point I still felt more or less the same outside of having almost water like bowel movements and a bit of anxiety at the higher doses of Carnitine.


    Switch flipped –


    I wasn’t getting much effect from the protocol at this point and after going over everything we realized that 400mg of Magnesium Glycinate 1x a day was probably too low for someone of my size so we increased it based on my weight (at a ‘stress dose’) to 400mg 3x a day. All of a sudden within a day or so I went from a resting heart rate of 60bpm to a sustained 100-120bpm.

    At the same time both my anxiety and depression spiked as well my body temps ramped up to 98.8-99.2F (sitting in my office chair). It required me stopping all supplementation for 2 weeks before things finally begin to settle back down. With everything stopped (including the any thyroid) I actually started to eventually get lethargic again and resumed my Red Bull habit to some degree.

    Second attempt –

    Knowing this problem wasn’t going away unless I faced it I began to re-establish my co-factor regimen and began taking 1000mg of folate 1x day and after a couple of days began to add 200mg of Acetyl Carnitine 1x a day and did this for a week or so. I was doing ok on this an added an additional 1000mg of Folate at the end of the day. The next day I was still feeling a bit lethargic so I decided to add an additional 200mcg of Acetyl Carnitine at mid-day and within short order started feeling a bit stressed.

    Even though I stopped everything once it got rolling this proceeded to become a 2-week avalanche of high anxiety, depression and waking up with 120bpm heart rate. It was so bad I was taking 2000mg of Taurine, 750mg TMG and 500mg molybdenum every 4 hours in addition to GABA 2x a day and 2x Motrin PM to help me sleep. In addition to that at times I would also dunk my head in ice water multiple times a day (some times in the middle of night) to get my pulse down closer to the high 90bpm

    This brings us to now –

    I’ve lost 18lbs since the switch flipped likely through a combination of both the anxiety and nausea. Once again I have been taking the cofactors for the last several days as the anxiety and depression from my 2nd attempt, while still there, is notably less. My heart rate now is between 75-90bpm and my body temp 98.2-98.4F. I want to continue the protocol, but with the side effects so sustained and profound I want to make sure I am not missing something, hence my desire for a second opinion before I get near the folate or carnitine.

    FWIW – what is most odd to me is I was taking at one point 8000mg of folate every 4 hours and 1000mg of Acetyl Carnitine before breakfast and lunch for weeks with hardly any effect. All of the sudden it was like my tolerance collapsed.

    List of Co-factor regime:
    Zinc picolinate -50mg
    Vitamin A – 10,000IU
    Vitamin E – 400IU
    D3 – 10,000IU
    B6 – 100mg
    Chromium – 600mcg
    Selenium – 200mco
    Iodine (potassium iodide) – 225mcg
    Essential Aminos – 1x
    Vitamin C – 2,000mcg
    Magnesium Glycinate – 5mg per lb
    Thorne B-Complex #6 (Divided in half) 2x a day
    Calcium egg shells – ¾ tsp daily

    Deadlock Quartet
    CountryLife Methyl B12 – 5,000mcg 2x daily
    Solgar Folate – 1000mcg
    Source Natural Dibencozide – 1x daily (hours from the Methyl B12)
    Doctors Best Acetyl Carnitine
     
    Last edited: Dec 20, 2015
  2. Freddd

    Freddd Senior Member

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    Salt Lake City
    A@Bluelude1,

    It often helps to start at the beginning. A lot of the most indicative and/or important symptoms are ones most people exclude from listing. If I were sitting in your position I would take the list below and copy it into a spreadsheet (Excel).

    Then I would mark all the symptoms you had before starting anything, as say with a scale from 0 to 7, from not have the symptom at all to having the symptom anywhere from very mild to very severe. Then date and state changes, then fill the col. with all the symptoms and intensities for each change or each change of condition and each change of symptoms. Maybe you then have a view of every symptom and how it has changed over time. You can also color code changes as being increased, decreased or no change for instance. What I am trying to help you do is get a more clear view of your symptoms and what is going on.

    I can't say that Red Bull is a good choice. It has very little of most vitamins, it doesn't have anything potentially terrible or great.

    Some things can cause problems, even huge problems; NAC, Glutathione, folic acid, folinic acid, large amounts of vegetable folates, CyCbl, HyCbl, and too much of B1, B2, B3 and inositol, and maybe others.

    I found it works best to proceed very precisely and try to get everything into a known state and in the correct order.

    Did you get startup effects with MeCbl? AdoCbl? Methylfolate? How many mgs of potassium iwere required to stop potassium deficiency symptoms? Did you test ALCAR vs L-carnitine fumarate? When you got anxiety from carnitine did you titrate your way through it?

    Anyway, I think you need to get your symptoms and responses organized, then start building your logic and responses from the ground up. After you get all the symptoms laid out and marked we can reasonably discuss it and I will give you any number of opinions of what it looks like and what you might consider,




    RESPONSIVE SYMPTOMS LIST 12/13/2015 V 1.1
    In this post this is a list of symptoms from experience of symptoms relieved, many were/are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations of nutrients. This includes the symptoms from international lists of B12 and folate deficiencies in greater detail than generally stated. And this ignores that the UK, India, USA, Australia and others all have different definitions of B12 deficiency, as if the symptoms care which side of a line on a map for manifesting

    These symptoms responded almost entirely or entirely with basics 5 star MeCbl – methylcobalamin – Methylb12 - Mb12 - Mecobl . Many started improving in hours. Others took 9 months to correct.

    morning joint stiffness and pain
    paleness
    acid reflux
    nausea
    daily vomiting
    standing with eyes closed, lose balance
    hands feel gloved with loss of sensitivity - glove anesthesia
    feet feel socked by loss of sensitivity - stocking anesthesia
    glove and stocking anesthesia
    neuropathic bladder
    unable to release bladder, mild to severe
    unable to fully empty the bladder
    fecal incontinence - occasionally to frequently
    diminished hearing - gradual onset or present for life, sudden return possible
    tinnitus - ringing in ears
    always feeling cold
    intolerance to loud sounds
    intolerance to multiple sounds
    sleep disorders
    non restorative sleep
    Night terrors
    Prolonged hypnagogic or hypnopompic states transitioning to/from sleep
    Sleep paralysis
    alteration of touch all over body, normal touch can be unpleasant and painful
    alterations and loss of taste
    taste hallucinations
    smell hallucinations
    sound hallucinations
    visual hallucinations
    alterations and loss of smell
    loss of smell and taste of strawberries specifically
    loss or alteration of smell and taste of potato chips specifically
    roughening and increased raspiness of voice, mb12 can smooth it in mid word
    blurring of vision - can be sudden onset and sudden return
    Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
    optic atrophy
    centrocecal scotomata
    hypersensitivity/intolerance to bright light
    intolerance to loud sounds
    intolerance to multiple sounds
    burning muscle pain
    diminished hearing - gradual onset or present for life, sudden return possible
    tinnitus - ringing in ears
    sore burning tongue



    These symptoms responded strongly first to 5 star MeCbl and then Metafolin with basics. Many started improving in hours. Some took 7 years to correct.

    Bursitis
    stomach not emptying
    frequent vomiting
    acid regurgitation
    dyspepsia
    flatulence
    altered bowel habits
    abdominal pain
    loss of appetite for meat, fish, eggs, dairy, the only b12 containing foods
    nutrient specific anorexia
    intermittent constipation
    intermittent diarrhea
    irritable bowel syndrome
    sores, ulcers and lesions along entire GI tract or any part
    anorexia
    Bulimia
    Hypersensitivity to touch
    Hypersensitivity to odors
    Hypersensitivity to tastes
    Hypersensitivity to clothing texture
    Hypersensitivity to body malfunctions, symptoms
    Hypersensitivity to sounds and noises
    Hypersensitivity to light and visual stimuli
    Hypersensitivity to blood sugar changes
    Hypersensitivity to internal metabolic changes
    Hypersensitivity to temperature changes
    burning bladder (no UTI)
    painful urgency (no UTI)
    burning urethra (no UTI)
    Low blood serum level - below 550pg/ml, Japanese Standard
    elevated MCH (Mean Corpuscular Hemoglobin)
    elevated LDH
    big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
    platelet dysfunction, low count
    white cell changes, low count
    hyper segmented neutrophils
    headaches
    inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs
    inflamed endothelial tissues - lining of veins and arteries
    mucous becomes thick, jellied and sticky
    asthma
    chronic cough that mimics asthma but isn't
    chronic sinus congestion
    dermatitis herpetiformis, chronic intensely burning itching rash
    frequent infected follicles or acne type lesions all over body
    chronic infections, many varieties possible
    Seborrhic dermatitis
    dandruff
    eczema
    dermatitis
    skin on face, hands, feet, turns brown or yellow if anemia occurs
    poor hair condition
    thin nails
    transverse ridges on nails, can happen as healing starts
    mouth sensitive to hot and cold
    sore burning tongue
    beef-red tongue, possibly smoother than normal
    sore mouth, no infection or apparant reason
    teeth sensitive to hot and cold
    canker sores


    with p5p added

    Elevated blood serum Hcy, borderline or higher


    These symptoms responded relatively partially first to 5 star MeCbl and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.




    splits/sores at corners of mouth -angular cheilitis
    impaired white blood cell response
    poor resistance to infections
    easy bruising
    pronounced anemia
    macrocytic anemia
    megablastic anemia
    pernicious anemia
    decreased blood clotting
    MCV > 93 first warning,
    MCV > 97 alert
    MCV > 100 outright macrocytosis
    MCV > 105 urgently needs treatment, severe problem

    Plus Vitamin E
    Child with neural tube defects

    mother of child with neural tube defect

    These symptoms responded not at all first to 5 star and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.


    lack of dreaming
    MCV > 100 outright macrocytosis
    macrocytic anemia
    metallic taste in mouth
    Widespread body & muscle pain responding to NSAID
    Joint pain responding to NSAIDS
    splits/sores at corners of mouth -angular cheilitis


    Sexual related symptoms, both men and women – These responded with the most response to lesser responses in order to MeCbl, Metafolin (l-methylfolate), AdoCbl, L-carnitine fumarate

    reduced libido - loss of sexual desire
    loss of orgasmic intensity
    unsatisfying orgasms
    inability to orgasm
    loss and/or change of genital sensations
    burning genital skin sensation
    unable to feel aroused
    numb genital skin
    low sex hormones

    MEN

    In order of response – MeCbl, AdoCbl
    low testosterone men

    In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
    erectile dysfunction men

    In order of response – MeCbl, Metafolin, AdoCbl
    low sperm count
    poor sperm motility
    Poor sperm quality
    no sperm


    WOMEN

    In order of response – MeCbl, AdoCbl
    low testosterone
    low estrogen

    In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
    post partum depression
    post partum psychosis

    In order of response – MeCbl, Metafolin, AdoCbl
    Frequent miscarriage

    In order of response – MeCbl, Metafolin
    False positive pap smears, defective cells
    menstrual symptoms





    These symptoms are what responded very well to CNS penetrating doses of MeCbl either as 50mg sublingual single 4-5 hour dose or 4 x 7.5mg or 3 x 10mg or for some 2 x 15mg subcutaneous MeCbl injections. Metafolin in some way enhances retention of AdoCbl and MeCbl with excretion visibly decreased. A sublingual dose of 1-2 tablets each hour added for 12 hours appears to generate substantial CNS penetration as well.



    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


    Elevated CSF Hcy
    Low CSF cobalamin
    limbs feel stiff
    Drowsy


    CNS penetrating dose MeCbl – AdoCbl
    dimmed vision - usually not noticed going into it because change can be very slow or present for life
    Clumsiness



    CNS penetrating dose MeCbl – AdoCbl - Metafolin


    Slow to adapt to night vision


    CNS penetrating dose MeCbl – AdoCbl – Metafolin – LCF

    Difficulty in word finding



    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


    Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
    demyelinated areas on nerves
    subacute combined degeneration
    axonal degeneration of spinal cord
    unsteadiness of gait
    ataxic gait, particularly in dark
    positive Romberg
    positive Lhermittes
    Loss of motor control over some or all of toes
    Loss of motor control over part or all of feet
    Loss of sense of joint position
    sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
    sudden "ice pick" pain
    decreased reflexes
    brisk reflexes
    Foot Drop
    tripping over toes
    injuring toes catching top of toes on floor
    general feeling of weakness



    12. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect.


    These symptoms are what responded very well to L-carnitine fumarate AND AdoCbl for the first two items


    L-carnitine fumarate – AdoCbl – Metafolin - MeCbl


    weight loss involuntary
    muscular atrophy
    exercise does not build muscle



    L-carnitine fumarate – Metafolin – AdoCbl - MeCbl

    weight gain, watery fat
    edema


    L-carnitine fumarate – AdoCbl – MeCbl – Metafolin


    mild to extremely severe fatigue
    continuous extremely severe fatigue
    easy fatigability
    severe abnormal muscle fatigue up to and including apparent paralysis leading to death
    weakness
    muscle pain especially around attachment points to bones
    Eighteen severely tender muscle spots of FMS



    AdoCbl – L-carnitine fumarate


    exercise debilitates for up to a week, making things much worse
    accumulating muscle pains following exertion
    sore muscles throughout body
    lack of muscle recovery after exercise
    High urinary MMA



    AdoCbl – L-carnitine fumarate – Metafolin

    congestive heart failure
    Elevated CSF MMA
    Elevated uMMA





    MeCbl - AdoCbl – L-carnitine fumarate – Metafolin

    shortness of breath, oxygen hunger
    heart palpitations


    MeCbl - AdoCbl – L-carnitine fumarate

    extremely sore neck muscles reversing normal curvature of neck
    painfully tight, stiff muscles, especially legs and arms
    frequent muscle spasms anywhere in body
    weak pulse



    MeCbl - AdoCbl

    Confusion
    Disorientation
    Difficulty in word finding


    MeCbl - AdoCbl - Metafolin

    irritable
    depression
    SAD - Seasonal Affective Disorder
    mental slowing
    personality changes
    chronic malaise
    poor concentration
    moodiness
    tiredness
    mood swings
    memory loss
    listlessness
    impaired connection to others
    mentally fuzzy, foggy, brainfog
    dizziness - even unable to walk
    Vertigo


    MeCbl – Metafolin – AdoCbl – L-carnitine fumarate

    psychosis, including many of the most florid psychoses seen in literature, megaloblastic madness
    Alzheimer's
    delirium
    dementia
    paranoia
    delusions
    hallucinations - multisensory
    anxiety or tension
    nervousness
    mania
    Widespread pain throughout body



    A caution, those with anxiety and panic symptoms may respond with extreme moods of increased fear, anxiety, panic, anger rage, homicidal rage and profound depression, usually in repeatable sequences following LCF or ALCAR even at levels of 1mg oral. A micro titration of carnitine would be cautious. While most find the moods intolerable, certain persons have been able to tolerate these (both past) and current, to find they can fade after some months of consumption. A few people may find similar, maybe somewhat lesser, response to MeCbl or more likely AdoCbl. As these are less controllable than LCF which can be micro dosed, they should be considered first.
     
  3. manoj

    manoj

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    I find it interesting to see a parallel between Freddd and the Gerson therapy, where they supersaturate you with potassium (natural and supplemental) and give you daily methylcobalamin injections.
     
  4. Bluelude1

    Bluelude1

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    Freddd,

    After completing your responsive symptom list I've continued to dig into the issue. As mentioned in my PM there could very well be something going on familially with the B12s, which would be interesting to get your thoughts on.

    After looking into things even further I dug into my medical records over the last four years and found that prior to even starting your protocol my serum potassium levels were 4.2, 3.8, 3.9 & 4.7.

    So there was likely a number of potassium related mistakes I've made.
    1. It wouldn't surprise me to find that my potassium levels weren't adequate to begin with.
    2. In addition to that after investigating my diet as well, I was probably getting a daily intake of 2,000-2,500mg of potassium from food sources. Well below the recommended 4,700mg needed by normal person not on a methylation protocol.
    3. I was taking potassium 45 min after taking folate, but arbitrarily dosing.
    4. For the Coup de Grace I was often taking salt with the potassium to try to balance my BP around 120/80.
    Couple of things I've changed to seemingly positive effect.
    1. Stopped taking salt with the potassium
    2. Started to monitor and document my potassium intake to find my maintenance level of supplementation
    3. Started to up my potassium intake via powdered potassium gluconate dissolved in water to compensate for my dietary deficit.
    4. Stopped taking folate & carnitine while I stabilize on Methyl B, Active B and re-establish my potassium levels.
    Once I've stabilized on the B12s and potassium I plan to more or less follow the outline you covered when discussing penetrative dosing last year and slowly titrate the folate followed by the carnitine.

    http://forums.phoenixrising.me/index.php?threads/freddds-protocol-penetrative-dose-questions.34260/

    If anyone sees anything blatantly wrong with what I have described above please feel free to comment.
     
    Last edited: Dec 26, 2015

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