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Need 2nd opinion on my Freddd protocol implementation

Messages
87
(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
 
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Freddd

Senior Member
Messages
5,184
Location
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.
 
Messages
18
Location
India
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.
 
Messages
87
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.
 
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