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A thread about my Freddd protocol implementation.

Messages
18
Hi @Freddd and everyone!

I'm 32 and was DX with MS at 20. I've long thought it was an incorrect DX.

I finally went through Freddd's list of symptoms and narrowed it down to only those that I have experienced. I added a couple of my own at the beginning. I was amazed at the list how many of those symptoms I didn't even realize you could describe.

I was feeling pretty hopeless for all of 2013 and a good part of 2012 because I could see that my condition's progression was accelerating rapidly. I have always gotten worse and never better but it was always a slow worsening up until then. I had Norovirus in May 2013 that probably triggered more spiraling.

I began supplementing for MTHFR and methylation on January 2, 2014, and I quit gluten and dairy about a week or two later because the standard foods I knew to eat were making me too lethargic to even function anymore and I lost a lot of weight, I lost muscle, and I got very weak.

I began to feel a little bit better before I changed my diet, but gluten and dairy were among the things that Dr. Lynch says to give up, and I think that was key. I continued to research for weeks and weeks when eventually I came upon the Freddd protocol. After more weeks of reading I placed an order and shortly began on the protocol. I'm really bad at logging things but it has been not even a month and I am noticing positive changes on most days. I definitely experienced a brightening. This is the first time ever in 10+ years that I felt I was getting better rather than worse over time.

I was in to see my doctor and he ordered some blood tests right at the beginning of February before I started on the protocol. That will make a nice marker because it was also right about one month after I stopped gluten and dairy. I just got my lab results. I only know to look at a couple of things. My MCV is 92.5. My K is 3.9. My D vitamin is a 82.2. Do you know of any other pertinent markers I may have available?

From all that I have read, I think there could be something to this. I've played around with my dosages for the past month and I seem to have no start up effects with all of the basics, all cofactors, the deadlock quartet, and almost all of the extended cofactors. I didn't think I had any potassium issues, but I tried out some potassium gluconate tablets a few days ago, and I found that my chest and arm tightness is relieved with 200 to 300 mg. As a result of trying to determine my specific tolerable foods one food at a time I have become better able to detect subtleties in my symptoms. I need to go through the below list again and note in writing what has changed.

I bought a bottle of Perque sublingual hydroxycobalamin because I wanted to know how it would affect me versus the mb12, which makes me sleepy. I feel like it is ineffective at all on me and even possibly stopped healing when I mostly took it instead yesterday in part because I was out of mb12 until today. I have some methylcobalamin lollipops with 3.6mg in them called RevitaPOP which I especially looked forward to after dinner last night.

I have been taking ALCAR right before bed for about a week because I read somewhere it will help with sleep. It seemed to help the first couple nights but now that it is established it just makes me really "high" in bed. I feel great and I can think very clearly. It's frustrating because I have so many thoughts and I don't remember them the next day to share them. I've also been taking L-Carnitine Fumarate 30 minutes before my first meal in the morning. From what I can see they should not overlap because ALCAR has a very short half-life in contrast. Regardless, I am going to switch to only the ALCAR for awhile and only in the morning.

Now I want to settle down with my experimenting and start again. Let's say I am established on all the basics and at least 1-3mg mb12. I will get the current symptom list together soon as well as a list of the supplements and dosages that I've been taking. Would it be possible to give me a step-by-step of when to start the second component of the deadlock quartet and how long do I take that before I add the second? I'm sure there is much more to be said let me know if you have any questions about me.

Thank you for your time and patience.

-N



My symptoms (as of 1/1/2014, already changing) from Freddd's list:

Incessant leg jumping, usually one or other not both, happened this morning, stopped by 198mg potassium gluconate, yay!
Hypersensitive to food, many things can trigger immediate lethargy/weakness
hands lose function with normal use
Sore spots on buttocks from sitting, no visible marks
Sore back of feet, heels
Burning heels of feet
Random twitches throughout body
Jumpy feet/legs
Clonus in feet
Painful arm twitches downward

morning joint stiffness and pain
standing with eyes closed, lose balance - I'm in a wheelchair, but I did before that 9 years ago.
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 - at times in past
tinnitus - ringing in ears -
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
sleep disorders
non restorative sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations of taste
roughening and increased raspiness of voice, mb12 can smooth voice in mid word
blurring of vision - can be sudden onset and sudden return
Visual impairment - varied
intolerance to loud sounds
intolerance to multiple sounds
burning muscle pain
Bursitis
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 containing foods
nutrient specific anorexia
intermittent constipation
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to sounds and noises
Hypersensitivity to temperature changes
headaches
mucous becomes thick, jellied and sticky
chronic sinus congestion
dermatitis herpetiformis, chronic intensely burning itching rash
teeth sensitive to hot and cold
canker sores
lack of dreaming
metallic taste in mouth
Widespread body & muscle pain responding to NSAID
Joint pain responding to NSAIDS
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
erectile dysfunction men
limbs feel stiff
Drowsy
Clumsiness
Slow to adapt to night vision
Difficulty in word finding
demyelinated areas on nerves
unsteadiness of gait - when I walked
ataxic gait, particularly in dark - when i walked
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
decreased reflexes
brisk reflexes
Foot Drop
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
weight loss involuntary
muscular atrophy
exercise does not build muscle
mild to extremely severe fatigue
easy fatigability
severe abnormal muscle fatigue up to and including apparent paralysis
weakness
muscle pain especially around attachment points to bones
sore muscles throughout body
lack of muscle recovery after exercise
shortness of breath
oxygen hunger
heart palpitations
edema
extremely sore neck muscles
painfully tight, stiff muscles, especially neck, chest and arms
frequent muscle spasms anywhere in body
weak pulse
Difficulty in word finding
irritable
depression
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
anxiety or tension
nervousness
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@CaliObserver,

As you see from the list you are not alone. And for many of us, finding a balance of nutrients, and that can take several adjustments and trials, after getting methylfolate and potassium balanced. After methylfolate is adjusted to a best performance with no increase at the next increment (often bwetween 4-12mg.day, in at least 3 divided doses, and potassium is balanced out, and carnitine, most likely either ALCAR OR LCF will work best, and these things are all balanced, then amounts of MeCbl and AdoCbl can be adjusted relative to each other, to see the effect. Maximum body effect might very well require both Enzymatic Therapy MeCbl and Country Life Methyl B12 5mg in some balance. The maximum body MeCbl level might be between 10 and 15mg/day and that might include 2-5mg of AdoCbl (Anabol Naturals). The exact total and balance will depend upon your own results. It might vary for various sets of symptoms you have indicated.

Now the CNS effectiveness is a whole different ballgame. This whole business comes first because this is how you find all the cofactors. What put you in a wheelchair?
 
Messages
26
Location
UK
@CaliObserver I can relate to everything you describe. But, with MS, I've found sorting methylation is very important, but not always enough. Have you looked at david.wheldon.co.UK/ms-treatment.html and the cpnhelp.org site? Lots of us are making good progress on the antibiotic protocol. Methylation is helping me with the protocol and the protocol is helping me with methylation.
 
Messages
18
@celeste thanks for that I will look into it. I don't really believe I have MS. I think I was passed off as a quick, easy, cheap misdiagnosis. Most MS cases are relapsing/remitting. I cannot identify any remission or relapse.
 
Messages
26
Location
UK
@CaliObserver Given your symptoms, I think it's still well worth you looking at, even if you are not convinced about the diagnosis. Cpn bacteria is implicated in lots of these weird illnesses we seem to get. My diagnosis for the first 20 years of being I'll was ME. Wishing you luck.
 
Messages
18
@celeste interesting. I had pneumonia and was hospitalized for four days for it when I was 7 or 8. I was in hospital for a cellulitis infection a few years ago and it seemed like the antibiotics had a positive effect on my disease activity. The intense burning in my arms for 2 weeks after coming home showed me that was very toxic stuff.
 
Messages
26
Location
UK
@CaliObserver Yes, I had pneumonia aged 2. A lifetime of sinus infections and chest infections. Interstitial cystitis from age 14. Diagnosed with ME following EBV. Gluten intolerance, too. And probable MS for past 7 years. Cpn, for me, seems to have been the link between all of these. I always knew that I was wasn't just weak and feeble and unlucky - though the doctors would have preferred me to believe that. Much like treating Lyme, the antibiotic protocol can be challenging. Sorting methylation has been vital in helping me continue with the antibiotics. Heading in the right direction now though, with good glimmers of hope. Hoping the info might help you.
 
Messages
18
@CaliObserver Yes, I had pneumonia aged 2. A lifetime of sinus infections and chest infections. Interstitial cystitis from age 14. Diagnosed with ME following EBV. Gluten intolerance, too. And probable MS for past 7 years. Cpn, for me, seems to have been the link between all of these. I always knew that I was wasn't just weak and feeble and unlucky - though the doctors would have preferred me to believe that. Much like treating Lyme, the antibiotic protocol can be challenging. Sorting methylation has been vital in helping me continue with the antibiotics. Heading in the right direction now though, with good glimmers of hope. Hoping the info might help you.
Besides the pneumonia as a child and cellulitis a few years ago I have not had any infections or medical problems at all. I lived in Ohio until I moved to California at 16, and I was "required" to get the Hep. B vaccine to enter school. That was not required in Ohio. I see that as a potential trigger of my condition as minor symptoms started popping up shortly after that. I do always have a hanky as I have an intermittent chronic runny nose.
 
Last edited:
Messages
18
@CaliObserver,

As you see from the list you are not alone. And for many of us, finding a balance of nutrients, and that can take several adjustments and trials, after getting methylfolate and potassium balanced. After methylfolate is adjusted to a best performance with no increase at the next increment (often bwetween 4-12mg.day, in at least 3 divided doses, and potassium is balanced out, and carnitine, most likely either ALCAR OR LCF will work best, and these things are all balanced, then amounts of MeCbl and AdoCbl can be adjusted relative to each other, to see the effect. Maximum body effect might very well require both Enzymatic Therapy MeCbl and Country Life Methyl B12 5mg in some balance. The maximum body MeCbl level might be between 10 and 15mg/day and that might include 2-5mg of AdoCbl (Anabol Naturals). The exact total and balance will depend upon your own results. It might vary for various sets of symptoms you have indicated.

Now the CNS effectiveness is a whole different ballgame. This whole business comes first because this is how you find all the cofactors. What put you in a wheelchair?

Yes indeed I see. So this isn't just easy? :) Yesterday and today I was dealing with very intense upper back pain toward the early evening. Coincidentally I took ALCAR instead of LCF this morning so I wonder if that had any bearing on the added pain these two days. Fortunately my package had just arrived so I tried my last 400 mg of potassium for the day as potassium gluconate water which has very little taste. I had 800 mg two days ago 1000 mg yesterday and 1200 mg today. I wanted to work up slowly so that I don't go hyperkalemic. I expect I will probably arrive at 2000 mg or more because of my 3.9 potassium level. I had only the methylfolate in my Douglas B complex yesterday and today, so 800 mcg in two caps. I noticed in my experiments that if I take too much methylfolate my hands go weak and it can last the rest of the day if I take too too much (2000mcg+). My hands have done pretty well yesterday and today at the 800mcg level. I will try 400mcg more tomorrow and 200mg more potassium. Did you know that Metafolin are chewable and tasty so I will just bite off half an 800mcg? Methylcobalamin (Enzy) makes me sleepy usually but it seems tolerated fine. Adenosylcobalamin (Anabol) has no noticeable effect for me.

Can anyone comment on the effectiveness of the new Anabol sublingual? I looked up the half-life of carnitine, and found LCF's is 17 hours but ALCAR's is 4 hours. How much ALCAR or LCF do you take and do you take it more than once per day? Are there other comments about that based on the half-life?

I have a few new things to try adding one at a time. The Thorne Basic Nutrients 2/Day will likely be first. Next I am excited to add lithium orotate because I read that it helps with absorption of B-12 and methylfolate and I just received the results of my hair elements test and my lithium is very low. The other new arrivals are extended cofactors such as NOW sunflower lecithin and D-ribose.
 
Messages
18
I haven't been eating bananas because when I last did a few weeks ago it made me weaker. I noticed yesterday when I tried them again that a half a banana made my back tense and sore within a couple minutes on two separate occasions but not feeling weak like before. This was a very odd effect so I had to try it again. Half a banana this morning before LCF (I switched back.) did not have that effect on me. I've just had another half and it did. I think it is a potassium situation so I am about to drink my first 400 mg for the day to you see if it is relieved. It seems weird that a high potassium food would drive hypokalemia symptoms.
 
Messages
62
@CaliObserver I can relate to everything you describe. But, with MS, I've found sorting methylation is very important, but not always enough. Have you looked at david.wheldon.co.UK/ms-treatment.html and the cpnhelp.org site? Lots of us are making good progress on the antibiotic protocol. Methylation is helping me with the protocol and the protocol is helping me with methylation.
I have active CPn as well and have been doing the Wheldon/Stratton protocol. My symptoms are CFS like rather than MS. But I was finding it more and more difficult to tolerate the antibiotics...... The combination of the meds and the die off and my inability to detox made for a miserable existence . So I stopped the abx and have been working hard at the methylation for the past few months. The down side of that is that the CPn is very evident with respiratory symptoms +++. The interesting thing is, though, that I am increasingly feeling hot and shivery, and as though I am finally fighting an infection! rather than letting it just simmer with out me putting up a fight. I would like to hope that improving methylation, and there fore my immune function, would mean that I will. to need any more abx to clear up the infection.......... But we shall see. I have had CPn for at least 35 years.
 
Messages
18
I made a realization today. After lunch, I forgot to take my second B complex capsule. When I remembered about an hour later, I took it, and my arms started twitching shortly after. I have learned to recognize this as a symptom of hypokalemia and start up. My Douglas Laboratories B-Complex has 50 mg of B1 and B3, so perhaps I need to look at taking only one per day. I will trial that for a few days. @Freddd what do you do these days for your Bs?