Let me start out by saying that I don't have ME/CFS. But I have something that resembles some aspects of ME/CFS, and it's not MS, so I've spent a lot of time reading the forums here.
In 2003, I began experiencing exhaustion, post-exertional fatigue attacks, daily "slowdowns" around 5PM, tingling, fuzzy "tip-of-my-tongue" memory, occasional breathlessness, mild chemical sensitivity, and brain fog. When I feel asleep while waiting for a doctor, she tested my B12, and it came out around 300. I began taking methylcobalamin sublinguals, and my serum B12 levels climbed to over 1000. Later I added adenosylcobalamin and hydroxycobalamin sublinguals and drops. Sublingual B12 was the first thing that helped me, but it did not cure me.
Over the past 15 years, I've tried an insane number of different supplements and diets. I've checked my genes and taken many tests (an MRI showed that I don't have MS). Reading about health and watching online lectures has become my main hobby (hello PhoenixRising!). I take a packet with a couple of dozen tablets and gelcaps each day to keep the worst symptoms at bay: methylfolate, Bs, vit D, minerals, NR. Many things helped a little. Along the way, I've found a couple of standouts that help reverse a slowdown (fatigue attack): potassium citrate or potassium gluconate in water, and Allithiamine capsules.
This summer, I read that B12 serum levels will rise after supplementation, but the serum level may not reflect the body's intracellular B12 status. I have normal (>500) serum b12, normal serum MMA, normal homocysteine (<8), no macrocytosis, no anemia, a normal Spectracell B12. Absolutely no sign of a functional B12 deficiency on paper. However... since my symptoms resemble the neurological effects of low B12, I called around and discovered that my doctor offers 5mg methylB12 shots for $35. Weight-loss clinics in my area also offer 1mg Hydroxycobalamin for about the same price. Hey, only experiment number 2,428 over the past 15 years, worth a try for $35.
And... that was it. My first methylB12 shot resulted in a headache, metallic taste, chills, visual-field sharpening, and the lessening of my exhaustion for a few hours. Went in for another shot a week later, and this time the fatigue lifted for almost a day, and the headache went away faster. Six shots and a couple of months later, I am feeling a thousand percent better. I've even jogged a little... ran, if you can believe it. My tingling is gradually fading. My memory is sharper and my mood is brighter.
Against all odds, and despite all my normal B12 blood test results, injected (not sublingual) B12 is working to heal my brain and peripheral nerves.
$35/shot adds up. A couple of weeks ago I bought a 100-pack of 1mg hydroxycobalamin "Rotexmedica" ampules online from goldpharma.cn for $83. Rotexmedica is a German company, and the ampules were shipped from a German pharmacy. 1mg hydroxy isn't as strong as 5mg methyl, but it's easier and cheaper to give at home. I've self-administered two shots so far, the latest tonight after a slowdown. 10 minutes later, I'm feeling sharp and normal again. It's been five days since my first self-administered shot, so I guess that's how long 1mg B12 lasts for me right now.
So that's my story. If anyone has any idea why injected B12 would work on my brain and nervous system despite having normal blood tests, I'm all ears.
In 2003, I began experiencing exhaustion, post-exertional fatigue attacks, daily "slowdowns" around 5PM, tingling, fuzzy "tip-of-my-tongue" memory, occasional breathlessness, mild chemical sensitivity, and brain fog. When I feel asleep while waiting for a doctor, she tested my B12, and it came out around 300. I began taking methylcobalamin sublinguals, and my serum B12 levels climbed to over 1000. Later I added adenosylcobalamin and hydroxycobalamin sublinguals and drops. Sublingual B12 was the first thing that helped me, but it did not cure me.
Over the past 15 years, I've tried an insane number of different supplements and diets. I've checked my genes and taken many tests (an MRI showed that I don't have MS). Reading about health and watching online lectures has become my main hobby (hello PhoenixRising!). I take a packet with a couple of dozen tablets and gelcaps each day to keep the worst symptoms at bay: methylfolate, Bs, vit D, minerals, NR. Many things helped a little. Along the way, I've found a couple of standouts that help reverse a slowdown (fatigue attack): potassium citrate or potassium gluconate in water, and Allithiamine capsules.
This summer, I read that B12 serum levels will rise after supplementation, but the serum level may not reflect the body's intracellular B12 status. I have normal (>500) serum b12, normal serum MMA, normal homocysteine (<8), no macrocytosis, no anemia, a normal Spectracell B12. Absolutely no sign of a functional B12 deficiency on paper. However... since my symptoms resemble the neurological effects of low B12, I called around and discovered that my doctor offers 5mg methylB12 shots for $35. Weight-loss clinics in my area also offer 1mg Hydroxycobalamin for about the same price. Hey, only experiment number 2,428 over the past 15 years, worth a try for $35.
And... that was it. My first methylB12 shot resulted in a headache, metallic taste, chills, visual-field sharpening, and the lessening of my exhaustion for a few hours. Went in for another shot a week later, and this time the fatigue lifted for almost a day, and the headache went away faster. Six shots and a couple of months later, I am feeling a thousand percent better. I've even jogged a little... ran, if you can believe it. My tingling is gradually fading. My memory is sharper and my mood is brighter.
Against all odds, and despite all my normal B12 blood test results, injected (not sublingual) B12 is working to heal my brain and peripheral nerves.
$35/shot adds up. A couple of weeks ago I bought a 100-pack of 1mg hydroxycobalamin "Rotexmedica" ampules online from goldpharma.cn for $83. Rotexmedica is a German company, and the ampules were shipped from a German pharmacy. 1mg hydroxy isn't as strong as 5mg methyl, but it's easier and cheaper to give at home. I've self-administered two shots so far, the latest tonight after a slowdown. 10 minutes later, I'm feeling sharp and normal again. It's been five days since my first self-administered shot, so I guess that's how long 1mg B12 lasts for me right now.
So that's my story. If anyone has any idea why injected B12 would work on my brain and nervous system despite having normal blood tests, I'm all ears.
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