Freddd - thanks for these suggestions, but we've been through what I'm taking on another thread. 5mg Jarrow Mb12, 2 hours under tongue taken with 8mg metafolin. I've taken these for three months, with no change. I don't take any supplements with folic or folinic acid.
Out of your long list of symptoms, I only have a few: muscle and joint pain, rapid heartbeat, palpitations and arythymias, dizziness, severe exhaustion and weakness, constant flu/malaise feelings, probs with temp control. I'm not sure of the point of this long list - many of these are symptoms of a whole range of other illnesses. And how many does one need to have for a diagnosis of B12 deficiency? Are there some which are key, and others not so important?
I suspect that some people with ME have your B12 deficiency condition but many don't.
ottiebow - sorry to hijack your thread! I improved a bit after about 6 weeks of weekly B12 injections. I've been having them now for about 8 months. My consultant suggested continuing for another 6 months at least.
Hi Jenny,
Your situation is rare but an opportunity to for me to learn something if you will bear with me and answer some more questions. You are the second person I've discussed this with in the thousands that have tried various forms of cobalamins that has reported this greater effectiveness of hycbl injections. There is ALWAYS a reason, but sometimes the reason(s) can be difficult to understand. This is a learning situation.
Since you have a response to b12 that is considered definitive as to having b12 deficidency symptoms. People without symptoms don't respond.
I'm not sure of the point of this long list - many of these are symptoms of a whole range of other illnesses
And right there you point out the difficulty of recognizing b12 deficiency. A nurse wrote a book, B12 DEFICIENCY CAN BE HARD TO DIAGNOSE and she explains why. It is usually diagnosesd as many many other named diseases. It has no unique symptoms. Instead it has hundreds of symptoms that overlap many many other disorders. All those symptoms are b12 deficiency symptoms. The list is sizable becasue it is the combination of severl lists, some USA lists, a country that based b12 deficiency diagnosis on cyanocbl, the UK using Hycbl, Canada, Auastralia, New Zealand (English speaking with a mix of cobalamins used), India (English based medical literature) with a fair amount of mb12 usage and Japan, with mb12 usage and a sizable body of research on mb12 and neurological disease and the highest "low" level in the world, 550pg/ml. Then things that are dismissed with one line, ie peripheral neuropathy being expanded to many symptoms of peripheral neuropathy, and muscle pain broken down into many kinds of muscle pains, all as reported by people as having responded to various b12s and cofactors.
Out of your long list of symptoms, I only have a few: muscle and joint pain, rapid heartbeat, palpitations and arythymias, dizziness, severe exhaustion and weakness, constant flu/malaise feelings, probs with temp control
So for instance, under muscle pain on the list there are many different muscle pains. These variations allow progressions to be seen, and deifferent ones have one or more different causes. Below are what appear to be relevant categories with more detail than you provide. Can you indicate which ones of these apply to your symptoms and if there is a better description not included could you include that please. Wpuld you also please indicate how hycbl has affected each of the symptoms you have?
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
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
exercise intolerance
paleness
rapid heart rate
heart arythymias
shortness of breath
heart palpitations
weak pulse
congestive heart failure
arteriosclerosis
dizziness - even unable to walk
dizziness - even unable to stand
vertigo
ataxia
ataxic gait only in dark or eyes closed
unsteadiness of gait
fall right over with eyes closed
Are there some which are key, and others not so important?
Not really. As they are ALL symptoms of other things as well, it's the pattern of symptoms, groupings from various body systems, that end up pointing at b12 deficiency. Some symptoms are more severe or dangerous or life impacting and others are very common and relatively benign in themselves. Dandruff isn't considered an earthshaking disease BUT it does indicated a certain type of malfunction in epithelial tissues. The traditional triad of symptoms is:
1- "Beef red" burning tongue
2 - Abnormal fatigue
3 - Tingling in hands and/ot feet
The reason this was effective at diagnosing b12 deficiency is that it is 3 symptoms, each from a different category. So there is an epithelial breakdown, a neurological breakdown and mitochondria malfunction. The burning red tongue doesn't make an apperance until a person is in really bad trouble and all by itself is going to shout severe b12 and/or folate deficiencies. Typically people have a multitude of symptoms across at least 3 different systems in the body, ie epithlial tissues, neurological and mitochondrial. However, it has to start somewhere. There is a "first symptom" that just isn't diagnopsable except by trial and even then might not respond because it needs mb12 and zinc or something loke that. A person with 200 symptoms of every kind is a slam dunk. A person with 10 symptoms in 1 area is very questionable and across 2 areas looks possible. A person with 50 symptoms across 3 areas is almost always deficient. You have already demonstrated b12 deificiency so that is not at question
I have been working on a different model, one based on a combination of 5 deficiency patterns; adb12-body, adb12-CSF/CNS, mb12-body, mb12-CSF/CNS and methylfolate. Interestingly, the muscle pains alone have variations that point to each of the 5 deficiencies. Further in the b12-trial area, there are 4 different trials that can be done, of which you have tired one. There is one trial for each type of deficiency. People can be independently responsive to each of the 4 deficiency patterns. So for instance, you tried an mb12-body but haven't done the other 3.
I suspect that some people with ME have your B12 deficiency condition but many don't.
I wouldn't bet on that. Do you have ME? You have demonstrated your b12 deficiency condition by responding to hycbl. My b12 deficiency conditions, all 4 of them, are not in doubt. What ME doesn't appear to point at is a body-mb12 deficiency, though it can be effective in some for various reasons, and that is the only one you have trialed along with folate.
So the question arises, what can block mb12 responsiveness besides folic acid and folinic acid. The answer is inclusive of but not limited to, glutathione, NAC, whey, glutathione precursors and a fair number of drugs known and unknown. So Dilantin, Metaformin and others can be a problem. Are you taking any of these items?
What an injection (1000mcg IM presumed, is that correct?) of that type does is for a few minutes raise the serum level high enough to penetrate the CSF/CNS even in people with difficulty getting it in there.
I improved a bit after about 6 weeks of weekly B12 injections. I've been having them now for about 8 months. My consultant suggested continuing for another 6 months at least
You may find that you need them indefinitely to maintain improved condition. Does a hycbl sublingual have the same effectiveness for you? Have you tried them?
Would you be willing to try the other 3 trials? Two of them are single dose trials. After you get more detailed on the symptoms we can have a better idea.