B12 Documentary
- Thread starter arx
- Start date
PointsNorth
Paulo
- Messages
- 60
- Location
- LeftCoast Canada
AWSOME. Thx Arx. Do you have a link for us?
The YouTube video has been embedded. Is it not visible on the post?
Here's the link anyways: http://www.youtube.com/watch?feature=player_embedded&v=BvEizypoyO0
Thanks for posting this. I have been struggling to get correct treatment for b12 deficiency since July. I am fairly certain mine was masked for some time because of high folate.
In the beginning, I went to the ER on two separate occasions for dizziness and hearing loss and they told me to take Dramamine and drink more Gatoraid and that everyone who comes in here complains about fatigue. My symptoms progressed and finally on the 3rd visit, they ordered blood work and my red cell size was off the charts as well as other indicators. I got a letter in the mail a week later from my HMO telling me to immediately start taking b12 and folic acid. By this time neurological damage had been done.
Unfortunately, nerve damage has occurred and by the time an actual b12 serum test was done, my b12 levels " were in range" Still have the macrocytosis, and finally after a three month wait, had an appointment with a neurologist. Waiting on more follow up.
I decided to research and had 23andme testing. No surprise that I'm ++ on several important b12 methylation SNP's. It's still new to me and from this point on, I will proactively look out for me and tell the so called allopathic experts what they need to know about b12. The neurologist had no clue about the snp's and wouldn't even look at them. After I get the MRI results, I'm going to write the HMO an informative letter about their failure to provide timely services and lack of qualified MD's. Don't get mad, get even!
In the beginning, I went to the ER on two separate occasions for dizziness and hearing loss and they told me to take Dramamine and drink more Gatoraid and that everyone who comes in here complains about fatigue. My symptoms progressed and finally on the 3rd visit, they ordered blood work and my red cell size was off the charts as well as other indicators. I got a letter in the mail a week later from my HMO telling me to immediately start taking b12 and folic acid. By this time neurological damage had been done.
Unfortunately, nerve damage has occurred and by the time an actual b12 serum test was done, my b12 levels " were in range" Still have the macrocytosis, and finally after a three month wait, had an appointment with a neurologist. Waiting on more follow up.
I decided to research and had 23andme testing. No surprise that I'm ++ on several important b12 methylation SNP's. It's still new to me and from this point on, I will proactively look out for me and tell the so called allopathic experts what they need to know about b12. The neurologist had no clue about the snp's and wouldn't even look at them. After I get the MRI results, I'm going to write the HMO an informative letter about their failure to provide timely services and lack of qualified MD's. Don't get mad, get even!
There are many symptoms of B12 deficiency that correlate to ME/CFS. In addition to the crushing fatigue,
OI, PEM, susceptibility to infections; even brain fog can be considered to be a neurological symptom.
With any condition(s), there is also a comorbidity. I believe B12 deficiency is an important aspect of ME/CFS.
OI, PEM, susceptibility to infections; even brain fog can be considered to be a neurological symptom.
With any condition(s), there is also a comorbidity. I believe B12 deficiency is an important aspect of ME/CFS.
Wayne
Senior Member
- Messages
- 4,663
- Location
- Ashland, Oregon
Thanks much for posting this Arx! 
The video is almost an hour long, but the first two minutes are quite compelling, and I think well worth the two minute investment in time and energy. -- The Pernicious Anemia Society was mentioned in the video, and I thought I would post a link to their website: ------ Pernicious Anemia Society
On the first page of the website is a list of B-12 deficiency symptoms:
Common/early symptoms
The video is almost an hour long, but the first two minutes are quite compelling, and I think well worth the two minute investment in time and energy. -- The Pernicious Anemia Society was mentioned in the video, and I thought I would post a link to their website: ------ Pernicious Anemia SocietyOn the first page of the website is a list of B-12 deficiency symptoms:
Common/early symptoms
- Shortness of breath – ‘the sighs’
- Extreme fatigue
- Brain fogs
- poor concentration
- short-term memory loss
- confusion (‘handbag in the fridge syndrome’)
- nominal aphasia (forgetting names of objects)
- Clumsiness/lack of coordination
- Brittle, flaky nails; dry skin anywhere on body
- Mood swings, ‘tear jags’, heightened emotions
- Imbalance:
- dizzy/faint
- 'shoulder bumps’ – frequently bumping into or falling against walls
- general unsteadiness, especially when showering and dressing
- inability to stand up with eyes closed or in the dark
- Numbness/tingling – especially in hands, arms, legs, feet
- Tinnitus – nerve damage in the brain
- Irritability/frustration/impatience; desire for isolation, quiet and peace; aversion to bright lights and crowded spaces
- Unaccountable and sudden diarrhoea often reported following a spell of constipation
- Sleep disturbance
- even though patient is exhausted, is unable to sleep
- waking up still tired, even after many hours sleep
- Hair loss – can range from moderate to severe; premature greying of hair
- Poor digestion
- Burning legs and feet – Grierson-Gopalan Syndrome
- Neuropathic pain/fibromyalgia – often on only one side of the body
- Vertigo – inability to cope with heights, linked to the need for a visual reference as compensation for damage to the brain’s balance mechanism
- Hypo- or hyper-thyroidism – almost exclusively among females
- Psoriasis/eczema/acne
- Rosacea – a reddening of the skin around the nose and cheeks
- Arrhythmia – irregular, fast or slow heartbeat
- Rheumatoid Arthritis
- Coeliac disease – sensitivity to wheat and/or wheat products
- Myasthenia Gravis – weak muscles leading to problems swallowing, chewing and opening eye(s)
- Vitiligo – white patches that develop on the skin
- Psoriatic Arthritis
Wayne
Senior Member
- Messages
- 4,663
- Location
- Ashland, Oregon
A quick note on B-12 TESTING: I've heard that when test results for B-12 levels come back, that doctors will often ignore levels that are low to normal, even when the clinical symptoms clearly indicate B-12 deficiency. Some progressive doctors consider "normal" readings to reflect the average that is in our populations, and definitely NOT OPTIMAL. When they treat people with normal readings with B-12 supplementation, their deficiency symptoms often go away.
Dreambirdie
work in progress
- Messages
- 5,569
- Location
- N. California
thanks Arx. I am eager to watch this.
I watched the whole 51 minutes--wel worth it! They did say at one point that current test ranges are for pernicious anemia, NOT neurological symptoms or common deficiency.
Dreambirdie
work in progress
- Messages
- 5,569
- Location
- N. California
Which specific B12 tests do they find to be critical to get an accurate diagnosis?
They mentioned high methylmalonic acid and homocysteine as being important to test as well.
Sushi I know you've had B12 injections--which tests did you get to find your deficiency?
They mentioned high methylmalonic acid and homocysteine as being important to test as well.
Sushi I know you've had B12 injections--which tests did you get to find your deficiency?
Sushi
Moderation Resource Albuquerque
- Messages
- 19,973
- Location
- Albuquerque
Dreambirdie
work in progress
- Messages
- 5,569
- Location
- N. California
Thank you, Sushi.
I really need to do that methylation panel...
(she says digging through her wallet to find that extra cash)
Xara
Senior Member
- Messages
- 135
- Location
- The Netherlands
I am sorry to respond this late. I knew about the documentary and I just did not look into this thread any further.
Maybe some of you would like some extra information. I know a bit about it.
I have been ill for over twenty years. Several health issues. Permanent damage to my nerves may have been done, because so many years passed before I got the right treatment.
I am B12 deficient. I was only tested last year. My blood showed a B12-value of 119 pmol/l.
I think labs around the world usually consider a total B12 serum level < 150 pmol/l (in adults!) as deficient. Low levels between 150-250 pmol/l are often regarded as: ‘might have a B12 deficiency issue’. But these values differ from country to country, lab to lab and sometimes even doctor to doctor.
Active-B12 (Holo-TC) is regarded as a better test to determine your B12 level. I did not get an active B12 test.
My homocystein was elevated as well BTW.
A big problem with B12 deficiency is that as soon as you’re taking a B12 supplement, the active B12 (Holo-TC) test, the total B12 serum test, and the tests for homocystein and MMA (or uMMA) are affected, they may show your values are perfect - without the B12 supplement they would/could be far from it.
Of course you could stop your B12 supplement, but it can take six months or so before levels have returned to their old value - at least that’s what I’ve read. If you’re B12 deficient it would not be a good idea to wait for 6 months because in the meantime you could get permanent neural damage.
But if you have not taken any B12 supplement yet, and suspect you’re B12 deficient it would be wise to head for a doctor at once, and do some simple tests.
Btw homocystein should be done on an empty stomach (no drink or food within twelve(!) hours of testing).
But please, do check the information I’m giving here.
B12 deficiency can cause many, many symptoms because the insulating material surrounding the nerves, myelin, is affected.
Bead dog, Crux and Wayne have already mentioned some B12 deficiency symptoms.
I want to add another list. It’s my translation of a Dutch site, made by a man whose wife is in a wheelchair because doctors did not know or denied that she was B12 deficient.
Here’s another list of symptoms that are possible when being B12-deficient, in order of occurrence:
- Fatigue (sometimes extremely fatigued, quite often when awakening in the morning and getting up; having no energy)
- Glossitis (painful tongue, thick tongue, smooth tongue, especially when eating sharp and spicy food, acid drinks and when brushing teeth; inflamed and/or bleeding gums; iron-/metal taste)
- Aphtha
- Weird feeling in feet (feeling of walking on felt, batting or small pads/cushions, disturbance of feeling the surface, burning feeling on the skin)
- Psychological problems (irritability, having a short fuse, mood changes, being unreasonable, severe psychological complaints, panic attacks and suicidal behavior)
- Concentration and memory problems (unable to think clearly, brain fog, drowsiness/grogginess)
- Tingling sensations (in feet + hands, and later in legs, arms, and face too, being wired like electricity is flowing through the body; ants walking; also feeling numb in hands and feet, trembling hands, functional losses
- Dizziness
- Sleepiness (needing lots of sleep, falling asleep spontaneously)
- Tightness of the chest (anginous pains, palpitations, heart rhythm disturbances, rapid heart beat, shortness of breath)
- Feeling cold (sometimes having a burning sensation on the skin as well)
- Feeling of having heavy and stiff legs
- Aching muscles (muscular pain after exertion is worse than it used to be, sometimes muscle cramps as well, muscle weakness, loss of strength)
- Fasciculations/myokymias (muscle trembling, contraction of a small part of a muscle, unvoluntary moves, restless legs)
- Pain (among other things: in back, hands, wrists, hips and knees)
- Infections in digestive tract (even intestinal perforation)
- Nausea (loss of appetite, uneasy feeling in stomach area, underweight)
- Intestinal complaints, diarrhoea/constipation (with some regularity)
- Ataxia (unsteady walk, the walk of a drunk, not being able to walk at all)
- Diminished sense of position (falling inexplicably, or letting something just drop out of your hands)
- Anomalous reflexes
- Weight loss (loss of appetite, loss of taste/smell)
- Aphasia (having trouble speaking, using the wrong words, not being able to find the correct word, less control over tongue and mouth when talking, “keyboard aphasia”)
- Anaemia, sometimes just a bit, more often not present (passing out/fainting, dry skin, itching, paleness, yellow colored skin + white of the eye, hyperpigmentation, unprompted bruises, petechia, orthostatic hypotension)
- Eye problems (optic neuropathy, hazy sight, loss of sight/visual field)
- Ear problems (tinnitus, distorted sound)
- Hair loss, brittle nails
- Hypertonic bladder (uncontrollable urges to urinate)
- Headache/migraine/seizures
- Infections (elevated risk of vaginal and urinary tract infections)
- Menstrual problems (irregular, sometimes no menstruation, false positive PAP smear)
- Infertility/miscarriages, birth defects, loss of libido, impotence
- Dementia (loss of memory)
Source:
http://home.kpn.nl/hindrikdejong/symptoom.htm
If you don’t trust my humble translating attempt, do read the Google translation:
http://translate.google.com/translate?sl=nl&tl=en&js=n&prev=_t&hl=nl&ie=UTF-8&eotf=1&u=http%3A%2F%2Fhome.kpn.nl%2Fhindrikdejong%2Fsymptoom.htm
There’s more on that page, including a picture of a typical smooth tongue, so if you’re interested, use the Google translate link.
It’s an excellent site, lots of information about diagnose, causes, treatment, children with B12, etc., bit chaotic perhaps, and alas, all in Dutch.
I found the information provided by the Pernicious Anaemia Society a bit meagre in comparison, so I searched for other sites in the English language.
I found
http://b12d.org/
It seems to have extensive and detailed information, but I have not looked into it for long, so I don’t know how up to date it is.
BTW standard treatment in my country consists of muscular injection twice a week with HydroxoB12 1 mg for ten weeks at least, after that one can decrease the frequency providing a minimum of one injection every two months - in case no cause has been found or if the cause of the B12 deficiency can not be solved (i.e. cured).
After supplementing B12, either orally or via injection, serum levels do not say anything about whether one’s getting too much. So a doctor may not decide upon these values to stop a treatment. The only thing high values say is that one IS supplementing. Period. A patient/doctor has to look at the symptoms, the symptoms should be the guide in deciding when to lower the dose or frequency.
I hope this was of help to someone.
Maybe some of you would like some extra information. I know a bit about it.
I have been ill for over twenty years. Several health issues. Permanent damage to my nerves may have been done, because so many years passed before I got the right treatment.
I am B12 deficient. I was only tested last year. My blood showed a B12-value of 119 pmol/l.
I think labs around the world usually consider a total B12 serum level < 150 pmol/l (in adults!) as deficient. Low levels between 150-250 pmol/l are often regarded as: ‘might have a B12 deficiency issue’. But these values differ from country to country, lab to lab and sometimes even doctor to doctor.
Active-B12 (Holo-TC) is regarded as a better test to determine your B12 level. I did not get an active B12 test.
My homocystein was elevated as well BTW.
A big problem with B12 deficiency is that as soon as you’re taking a B12 supplement, the active B12 (Holo-TC) test, the total B12 serum test, and the tests for homocystein and MMA (or uMMA) are affected, they may show your values are perfect - without the B12 supplement they would/could be far from it.
Of course you could stop your B12 supplement, but it can take six months or so before levels have returned to their old value - at least that’s what I’ve read. If you’re B12 deficient it would not be a good idea to wait for 6 months because in the meantime you could get permanent neural damage.
But if you have not taken any B12 supplement yet, and suspect you’re B12 deficient it would be wise to head for a doctor at once, and do some simple tests.
Btw homocystein should be done on an empty stomach (no drink or food within twelve(!) hours of testing).
But please, do check the information I’m giving here.
B12 deficiency can cause many, many symptoms because the insulating material surrounding the nerves, myelin, is affected.
Bead dog, Crux and Wayne have already mentioned some B12 deficiency symptoms.
I want to add another list.
It’s my translation of a Dutch site, made by a man whose wife is in a wheelchair because doctors did not know or denied that she was B12 deficient.Here’s another list of symptoms that are possible when being B12-deficient, in order of occurrence:
- Fatigue (sometimes extremely fatigued, quite often when awakening in the morning and getting up; having no energy)
- Glossitis (painful tongue, thick tongue, smooth tongue, especially when eating sharp and spicy food, acid drinks and when brushing teeth; inflamed and/or bleeding gums; iron-/metal taste)
- Aphtha
- Weird feeling in feet (feeling of walking on felt, batting or small pads/cushions, disturbance of feeling the surface, burning feeling on the skin)
- Psychological problems (irritability, having a short fuse, mood changes, being unreasonable, severe psychological complaints, panic attacks and suicidal behavior)
- Concentration and memory problems (unable to think clearly, brain fog, drowsiness/grogginess)
- Tingling sensations (in feet + hands, and later in legs, arms, and face too, being wired like electricity is flowing through the body; ants walking; also feeling numb in hands and feet, trembling hands, functional losses
- Dizziness
- Sleepiness (needing lots of sleep, falling asleep spontaneously)
- Tightness of the chest (anginous pains, palpitations, heart rhythm disturbances, rapid heart beat, shortness of breath)
- Feeling cold (sometimes having a burning sensation on the skin as well)
- Feeling of having heavy and stiff legs
- Aching muscles (muscular pain after exertion is worse than it used to be, sometimes muscle cramps as well, muscle weakness, loss of strength)
- Fasciculations/myokymias (muscle trembling, contraction of a small part of a muscle, unvoluntary moves, restless legs)
- Pain (among other things: in back, hands, wrists, hips and knees)
- Infections in digestive tract (even intestinal perforation)
- Nausea (loss of appetite, uneasy feeling in stomach area, underweight)
- Intestinal complaints, diarrhoea/constipation (with some regularity)
- Ataxia (unsteady walk, the walk of a drunk, not being able to walk at all)
- Diminished sense of position (falling inexplicably, or letting something just drop out of your hands)
- Anomalous reflexes
- Weight loss (loss of appetite, loss of taste/smell)
- Aphasia (having trouble speaking, using the wrong words, not being able to find the correct word, less control over tongue and mouth when talking, “keyboard aphasia”)
- Anaemia, sometimes just a bit, more often not present (passing out/fainting, dry skin, itching, paleness, yellow colored skin + white of the eye, hyperpigmentation, unprompted bruises, petechia, orthostatic hypotension)
- Eye problems (optic neuropathy, hazy sight, loss of sight/visual field)
- Ear problems (tinnitus, distorted sound)
- Hair loss, brittle nails
- Hypertonic bladder (uncontrollable urges to urinate)
- Headache/migraine/seizures
- Infections (elevated risk of vaginal and urinary tract infections)
- Menstrual problems (irregular, sometimes no menstruation, false positive PAP smear)
- Infertility/miscarriages, birth defects, loss of libido, impotence
- Dementia (loss of memory)
Source:
http://home.kpn.nl/hindrikdejong/symptoom.htm
If you don’t trust my humble translating attempt, do read the Google translation:
http://translate.google.com/translate?sl=nl&tl=en&js=n&prev=_t&hl=nl&ie=UTF-8&eotf=1&u=http%3A%2F%2Fhome.kpn.nl%2Fhindrikdejong%2Fsymptoom.htm
There’s more on that page, including a picture of a typical smooth tongue, so if you’re interested, use the Google translate link.
It’s an excellent site, lots of information about diagnose, causes, treatment, children with B12, etc., bit chaotic perhaps, and alas, all in Dutch.
I found the information provided by the Pernicious Anaemia Society a bit meagre in comparison, so I searched for other sites in the English language.
I found
http://b12d.org/
It seems to have extensive and detailed information, but I have not looked into it for long, so I don’t know how up to date it is.
BTW standard treatment in my country consists of muscular injection twice a week with HydroxoB12 1 mg for ten weeks at least, after that one can decrease the frequency providing a minimum of one injection every two months - in case no cause has been found or if the cause of the B12 deficiency can not be solved (i.e. cured).
After supplementing B12, either orally or via injection, serum levels do not say anything about whether one’s getting too much. So a doctor may not decide upon these values to stop a treatment. The only thing high values say is that one IS supplementing. Period. A patient/doctor has to look at the symptoms, the symptoms should be the guide in deciding when to lower the dose or frequency.
I hope this was of help to someone.