I have been caring for my wife full time for several years now. We are both in our mid 70's and we have been together since our mid teens.
Her illness started with weight loss, anxiety and paranoia which was very out of character. The anxiety and paranoia became very serious and extreme, including at times verbal abuse that I can only describe as violent. Really horrendous.
I quickly realised that something was wrong and suspected at the time that it was related to nutrition, despite her eating good, natural food with lots of fruit and veg, salads etc. her illness became more severe. This developed into numbness in her hands legs and feet and 'pins and needles', often unable to feel her legs. Researching these symptoms I soon discovered that vitamin B12 malabsorbtion could be the cause of the symptoms.
Her symptoms continued to worsen, she became totally exhausted, lost her sense of balance, developed a shuffling gait, had pains in her joints (especially her arms), developed severe tremors in her arms and legs, in addition to what can best be described as a 'brain fog'. She also suffered from long spells of constipation followed by diarrhoea and many of the symptoms listed in the book 'Could It Be B12' by Sally Pacholok.
Private blood tests showed macrocytosis. A methylation profile (MTHFR) showed homozygous mutations referring to a difficulty absorbing B12 which was likely to have been present from birth.
After a difficult couple of years my wife is now unable to walk unaided. We have found that methyl cobalamin injections can be of help. (She is currently using 5mg every other day) along with transdermal B12 patches. I feel that because of the severity of her neurological symptoms she would benefit from increasing the amount and frequency and would like to hear from people about their experiences when increasing the frequency of the injections and also what dosages they use?
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45hillbilly
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So sorry to hear about what your wife is going through, glad you are there to help and take care of her. I too believe I've had B12 issues since birth, also have MTHFR issues and am still on the mission to sort out the root cause - just gone back on gluten for six weeks as have asked for a biopsy to see if I'm coeliac however I suspect my B12 issues are caused by a number of factors all combining to cause issues with B12 being transported around the body (aka functional B12 deficiency).
I believe my mother has similar issues and am managing to get her to have blood tests - her serum B12 came out as fairly high but she has daily issues with mental states - mood swings, paranoia, etc., movement, and is always cold. She's 77 now and currently suffering toilet issues so trying to get her to stop gluten altogether, and soya but she's still having slices of bread etc. so it's probably not helping.
My father's B12 came out as low, near the low range so got him taking sublingual B12 for a couple of months, then four months off then I'll get him to have another test as I think that's where my absorption problem comes from - he's having 6,000mcg tablet daily and feels absolutely no effect from it whatsoever. Doesn't display the same issues as my mum although he is lacking energy and has recently fallen over so I'm trying to help him before he gets to the point I got to last September when I experienced symptoms of subacute combined degeneration of the spinal cord and like your wife I couldn't hardly stand up, very wobbly gait, paranoid, memory of a fish.
Our NHS refused to inject me alternate days as according to the guidelines so after discovering this forum I decided to self-inject and have been injecting daily since last September. I haven't tried methyl, I'm injecting hydroxocobalamin and after researching and seeing others who inject more than once daily I first started twice daily but more recently I got up to four times - after a shower in the morning, lunchtime, dinner, and evening. I did that for a couple of months and felt it gave me a real boost. I am now back to once or twice a day due simply to the cost factor and I can manage through a day but there's no doubt I feel better when I inject more. I don't get "worse" by not injecting - I went a week without injecting a month or so back and was ok but didn't improve.
I think the thing is it's different for everyone, you find your level and that will change over time. If you feel you want more, inject more if you can - there's no upper limit as it's not toxic - I hear for cyanide poisoning they inject 5,000 times the amount!
One thing is to ensure you take cofactors, other B vitamins (but be careful of B6 not to take more than 10mg per day, I took double that and ended up with B6 toxicity so don't take it at all any more). Folate is essential too and best to get from leafy green veg - with MTHFR I understand folic acid is a no-no - I was taking methylfolate but I have to be careful with that too as I end up overmethylating so have cut back on that and only take it a couple of times a week now. Magnesium is another one, I have Doctor's Best high absorption which comes in 240 tablet bottles, I have one tablet in morning, lunch, dinner, then evening. I also had a Vitamin D deficiency which often goes with B12 deficiency so best to get that checked too - google vitamin d protocol, I follow that, started on 5,000IU daily but then went up to 20k now 30k - again it's all about finding your level - Vit K is essential also if you're taking lots of D (see the protocol). I'm on a few days off all supplements at the moment though as more blood tests - just spent the morning writing yet another letter to my doctor having to fight for tests as referrals and tests keep getting rejected.
Dr Ben Lynch has a good book "Dirty Genes" which helps show what is good for various genes, and Dr Myhill has some good info re diet and CFS (drmyhill.co.uk/wiki/CFS_-_T.... It's a minefield out there though, there's so much conflicting information - one says one thing is ok, another says it's bad. For example I ended up living basically off salads, steamed veg, seeds and almonds, now another one says the proteins in seeds could be the problem. It's tough but everyone's different so it's a case of trying and seeing what works for you. What I've found generally with the diet side though is as I read somewhere what you crave generally turns out to be the thing you've got an issue with. I took lots of pre-and-pro biotics when I was first ill and do think my issues are to do with yeast, that's a hard thing to get totally out of your system. Stress is a major factor on mine too, learning how to chill a bit more and trying to get out more - managed a cycle the other day but it wiped me out for the week. Not bad though as couldn't even pack a shopping bag a couple of months back!
Anyway I guess I'd better stop typing now! I wish you and your wife well, keep doing what you're doing and if you want more injections then do it. Of course I'm not a medically trained person so this is not official advise, I'm just an ill person trying to get better and help others on the way too if and where I can with knowledge and experiences I've gained over this past year.
• in reply to
...I also read from other people here if you're on methyl you also want some adenosylcobalamin - perhaps someone else will reply with more info otherwise search away!
Thank you very much for your thoughtful response and useful information. Apologies for my slow response, caring for my wife is full time and I'm very new to social media and its a steep learning curve for me.
I have reduced gluten in my wifes diet, its not easy as I get resistance at times. You say your mother has similar issues to my wife and her mother was very similar, although she is no longer with us. She had peripheral tremors, especially of the head as well as great difficulty walking (she could only shuffle around her home). I now suspect her problem was B12. She passed away at the age of 59, my wife was just 23 at the time. W ehad been courting for 7 years at that time and married soon after, hoping to ease my wifes sadness.
You said your Mum was has daily issues with mental states, mood swings and paranoia etc, the same was true of my wife at the onset of her condition. She would have sudden bursts of outrage, horrendous paranoia which became violent at times, slamming doors, accusing me of ridiculous things, locking me out and shouting in a state of extreme anger. Paranoia is referred to about 20 times in Sally Patcholoks book and is also seen frequently in other B12 deficiency documentation.
On two occassions home kit tests for coeliac showed negative, although it would seem that such tests can give a false result.
My wife, like your mother is often cold when room temperature or outside temperature is very warm.
There is just 3 years between between your Mum and my wife, it certainly seems that there is a huge problem that our health service is deliberately ignoring and being side stepped by G.P.s, who all too often seem to be blinded by the obvious and deaf to common sense.
Once again I'm sorry for the slow response, any information you can offer is most gratefully received.
Hiya - no worries about the response time - I'm online pretty much all the time so used to it. I started playing with computers when I was 9 (am 45 now) - all I remember is my parents arguing in the kitchen which was outside my window but there was this machine which I could control so I became engrossed in it. And that's where I think I've learned a lot lately - there's a 'healing trauma summit' on at the moment and I've watched a couple of the sessions which were really interesting - describing trauma as not the thing that happened to us but the trauma that we carry around in our minds that still affects us in the now because we haven't dealt with it or perhaps even recognised it exists. So when people 'lash out' it's often not the actual thing that's happening right then but a trigger of deep-rooted issues of fear of loss, fear of not being good enough, etc. that were ingrained in us many years previous. Whether it's "too late" to deal with those issues or not I don't know - for myself I'm extremely grateful for the time I have now to deal with it - at least I know what the issue is and can attend to it.
Obviously I can only speak from my own personal experience - everyone is different so will need to figure out what works for themselves but for me it's diet the number one thing to sort out. I'm currently back on gluten for six weeks as I have a biopsy to discover whether I am actually coeliac or not - I want to know but it's a nightmare, been back on gluten for nearly a couple of weeks and already put on a stone, running to the toilet every few mins and in pain but I really want to know as it's quite hard to cut all gluten out of your diet. I too have the same issues getting my mum to stop eating all gluten - it does take time but you have to try different stuff and find things you like that aren't harmful. My mum also has a fair amount of soya and that's one of the things people are allergic to (I think there's 7 main things like dairy etc. - google it).
The extra B12 injections help me too, I know you don't "need" as many as I do but it certainly helps at the moment especially whilst I'm still pushing uphill a lot trying to get out of my current living situation - 45 and camping out in my 81 year old dad's spare room and of course getting triggered every time he's around which has been keeping me down so I have to rise above that and get back on the road again as fast as possible, and for me high amounts of injecting B12 just works.
My mum got all upset the other day as again they missed out MMA and homocysteine blood tests then her haematologist's secretary phoned and apparently her platelet levels are still going up and when she said about blood clotting they said just go to A&E if anything happens and she thinks it would be too late by then. Then she was saying about not getting out and about and wishes she had a car again but there's stuff going on where she lives but she says about not being able to go out at night cos danger and I say about taxi then she says all booked up and you know it's just excuse after excuse I said you have to just do it. Like myself and getting out - if I don't go out no-one's gonna come round and pick me up, you are lucky you have each other although I understand how tough it is.
Just keep doing what you're doing and do the things that make the biggest difference, I have a feeling that due to our 'illnesses' being life-long there is no magic cure as although what may have started out as mental issues it's kinda shaped the way we are and we know no different world, we can only do what makes it easier to cope with and hope slowly things begin to improve, but at the end of the day the person themselves need to be the ones who have to change and want to change, getting off the foods that don't help will help but also it takes self-awareness and a want to improve both for ourselves and others.
Thank you for responding again. I am really new to computer stuff and so on, I've only sent a couple of emails in my life, so corresponding with you will help me. I never know if I'm doing this right, all I know is my dear wife is very ill with all these B12 deficient symptoms and it takes every thing I have to care for her, It,s exhausting. She is unable to do anything herself most of the time. Her neuropathy and total exhaustion is a huge problem, no energy even to feed herself or speak much of the time. We live quite isolated in the country. My dear wife wants me with her to hold and comfort her, which does calm her a little but it makes it difficult just to get meals. I wish someone could help
Do you know if it is possible to make personal [telephone discussion] contact with one or two people on this forum. I must get back to my struggling lady. p.s. Our G.P is oblivious to this dreadful illness. " Blinded by the obvious and deaf to common sense." Best wishes to you and thank you so much.
It is exhausting & the only thing that keeps me going is frequent injections, for example today I found it hard walking upstairs but then I injected and got a bit more energy. I think I have 'functional B12 deficiency' which is where there's issues with the B12 being transported around the body. I asked for a MMA (Methylmalonic Acid) and Homocysteine test but when my results came back from the lab they refused saying the B12 was high so ok, so I asked again and got the doc to note on the form that the B12 would be high due to self-injecting, this time it's come back with no homocysteine and the MMA as 'missing' but the sample is being sent for an 'Active B12' test. It doesn't matter how much B12 you have swimming around in your system, if it's not being used properly then you're going to have issues. If MMA and/or Homocysteine are raised then that means the B12 isn't being utilised properly hence why I asked for it. I found this page earlier which explains a little more about active B12 active-b12.com/what-is-acti...
As for phone calls, I'm not sure as I don't know the others on here but I can't even do phonecalls, my brain can't handle synchronous communication yet - typing is ok but my brain can't work fast enough to listen, comprehend, and respond!!! These forums I believe are part of the Pernicious Anaemia Society and if you join them (I believe it's £20 for a year) then there's access to their helpline for support - not used it myself as have zero income right now
There's also the book What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper who founded the Pernicious Anaemia Society - amzn.to/2ldcky5
MTHFR mutations have no effect whatsoever of B12 absorption. Some people (less than 10%] are homozygous for the C677T mutation and may benefit from supplementing with methylfolate. There’s a lot of rubbish about MTHFR on the net. Much of it originating from the medical school dropout Ben Lynch.
Methylcobalamin has no advantages over other types. Indeed, hydroxocobalamin and cyanocobalamin are cheaper, easier to source and more stable than methylcobalamin. If you do take methylcobalamin there is no requirement to take adenosylcobalamin as well. All forms of B12 are equivalent once they enter the cell as the first thing that happens is that the top ligand (methyl, cyano, etc.) is removed.
Using such high doses of B12 is almost certainly unnecessary. The body can only keep a certain level in he blood. Any excess is flushed out in the urine.
Does your wife eat plenty of meat and/or fish? It doesn’t need to be ‘natural’.
Has your wife actually been diagnosed with a B12 deficiency? There are a lot of other conditions that can cause similar symptoms. It would be unfortunate if you were spending a lot of effort and money on treating the wrong problem. Has she been checked for thyroid problems, diabetes, Vitamin D deficiency, iron deficiency, folate deficiency or many others?
Thank you very much for your interesting response. Sorry to take so long to reply, I will do so as soon as I possibly can, we need all the helpful thoughts, tips, ideas of avenues to explore etc.. I am new to social media and it's an uphill climb for me. I will respond with more information and answers to your questions very soon. A big thank you to you.
Hi Fbirder, I am thankful for your response and the time you put in your first reply.
We eat plenty of fish, red meat and eggs but also a lot of greens and fruit, and no it is not "all natural" sorry I used this incorrect expression.
Her first blood test showed that she had macrocytosis, the new blood tests show that she no longer has macrocytosis but we think this is due to supplementing together with folic acid fortified foods, like cereals and this probably "creates" a misleading diagnosis.
She is also hypothyroid and we think that this may be another indication of B12 not being utilized. She has in the past been diagnosed with Iron and vitamin D deficiency, these are now brought up to the lower end of the ref.range by supplementing.
We have done a Methylation Profile generated by GeneticGenie.org and it came out saying
"You have 1 homozygosus (red) mutation. These are the worst kind of mutations. They include MTHFR C677T"
There are other mutations that appears to be connected to B12 malabsorption and others that shows she is depleting B12 to fast.
What is your take on this? I very much appreciate your thoughts on where to go from here because this illness is taking its toll on us after many many years of coping with too many doctors that are blinded by the obvious and deaf to common sense.
Looking forward to your comments and we will be thankful for any forward leads.
None of those GeneticGenie reports should say nothing about B12 absorption or rapid depletion. The only thing of any relevance is the homozygous C677T mutation. That means that your wife may benefit from supplementing with methyl folate rather than folic acid.
I'm so sorry that you and your wife are going through this traumatic experience - I know how heart rending it can be to see someone close, previously gentle and reasonable, deteriorate mentally and physically, for the sake of adequate treatment with a simple and cheap B12 injection. Sally Pacholok's book gives excellent advice and your wife appears to have classic symptoms of B12 deficiency, which is much more common than most people believe, especially over the age of 60.
Autoimmune disease runs through our family and I found myself having to self inject with l ml. Hydroxocobalamin every other day over a year ago. The terrible fatigue, memory loss, anxiety, tinnitus, as well as pins and needles, improved but I noticed setbacks each time I became stressed or overdid things. I've been able to keep on top of this by injecting every day and will continue to do this, at least for the time being.
I also ensure other vitamins and nutrients are optimal, by taking Gentle iron and a B complex every three days, as well as regular doses of vitamin C, D, etc. It is recommended that methylfolate is preferred over folic acid For those with the MTHFR gene or migraine.
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How do I decide frequency of injections?
NHS is infuriating.
b12 spray
Proof 3 monthly injections don't work??
