I am posting this up on the forum to give you my account of what happened when I tried the oral B12 spray. I was sceptical as to whether it would have any effect. As a psychotherapist, I am well aware of the placebo effect and do not claim that my experience will be the same as that of anyone who tries it for themselves. I do not wish to offer false hope to others whose conditions may be different from mine. Neither do I claim this experience as scientific, as I am a scientist myself. I believe I suffer from B12 deficiency brought about largely by my long-term use of Metformin, which is known to block B12 absorption in the gut. I have been taking oral spray B12 for less than a week, but have kept a diary that may interest you.
Before I took the oral B12, my symptoms were as follows:
I had lost my sense of balance and was unable to walk even with a tripod-tipped walking stick. I was at the point of needing a wheelchair as I kept falling over several times per day. Once, I fell badly while out at a garden centre even though I was using my walking stick. My left leg would either drag or shoot out unexpectedly and involuntarily.
My sense of positioning was badly affected. I would lose balance if I tried to turn my head, or if someone unexpectedly entered my field of vision, or a sudden sound broke my concentration. I have always been able to multitask, but walking demanded all my concentration as I had no reflexes that would run my legs for me. I felt as if my legs would get tangled up because I could not coordinate them as I had done before.
Additionally, I had sudden, bouts of diarrhoea and became concerned about leaving the house and not being able to get to the loo in time.
DIARY
Wed 21st April
6pm I took 4 spray doses of ‘Better You Boost oral B12 spray’ bought from Amazon UK. The instructions state that you can either spray the insides of your cheeks or the area under the tongue. I sprayed the inside of my cheeks 4 times as described in the instructions.
After 2 hours I got a slight headache (I never get headaches) and a slight muscle cramp in my left leg. I felt exhausted all of a sudden and had to go to bed at 8pm as I could not stay up.
When I woke up the next day, the headache had disappeared as had the slight leg cramp. I noticed that my legs felt different and that I could stand up without the walking stick
Thu 22nd April
12 midday I took another 4 spray dose
After two hours I felt suddenly exhausted and went to bed for 2 hours. When I woke up my legs felt much stronger. I was able to walk without a stick – something I had not been able to do for 7 weeks. I was able to stand for 5-10 minutes unaided.
Fri 23rd April
12 midday I took a third dose
This time I did not feel tired nor did I have any side effects. I was able to get up from a sitting position without any help, walk about and my head felt different as if some fog had started to lift. I was able to multitask and could handle unexpected stimuli without falling or losing my balance.
Saturday 24th April
12 midday I took a fourth dose.
My son asked me to drive him to the station. I noticed how clear my mind was and how many of my previous faculties were returning. I could multi-task and had a strong sense of geo-positioning. I could take in a lot more of the world around me without becoming overwhelmed. My reflex actions were returning and I noticed that I could allow my legs to operate without my conscious mind having to make every move for me.
Sunday 25th April
10am I took a fifth dose
I was able to dance a little as I trusted that my legs would do what I asked of them and they were not dragging or shooting out. I can run a little and feel more normal. I have not fallen since taking the oral B12, my legs are starting to feel stronger, my coordination is returning and I soon will be walking outdoors without a stick.
Monday 26th April
8am I took a sixth dose
I have been able to walk to the garage (about 50 feet away) and back with no fear of falling. I’m due to speak to my nurse on Thursday and will ask for more regular B12 injections. The new doctor has already agreed to every 2 months, but I’d like to get an injection every month. I’m expecting a delivery of B12 ampules from Germany, and would like to thank fbirder for his very kind and helpful information on how to procure them.
Please remember that these are my personal observations and the relief in my symptoms has been miraculous as far as I’m concerned. Maybe it’s a placebo effect or maybe it only works for me. I just wanted to share my experience in case it helps others out there who have not tried the oral spray.
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Pleaforsanity
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May I ask why you are buying B12 ampules from Germany if the spray is working so well. The spray is much easier to source, it can be bought from Amazon.
I had already bought the ampules before one of my sons suggested I give the oral B12 a go. I may not need the ampules if my symptoms continue to improve.
I don’t know if you read my recent post about my collapse last year. I was in trouble. My symptoms were very similar to yours. Yet within 3 days of taking oral B12 I was 90% recovered. My neurologist says that how he knows a patient hasn’t got ms or parkinsons etc. Only a patient with a B12 deficiency would have that kind of response to B12. B12 truly is an essential vitamin. I have PA.
Thanks for sharing your story. I hadn't seen your post but it seems that you improved with the oral B12. I'm resistant to the oral tablet form because of the metformin issue. I have checked with several experts in the field and they confirm that it may take over a year to get the necessary amount of B12 into my blood in sufficient quantities using that method. I improved while on the 6 injections over 2 weeks regime. It has been the 3 monthly maintenance dose that made my symptoms reappear. It's interesting that your neurologist recognised you have PA because of your positive response to B12. All my neurologist wanted to do was eliminate brain tumour and inner ear defects to explain my loss of balance. He did not mention B12 or peripheral neuropathy. It has been others on this forum whose experience has helped me see what the doctors have failed to address.
I estimate I was about 50% recovered on tablets. That was mainly my neurological symptoms. The neuropsychiatric symptoms didn't start to recover until I switched from tablets to sublingual. It was then I recovered to where I am today. About 95% recovered. I still have mild Orthostatic hypotension and some problem with fine motor control. And when I'm tired I suffer some loss of intelligence i.e suddenly find I can't spell even simple words. But I'm so happy to have recovered from all my other symptoms. I can live a normal life now. I can always use spell checkers when necessary. .
Thanks for your very informative reply. I'm glad that someone else has benefitted from the sublingual method and that your symptoms have greatly improved.
I understand that the spray gets absorbed directly into the bloodstream since it acts through the cheek cells or those under the tongue. The methylcobalamin in the spray bypasses the alimentary canal and the complexities of the digestive system. In contrast, the oral tablets still have to go through the complicated biochemical transformations involving intrinsic factors and the methylation processes, so they wouldn't work for me as I have to rely on blood cobalamin.I am astonished by my reaction to the oral spray, since I was doubtful that the spray would find its way into the bloodstream,. I thought most of it if not all would end up being swallowed. I'll write an update after 2 weeks and see whether the improvements to my symptoms continue.
No. The B12 molecule is too large and too hydrophilic to cross biological membranes unaided. Otherwise we wouldn't need injections.
It's even worse than that though - salva contains haptocorrins. Their job is to bind to any free B12 they find in the mouth. That protects the B12 from damage caused by stomach acids. The haptocorrin is removed by pancreatic proteases once it's in the small intestine.
You can tell that nothing gets absorbed from a sublingual dose by looking at the studies of absorption. They will tell you that 1% of a sublingual dose is absorbed - 10 mcg of a 1000 mcg dose.
But the people who claim that B12 can be absorbed through the gut via passive absorption also say that 1% of an oral dose is absorbed via that route.
So, it 1% os a sublingual dose of 1000 mcg is absorbed sublingually, then 990 mcg is swallowed. And you'd expect 9.9 mcg of that to be absorbed by passive diffusion. So a sublingual dose should result in 19.9 mcg being absorbed.
But studies show that the IF-mediated absorption process has a limited capacity of about 10 mcg at a time.
So - if you give a 1000 mcg dose sublingually to a normal person, you should get 10 mcg absorbed from the mouth, 10 mcg absorbed by passive diffusion and 10 mcg absorbed via the IF route.
But you do not. You get 10 mcg absorbed. The same amount absorbed via the IF route.
Simplest conclusion. There is zero absorbed sublingually or by passive diffusion.
Thanks for such detailed information. My understanding is that methylcobalamin is the form present in the German ampules which is injected into the blood. That is the form of cobalamin that you and others inject, whereas the UK B12 injections are of hydroxocobalamin. According to Martyn Hooper and others, Hydroxocobalamin has to be converted to methylcobalamin before it can be considered 'free'. Because of my metformin use, I understand that it prevents B12 absorption in the Ileum, although no one appears to have published a mechanism to explain such blocking. Thanks to your help, I have ordered the German ampules to get B12 directly into my blood to address the metformin-induced deficiency,
I do not know the mechanism for absorption of B12 in my mouth but something is definitely happening as my symptoms of peripheral neuropathy have improved significantly.
I am open to the notion that it is simply a placebo effect. If it is, long may it continue since I was at the point of needing a wheelchair less than a week ago. Today I have been able to resume my daily exercise regime of indoor, brisk walking 5 minutes at a time, six times a day.
"Thanks for such detailed information. My understanding is that methylcobalamin is the form present in the German ampules which is injected into the blood. That is the form of cobalamin that you and others inject, whereas the UK B12 injections are of hydroxocobalamin. According to Martyn Hooper and others, Hydroxocobalamin has to be converted to methylcobalamin before it can be considered 'free'. "
The stuff we buy from Germany is hydroxocobalamin. They do not use methylcobalamin in Europe because it is more expensive and less stable than hydroxocobalamin.
Martyn's book was written before the details of conversion of different forms of B12 was fully known. All forms of B12 are converted to cob(II)alamin when they enter the cell. From that point on, hydroxocobalamin and methylcobalamin are identical. b12science.com/B12Science/D...
It used to be thought that methylcobalamin was needed for the conversion of homocysteine to methionine. That was because it was known that B12 was needed for that reaction and that a methyl group was added to hCys to produce met. Now we know that it's more complicated than that.
The methyl group that is added to the hCys comes from methylfolate. When cob(I)alamin, hCys and methylfolate are bound to the methionine synthase enzyme the methyl group is passed from methylfolate to hCys via the cob(I)alamin. For a fleeting instant it does become methylcobalamin.
But methylcobalamin cannot bind to the enzyme without being converted to cob(I)alamin (via cob(II)alamin).
For the sake of accuracy fbirder you can buy methylcolabamin from Germany in ampoules. I know this for a fact as I emailed the company about the cost. However its far more expensive than the hydrox.... form. In Japan they only prescribe the methylcolabamin form of ampoules.
There is still much to learn about b12 in all its forms where deficiancy is concerned. PA is only one form of deficiancy and it maybe possible that the process gets interrupted or breaks down at different point of processing hence people vary with the amount and frequency they need when this happens. For example I need to inject twice daily or my numbness, brain fog and tremors returns/increases. For me sublingual does not work well though it did in the intial stages. My intrinsic factor blood test was negative twice but we all know that is an unreliable test. My neurologist as has my GP has been very impressed by the effects of my b12 injections. No medic understands why I need them s frequently but dont disupte the need. My neurologist has commented that other patients have reported that B12 injections helps with their tremors too and would like to do further research.......unfortunately the pandemic has stopped any possibility of research.
"I do not know the mechanism for absorption of B12 in my mouth but something is definitely happening as my symptoms of peripheral neuropathy have improved significantly."
And how can you be sure that is due to sublingual absorption and not oral absorption? Or that it's not due to your injections finally doing something? We know it takes a long time to repair nerve damage.
All I have done is honestly report my findings. I am not claiming that they are scientific and am even open to the notion that they may be a placebo effect. As a psychotherapist, I know that science does not explain all things and that many processes are in the realm of the mystical. I see this every day when I work with people. As a scientist myself, I have studied the oral route and spoken to many who agree that oral B12 is unlikely to work because of the effects of metformin blockage. Nevertheless, I am open to the notion that it is the swallowed B12 that has produced these significant results. What I do believe is that we need to pool together all our different experiences because we are all so different and what works for one may not work for another.
They're not making those claims off the top of their head they have measured it. Since you can have difficulty all along the route of b12 absorption it makes sense to give each opportunity along the way the chance to absorb it. Be that mouth diffusion or by the aid of if. If you absorb 1% of it and you've a limit of 10mcg being absorbed? Is that what you're saying? If 10mcg may be absorbed by the three routes you mention Then that means a 3% chance of absorbing it instead of only a 1% chance with if. So I can't see why one wouldn't up the chances even if absorption is limited. It seems logical that the more areas for absorption its exposed to the more likely it will get in somewhere along the route than just via one route. And if you don't have if then at least you have two other possible routes if only a small percent.... I don't understand the logic of reducing absorption to zero if it is established at 1% for two routes but not the third. Which if the person has no intrinsic factor they won't be getting it that way at all anyway. Like if you have 1000 balls and 1% can go down a hole at the first stage 1% at the second and another at the third but the third is limited to taking only 10 balls then you've still got more of a chance of throwing those balls past the first two holes especially if the third hole is blocked entirely. Sorry for my childish example but I can't reconcile what you're saying with the conclusion you've made.
I don't understand the logic of reducing absorption to zero if it is established at 1% for two routes but not the third.
There are three possible routes people have proposed - Buccal absorption from the mouth (B); Passive diffusion (P) and the normal IF mediated route (I).
People have measured the absorption due to I and found it to be about 1% of a 1000 mcg dose.
People have measured P+I and found it to be about 1% of a 1000 mcg dose.
People have measured B+P+I and found it to be about 1% of a 1000 mcg dose.
Ah I see they didn't do the tests and block if in people or mice ...or they didn't use a mouthwash situation where you're not swallowing anything? That seems kinda a waste of lab time. But if they have products to sell and all the need is a test to show it works but not show that it worked in the way advertised... Man they really can do some bad science. So if its not absorbing sublingually this person must be absorbing it via if ... She doesn't say she's been diagnosed with that. Just symptoms. So mostly the effect is just because its a liquid and maybe drinking it in a liquid is slightly better than tablets because its definitely breaking down. I know I can feel my magnesium tablets go all the wya down past my the first parts of my small intestines so maybe the tablets stay intact before the part where theyre absorbed or don't get the r factor thingy. Seems like it would be easy to get a mouse and remove its stomach even and see how much it absorbed in its mouth. Mean to the mouse but then you'd have something of use to go by. Or just people and hold it jn their mouth and then wash their mouth out with water. It seems like s huge oversight to advertise it as sublingual but not have done a test that would evaluate it as sublingual and not some other way. Sigh. Just ...sigh...
"In contrast, the oral tablets still have to go through the complicated biochemical transformations involving intrinsic factors and the methylation processes"
The methylcobalamin would still have to undergo the methylation process. All form of B12, as soon as they enter the cell are converted to cob(II)alamin.
Thanks once again for this article which I shall read with interest. There's so much to take in, even for someone with a background in biology and chemistry. I hadn't come across this article before but I did read your very informative link to the biochemical mechanisms involved in methylation and DNA synthesis. I think sharing what each of us knows and experiences is what I like about this forum. There's so much to learn and each of us may be classified as having PA but there are so many reasons as to why.
I did consider not posting my experience with the oral spray because I did not have a mechanism to explain it. However, as long as I'm able to stand, walk and not have to get into a wheelchair, I'm happy. I shall wait until I speak to Dr Robert Hadden as I've been referred to KCH and maybe he can explain what's going on.
Am sooo pleased it is working for you and thank you for repprting your experience. As we age we are less able to absorb b12 from our stomach due to lowering acid levels. So sublingual may help get round this or if that starts to not work for you injections.
Many thanks for being open to different ways of addressing the B12 deficiency. The more I explore the different complex mechanisms, the more I'm reminded that all science is based on theories not dogma.
Love that. as someone else mentioned the way science is done is to look at one part on its own. Which is helpful in ways but its also like looking at a shattered puzzle...when someone shares an edge theve managed to put together and someone else shares a few bits they've managed to put together it gives you a sense you can see some of the wholeness which is what we all want. To be whole. And as we are all whole with different bits missing seeing that I feel has helped more than looking at the individual pieces and wondering where it fits in. Its good to have both.
Thats assuming the methylation process for all forms of b12 remains intact.This has not been explored as to whether for some people this varies........ Its the idea that one route applies to all that has led to simplistic medical management. Those of us on the Thyoid forum know this approach to management and diagnosi of our conditions oh so well.....& frankly it does not work for all. So how do we know that different parts of the complex processing of b12 dont break down.........there is no evidence to say it doesnt happen. There is no mechanism certainly in mainstream medicine to assess this either. Infact my limited understanding is that its a big fat unknown.
You know fbirder it would be great to have a discussion with you if you could just stop putting people down. Am not sure why you feel the need to do it but its very off putting and unnecessary. There is more than one way to view things and so next time you dont agree with something I write Id appreciate it if you would resist resorting to disparaging comments. Thanks.
If you actually value science as you say you do, you should learn to distinguish between overwhelming evidence for an absence of something and an absence of evidence for the existence of something. If there was only an absence of positive evidence for pixies that would leave it open to investigation. There is an overwhelming amount of evidence which shows an absence of pixies. This is not the same thing as an absence of evidence for pixies. You seem not to be aware of some of the most basic foundations of the philosophy of knowing. The first foundation is to start from the assumption that you do not know. The second is to assume a thing is knowable. And the third is not to try to make fools out of others lest you make a foolish mistake in the process. (And I've seen you do that twice today.) The only objectivity we have in this universe as humans is not absolute but is by collecting subjective observations and seeing if they accord with one another. The observation of one is triangulated by the observations of others. Just as one eye cannot perceive depth but needs another ..and the more eyes the more accurately you apprehend what is before you. At what point adding more eyes becomes redundant depends on the depth of field you wish to have. I wouldn't mind you pointing out a mistake if she or Sagan had made one but I'm afraid it is you who was misunderstood the meaning and implications of the quote. I hope I have helped you understand it better. And I assume that's why we are all here. To understand things better and find out where we are wrong together and where we are right together. Otherwise we would just go off on our own tangents alone. we are here to gain understanding from each other right? To learn more from others than we know on our own. To gain a wider perspective so we can better understand ourselves and how to be well. I can't imagine piddling on a Carl Sagan quote from below will do anything for you but give you a wet face.
Thank you for sharing. I also had the same spray and was taking more than they Said...the pack said fine soray and i did four I also felt exhausted and sort or a weird feeling in my legs like a heavy buzzing feeling but it was uncomfortable bordering on painful.so I stopped taking it. Someone mentioned that it could have been it working ...and you're experience seems also to be discomfort but improvement so I may have given up too soon. I've started taking only one spray this is only my third day but the tinnisus is lessening and I haven't had any discomfort in my legs. So I'm just going to go slow. I don't think I have absorption problem just a bad diet since lockdown. Your story is a good one as I should really make a note of these things as I so easily forget and then after the fact its very hard to piece evidence together. I think I will start to write a note before bed so I can look back and see. Maybe my memory will improve too. I knew tinnitus could be an issue but didn't know my memory and going blank and other things like heart arythmias and legs being weird could also be down to an deficiency. I hope your improvements continue! Even though its not completely scientific its really useful to know these things which statistics don't tell you. And the more subjective stories we collect the more perspective we cab get. Nothing is truly objective but collective subjective seems closer to objective . and its qualatative, which is harder to be measured and yet still very important. Thanks again.
Absolutely glad you did its a really good idea to keep track so that we can assess things better. Its an observational study of one but it its the one person who matters the most. You. Or me. I'm definitely going to track my symptoms. I have been tracking my diet on and off and that has lead me to realise I'm chronicly undernourished.
So glad you did Pleaforsanity! Sharing our experiences is a fantastic way of being validated for yourself and others. We are all individuals with our own responses........medicine pidgeon holes and that helps many but for those who dont fit the neat round holes we tend to get dismissed or written off. Massive shame as medicine miss a golden opportunity to learn more.....lol. So keep sharing..... 👍😊 and thank you!
Hi Pleaforinsanity, thank you for taking the time to diairise your use of the spray so fully. I tried the same spray a few years back but sadly, it didn't seem to do anything for me. I was also given methylcobalamin injections in India and honestly didn't notice any difference between them and the hydroxocobalamin I use now. I hope that if the spray does work for you, so that you can bypass the unpleasant use of injections. Wish you well 🙂
Hi, thanks for your reply. I'm coming to the belief that PA as a category is so diverse that what works for one person doesn't necessarily work for another. My B12 deficiency is based on the fact that I've been on long-term metformin and which blocks the absorption in the gut. Yours might be a different cause. I am ok with injections but wish my GP would allow me to have them more regularly. In the meantime, I'm continuing to monitor my symptoms and keep notes in a diary. I too wish you well.😊
Thank you for sharing. I had similar experience but with nasal spray - though my recovery did take a bit longer. At the moment I use very high oral as main supplementation.There is quite a body of evidence and trials on use of high dose oral as a treatment method can be effective as a maintenance treatment - and the first treatments for PA were actually a version of high dose oral.
This forum is not intended to be a place for scientific debate but one in which people can share their experiences as you have done - so thanks for that.
I am not so sure as others that the mechanism for passive absorption is simple classic osmosis. Microbiologists are finding increasingly that quantum effects play an important part in biological processes.
What is certainly true is that things don't work the same way for all people and we still have a lot to learn about why that is the case.
PS - one part of the definition of the placebo effect is that the ingredient involved is inert and couldn't produce the effects reported. Reality is that B12 isn't inert and could produce the effects involved, though we may not understand the full story behind how it is working.
Thanks. I agree that we need the personal, human touch and experiences to complement scientific knowledge. The placebo effect is often misunderstood as sometimes it is simply manifesting some hidden processes that science has not yet caught up with.
That's very interesting someone told me spraying was pointless because they measured it on normal people who absorbed the same as if they'd just swallowed it. So its interesting that there's a nose spray as this couldn't be going into your stomach! Have you heard of a guy called...wait now if my b12 is working I'll remember... Lol eirherid rimfried? ..hang on I'll google it...Pfeiffer, Ehrenfried Pfeiffer. Anyhoo he did these tests with crytalizing different vitamins ...some synthetic and some natural and the patterns they made on his test were beautiful and geometric when natural ..also he did healthy seeds and stunted seeds and damaged plants and could tell the pattern difference between a living seed and a damaged or dead one. I don't know if this has something to do with cis and trans molecules in synthetic vitamins perhaps... But I just had a feeling you would like this. Its all questions and curiosity but I find it so fascinating. I don't know if it relates to what you were saying about it being inert but his theory was that the loving pattern of alive foods was a property in and of itself. That eating a fresh banana say had something other than just the chemicals you might put into a synthetic banana ... Anyway it just popped into my head so I thought I'd pass his name on. Unfortunately I didn't find anything very interesting about him on google apart from what I've told you here which was from a book called "raw energy" google results were about soil sampling and purity control testing of chemicals for which his technique is used tot his day. But his theories or ponderances about what the tests might mean I found very fascinating. Anyway hope you do too.
I agree. The more articles I've read the more I'm coming to the same conclusion. I've yet to come across a mechanism that might explain why I can't absorb B12 due t long-term metformin use. And even if I do, it will still be a theory. I prefer to deal with practical solutions such as the fact that my symptoms have greatly improved since taking the oral spray.
Thanks. I have ordered the B12 ampules from Germany. However, I may put the self-injection on hold until I get an assessment at King's College Hospital, Peripheral Nerve Department.
My other half credits the BetterYou spray with saving his life. He had become so depressed at being dismissed by the professionals and not knowing what was wrong with him. He had similar results to you where he improved amazingly within a week & now uses a combination of the spray & self injection. Unfortunately his neuro won't listen to anything he says and they've diagnosed him with MS, despite no flare ups or mri changes since starting B12 treatment. Anyway, thank you for sharing your experience & I'm really glad something is working for you. I'm just an observer but I've witnessed how awful symptoms can be & how they can make you feel. Take care & good luck with the injections!
That's really useful. I was sure I was not the only one who is making such a significant recovery. I'm also of the belief that the neurologists and the GPs don't know much about B12 and peripheral neuropathy. I'm sorry your partner has been diagnosed with MS. Sounds as if they might benefit from a referral to the Peripheral Nerve Dept at King's College Hospital or such a specialist place.
How frustrating. I am very sorry for all he has gone through, and for you watching it happen and probably feeling helpless.
My neurologist had someone shadowing him on a zoom appointment and it was my first time meeting him. He told her I need to eat more meat and told me that he never sees b12 deficiency in his practice, said with confidence and ease. Usually I am mouthy when needed, but since he had people shadowing him I refrained from saying, "of course you don't have b12 patients, they are far too busy masquerading as your MS and dementia patients".
Haha so true re. the masquerading! I might steal that line for our next consultation. I just keep wondering when they will wake up. Probably around the time when big pharma realise they're missing out on a gold mine. Gosh I've become such a cynic but this process really grinds you down! I hope you're managing to keep well.
Your restraint is better than mine! I have no filter, and would have said that straight away. I had been wheelchair bound, unable to sit up unassisted by the time I was diagnosed. Three clinics in a very well known university hospital failed to find I had PA. I happened to get a new neurologist that came to the base hospital because mine had deployed to Iraq. This man was originally from the UK, but decided to come to the states and practice so he could be near his daughter, who was married to a soldier. He noticed my symptoms, all of the testing that was done, and how much worse I was getting and asked if he could run a couple more tests. I told him I had nothing to lose at that point, and within a week I was diagnosed. I’ve had plenty of doctors since then tell me there’s no proof lack of a “simple vitamin” could cause so many problems. I have been blessed to run into some that already know about it, meaning I don’t have to explain it.
Wonderful to hear. Lucky that you crossed paths. Makes one livid and sad for those who don't.
I had already been diagnosed by the time I got in to see him. So it was more apathy than restraint. Usually I push through to educate for future patients, and tell them as much. But that day I just chose my own wellbeing. I mean when a neurologist mentions animal products and that he doesn't have any patients with a b12 deficiency - because the GPs look after all of them - well that is pretty much a lost cause.
No idea. I'm too new to the product to have researched it that thoroughly. Perhaps the manufacturers will answer that if you post a question on Amazon under the product?
I guess they can pretend that it does something good especially as it's 'natural'. Even though in 2014, the European Food Safety Authority Panel on Dietetic Products, Nutrition and Allergies concluded that no convincing evidence shows that chromium is an essential nutrient.
It's probably for the same reason that it has green tea extract in it.
That’s wonderful, you have obviously needed more B12 and glad the spray did it’s job. I get a B12 injection every 8 weeks through my GP but supplement in between with vials I order from Germany too. 4 weekly works for me, and in general feel well, Balance was a biggy for me in the beginning too. Wishing you well x
Thank you. I've ordered the vials from Germany but shall wait until I speak to my nurse and the specialist at King's College Hospital before injecting myself. My new GP has agreed to 2 monthly injections but I'm hoping the nurse will agree to monthly. Once I get seen, the consultant may direct the GP in a way that I cannot.
That all sounds positive. I just told my GP that I supplement in between ...she didn’t know or didn’t ask what I used, so I didn’t expand. Not sure if I handled it correctly or not...my hubby does the injection x
I really don’t understand why different countries have different guidelines for the frequency of injections they are as beneficial. In the US you’ll get 1 per month, other countries it’s every 2 or every 3 months. All of them are far too infrequent! I do mine twice a week at a minimum, because without it I’d be in a bad way.
Thank you for this comment! I knew there were different types, often seeming to be preferred by different countries, but I never knew one worked better than the other. I love this group of people, all having something special to add!
Don't take it as "work better"! I tried to avoid saying that because it is an area of controversy. But hydroxocobalamin does seem to remain in the system longer.
Thanks for posting your experience. It’s interesting how people react differently to delivery, I have PA and have tried everything over the years and only injections relieve my symptoms. Better You didn’t do anything for me other than give me a temporary sugar high! I’d like to mention that it contains artificial sweeteners and these play havoc with my stomach. I thought I’d mention just for others to be aware if you have gut issues or IBS as part of PA, this may counter any benefit!
Interesting side effect. I wear a freestyle libre and if anything my sugar regulation has been better in the last week than I can recall in the past 5 years.
Delighted for you!
I'm blinded by the science on here....amazing....but I'm not scientific and my head is easily tied in knots so I'll keep it in simple terms.
I have kept a health diary since I went downhill after a horrific bout of norovirus in April 2016, I became totally exhausted and more or less housebound by the Oct, pretty much a physical & mental wreck, and was given a diagnosis of PVFS/CFS, and left to get on with it really with 'pacing' and antidepressants recommend.... the antidepressants sent me nuts so wasn't on them for long!!
However, to cut a long story short, what you have written is similar to my experience of oral b12.
I'll copy a bit of my diary here...
Aug 2017....After some research I started 1200mcg methylcobalamin sublingual, 4 sprays daily.
Day 1…. I slept better
Day 2…..Mood is bright, like a lightbulb has been switched on
Day 3….. woke feeling energised & bright..no trembling, no nausea... managed to shower & dry my hair without being breathless!
Day 4….. managed some housework (vacuumed carpets without having to sit for a rest….monumental!!)
Day 5….. Managed a 1 mile walk, balance much improved
Day 6...Managed the weekly shop!
Day 7.. beginning to feel 'almost’ normal!
Appetite is back! No insomnia!
Can't believe the vast improvement in just 1 week on b12 spray. Have I been misdiagnosed? Is it B12 deficiency not PVFS?
After a month on b12 developed a really bad headache & outbreak of spots on face.
Joined Dr.Chandy's B12d Charity support group,
was advised by them to add cofactors so started to add folate, B complex, magnesium glycinate and eat more potassium rich food….headache went, spots went.
I maintained a steady level of improvement, balance has improved, better sleep, bright mood, better energy, renewed interest in 'life'...
The above is just a small snapshot, I then moved onto a daily higher dose sublingual lozenge, Jarrows 5000mcg and this maintained a better quality of life however the more active I became the more lozenges I needed and I would get relapses, particularly my balance... and tremors if over stimulated i.e too much noise, too much chatting etc.
I was spending a lot of money on sublinguals!!
In 2019 I started with pins & needles in my fingers & toes (left side only) and a weak left leg so back to my GP
I gave them a copy of my diary and after reading it and taking into account my new symptoms they started me on b12 injections...these had previously been refused when I requested a trial as my blood results were deemed normal...my b12 was 214 & folate 3.5. They agreed with me that my problem was 'probably' deficiency not CFS.
I did have an I.F. test which was negative but thankfully my GP went by my symptoms.
I now get prescribed monthly injections, recommended after consultation with a neurologist (who I also gave a copy of my diary to), however this is not enough to keep me on an even keel so I s.i whenever I need it, mostly weekly but sometimes every 3 days.
I absolutely dreaded self injecting but I don't have a bottomless pit of money and it's miles cheaper than sublinguals given the amount I needed to take! I do subcut into my tummy which works well for me. The first few times I did it I had to really psych myself up for it but I now find it easy, and painless.
Oh dear, this has turned out a bit longer than anticipated, sorry about that....but, like you, sublinguals literally jump started my recovery too.
"I absolutely dreaded self injecting but I don't have a bottomless pit of money and it's miles cheaper than sublinguals given the amount."
This is my situation as well, with cost I mean. I can get a b12 vial in Canada for as low as $5. I can walk into one pharmacy and get a syringe and needle for 40 cents which is about on level with ordering them in bulk (most pharmacies are a $1 though).
So yes sublinguals, the way we need to take them, are more of an expense for me hands down and back around.
I just found this spray to see if I absorb it, should last me six months, for a very low cost. I have just started to give it a try between injections.
"I could allow my legs to operate without my conscious mind having to make every move for me."
Totally off-topic but this is one of the most difficult parts for me to explain. Both my GP and loved ones struggle with the notion that I have to say right-left-right-left - and straight! straight! - when walking, and how utterly exhausting that need can be.
They only see my walking coming back, certainly not the mental force needed to accomplish it.
Thanks for expressing that part, it helps to read it. So very happy that part has improved for you.
Thank you. I tried to get across what others find difficult to appreciate. The enormous act of concentration required to allow me to walk, something I used to take for granted. I had one of the doctors suggest that I simply needed to exercise more as if I'm lazy. I have been able to resume my daily 30 minutes of brisk walking in 5 minute bursts something that I could not do without thinking about every step. Another thing I've noticed is that I can withstand sudden, unexpected noises or other people coming into view. I used to fall over whenever that happened because all my concentration was taken up by the sheer act of walking. It's a bit like when we first learn to drive and have to concentrate on the pedals, steering wheel and the other dials and controls. Only part of the available energy goes into looking out of the windscreen and anticipating traffic and pedestrians etc. Once we train ourselves to drive, the 'inside the car stuff' becomes automatic.
I felt tears coming to my eyes reading all that. Very happy for you.
Walking was my life and joy. I could walk with a smile on my face for hours.
And before I was diagnosed I would say it is like I can no longer walk properly. Like my legs aren't in tune with my body. They barely could keep me standing. I had foot drops constantly - walking and on bike, my friend would continually say "Stop, what's wrong with you?" when I walked into her, and I had numerous falls. I have since learned that falls, foot drop and proprioception issues are a very common sign of b12 deficiency. But my GP didn't know that.
And then I fell down subway stairs that I used to dance down and I pushed for more testing. I asked for b12 knowing absolutely nothing about it. Voila. I was at 103.
I am still hopeful that the "right left right left straight" will end. But I am a year and half in with treatment, so who knows.
But how wonderful to hear about positive changes! I have had a ton as well, so I need to remember to be thankful.
I remember how tired it would make me, having to tell each leg to walk every step. Gritted teeth. I remember that too. Just trying to make it back home. It doesn't happen now. It took a couple of years of frequent B12 injections to make this disappear.
But the very last time I was suddenly in trouble like that was this time last year - working hard on a garden project in the sun, one requiring a level of both mental and physical effort that I really no longer have to spare. Making raised vegetable beds and surrounding paved pathways -and inexplicably kept tripping over the framework for the beds even though I could guage the height, could see the frame in front of me. Just couldn't get my feet to work properly. Then started tripping over the back doorstep for the same reason.
I'd cut my leg on the frame but couldn't feel it at all. It wasn't particularly bad though didn't heal properly for many months.
So foot drop, lower leg numbness and poor healing :
Why this happened when I thought I was over these particular problems, I'm not entirely sure. There was no change in B12 injection frequency or multivitamin & mineral supplement or prescribed vitamin D -so nothing obvious to explain this.
It didn't happen again after that.
For this reason, I work on the assumption that any of my symptoms could return, even ones that are rare or that I've almost forgotten about. Some symptoms never went.
I still self inject frequently. B12 Boost spray was for me a total waste of money.
Keep going. Progress seems imperceptible - gradual changes going largely unnoticed. It can take some people a long time. I found looking back at my old diaries useful and a morale-boost. What was I doing on this day two years ago ? Sleeping mostly !
Thank you so much Cheryl, such a comforting and beautiful post. I appreciate it greatly . And happy to hear about your recovery. And here's to what is left to improve for you, improving soon.
Hope is everything and you have provided me with an extra bump up! So grateful. I am sure everyone is hearing how things can change. Tons changed in a snap for me but issues that didn't have had little progress - so far. Or so I perceive....
Can I ask you how often you self-inject?
(Pleaforsanity, I am sorry that I have taken your thread off course a bit)
I was injecting every other day for about two years, then reduced to current regime of every three days. I have hopes of further reductions but so far, this hasn't worked out well for me. Sometimes I feel so well that I think I'll have another bash at it, but the longest gap so far- six days - was when I had covid at the beginning of this year and was simply too ill to inject myself. I went back to every other day just while in recovery from covid.
Now back on course.
It does not worry me to inject so frequently, but it seems to worry consultants. I am far more concerned to avoid deterioration at all costs.
I can't recall ever having a period of rapid improvement. I couldn't even feel the injections at all, and started at one point to doubt whether I was actually being treated at all (that'll be the paranoia kicking in)! I certainly got worse after the loading dose. It took about three months of reloading (given 2 injections a week) before I felt anything at all. Not that it hurt me - I just knew that I'd been injected. I was delighted with this first sign of progress ! Well, it's all relative, isn't it ?
My GP, friends, family and work colleagues noticed later improvements before I did.
My last blood tests (Nov last year) were the best so far. Folate, ferritin and vitamin D had all gone a bit erratic for a few years. MMA was also raised for three years.
Very difficult to work out what to do when and for how long - we are all so different. The aim is obviously to pre-empt return of symptoms, but that means getting rid of them all first. Something I've not managed.
Thank you Cheryl! It all helps more than I can properly communicate.
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(For anyone reading I had horrid symptoms during loading, crazy stuff, and then tons of improvement. So at times one has to push through what can seem like ten steps backwards)
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I tried to avoid saying that because it is an area of controversy. But hydroxocobalamin does seem to remain in the system longer.
so I'll keep it in simple terms.
GP stopping my B12 injections. Replacing with oral B12
B12 oral spray - which is the best? How much do you take?
Oral B12 and B12 spray
