NHS Guidelines not quite clear to me

NHS Guidelines not quite clear to me

I am not quite clear about the Guidelines for B12 deficiency with neuro. symptoms.

Is it saying - loading injections every second day for 2 weeks (6 inj.)

Then another week of the same making 3 weeks.

OR

6 Loading injs. as above plus 3 more weeks of the same - not that I got even that. (5 loading and bye bye.)

My sinus has blocked again and the mucocele has regrown so another op. this time I have to go to Birmingham, am waiting to hear from them. Thank goodness the ENT in Glos. is excellent. I have had super treatment from the Consultant here.

Have added a picture - print it and use it as a dartboard?

26 Replies

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  • In my case I had to inject daily for over 2 years and even them sometimes twice a day for the neuro issues to go away. I was injecting 10,000mcg of hydroxocobalamin on some days and 5,000 daily.

  • I'm really interested to hear that ! That shows amazing perseverance on your part. You have given me hope ! My feet were absolutely numb. I have been injecting once a week , and seem to have reached a standstill regarding the feet . They are no longer numb , but burn like hell now . I'm inclined now to try daily having heard your result . Thanks for telling us Best wishes to you !

  • I am now having one inj. a week too and my legs were numb almost up to the knee and could not feel hot water, now I can feel hot water and legs no longer numb but get 'tight socks' and 'burning' but they are cold to the touch. I think that that means they are healing.

    I think one a week is too little, and want to try every second day. I read somewhere that that was the best regime for neuro. symptoms. (Can't remember where.)

  • I'm so pleased beginner 1, that you are having such improvements . I'm glad that the numbness in my feet has gone, but like you have awful burning , and the feeling that I'm wearing shoes at least a size too small ( same as tight socks really ) I think I will try every other day , after reading that a forum member has been injecting every day .,

    I believe that antibiotics kill off good and bad bacteria in the tummy, which leads the flora being disrupted . If you have PA , you have low or no stomach acid according to a gastroenterologist I consulted . There is no NHS treatment for this . Low acid leads to very poor absorbtion of B12 which is one of the most difficult vitamins to absorb anyway . The absorbtion of other vitamins and nutrients can be affected as well . That's why we as PA patients must pay great attention to our diets , and take some supplements. Also Sauerkraut ( organic home made ) is a help in keeping the tummy flora in good order ( probiotic)

    Always pleased to hear of your progress . Best wishes .

  • I have been watching the video that Dr Tom O ' Bryan has been putting out . ( Thanks to Polaris who gave us the link ) He advocates a gluten - free, sugar -free diet for all autoimmune patients, who we PA people are -He explains the reasons in a scientific way. Am reading his book called "Autoimmune Fix" at the moment . He tells us , as we already know, that an autoimmune disease seldom comes alone . The American Autoimmune Related Diseases Association has published a list of these diseases and there are 159 !

    Sorry I haven't answered your question ! I never got the proper loading treatment. I was dismissed as being a hypochondriac , as my totally numb feet were "ideopathic " Someone will give you the correct guidelines I'm sure. But I thought that I would pass on this latest idea concerning PA and other Autoimmune conditions .

    Very best wishes to you . I hope that you find a solution to your health problem .

  • Yes get back to basics fruit and vegetables and some meat but not too much and heal your gut with good bacteria. Saurkraut :)

  • Beginner1 , forgot to say how I love your illustration !

  • Wot actually answer your question-

    Injections every other day until no further improvement in the symptoms.

    Some recommend a review of the situation after three weeks.

    There are two very good reasons why one should not continue until the symptoms have gone. Firstly, some neurological damage may be permanent. Secondly, some neurological symptoms may be due to a problem other than a B12 deficiency. If either of those apply then one could inject every other day for the rest of your life without any possibility of a conclusion.

    As for the so-called 'leaky gut'. Be aware that no serious organisation thinks there is anything at all behind the idea that all autoimmune diseases are caused by eating gluten and/or sugars. The person behind this series of videos isn't even a medical doctor.

  • Hi Fbirder,

    Am interested to know how you are aware the person behind the series of videos RE: gluten and sugar as possible causes of autoimmune diseases is not even a medical doctor. It's not I don't believe you but would like to know since I don't believe one should automatically follow a specific recommended diet while clutching at straws. There are too many diets about, some may be fads. Thanks for letting me know. Incidentally have you read the book written by Dr O'Brian "Autoimmune Fix", and if so is it worth reading?

    Thank you.

  • On his personal profile he lists his qualifications as:

    DC (Doctor of chiropractic), CNN (Certified National Nutritionist) and DACBN (Diploma of the American Clinical Board of Nutrition). That last one is a part-time weekend course. None of them are a proper medical degree (MD).

    No, I haven't wasted my money on his book. Just like I haven't wasted my money on anything claiming to cure me by astrology, crystal gazing, squirting coffee grounds up my bottom or other fruitloopery.

  • Thanks for that. To be honest this was my suspicion... Too many people jump on the bandwagon of making money on the back of people with health problems.... So like you, I won't waste my money on such a book... crystal gazing, enema.... etc.

  • fbirder - hi having a 'grumpy day'? - tho. I do agree with you. You forgot to mention the snake oil.

  • Love the cartoon ! I am gaining so much knowledge from reading these posts. I now know what a Mucocele is , thanks to good old Google, but so sorry to hear you have one... again. I have mouth issues, too, and it`s miserable. Guidelines don`t seem to mean much to the Medical Fraternity. They seem to be written down simply to give them something to ignore. I feel like getting some relevant ones printed on a plywood sheet and clouting someone over the head with it. Wouldn`t that make a good cartoon?

  • I haven't been able to find a forum for 'sinus mucoceles' although there is a good amount on the internet including videos, but it would have been nice to get some support and other's experiences.

    The antibiotics and steroids, even short courses, have 'clobbered' my B12. just as I had seen quite an improvement in neuro. symptoms. Still it is two steps forward and only one back.

    Use 'MDF' it is heavier - would pack more of a clout.

  • I don't think that the 'leaky gut ' idea can be totally dismissed just because Tom O'Bryan isn't a medical doctor . It may not be correct, I agree. But think how we here on this forum have been served by medical doctors . If one follows Tom O'Bryan's advice , and it doesn't help, it will have DONE NO HARM, and one will have been eating a healthy diet.

  • Even the celiacs society think he's a quack - celiac.com/gluten-free/topi...

    And I'd much rather take my medical advice from an ill-informed doctor rather than somebody with no relevant qualifications who is only interested in selling me his book.

    badgut.org/information-cent...

    Another issue in this field is that many people in the popular media who support this unverified condition try to sell special products as a treatment for leaky gut syndrome. They offer unproven treatments for a condition that has no medical basis. Additionally, since many of these supplements haven’t been well researched, taking them could cost you a lot of money, do little to reduce your symptoms, and could even be dangerous.

  • 'Leaky' gut and chronic health problems (not only gut problems) caused by disturbances to the gut biome (often caused by food sensitivities) are topics of active research within the NHS. My gastro-entero Prof is involved in some of this. On the other hand, the gastro-entero surgeon who referred me to the Prof had no clue about this area, taking the traditional view that it's all twaddle. He did at least admit that the Prof might know more than the average medic, hence the referral.

  • The effects of changes to the gut biome are fairly commonly accepted medicine. I'll bet your prof doesn't use the words 'leaky gut syndrome' when describing their research.

  • Actually, he does, as it's the easiest way for a layperson to understand the origin of the digestive or AI problems.

    A lot of medics use laypersons' terms, like 'tummy', 'boob', 'pinkie', etc., though they're usually being patronising at the time.

  • Plenty of mention of 'leaky gut' in the literature. e.g. already from 2005, in Nature Reviews Gastroenterology and Hepatology: nature.com/nrgastro/journal...

    This review is timely given the increased interest in the role of a 'leaky gut' in the pathogenesis of gastrointestinal diseases and the advent of novel treatment strategies, such as the use of probiotics.

    A while back I was looking into small intestinal bacterial overgrowth (SIBO) as I had it (diagnosed by GI doctor at local hospital). There's plenty of literature discussing gut permeability and a few publications explicitly used the term leaky gut. I didn't save the references at the time so can't include them here. Google scholar finds many more mentions of leaky gut, even in reputable journals. Suffice it to say that 'leaky gut' is not a bad word (rather, phrase) and its use doesn't make one stupid or less critical.

  • Is there a link between your sinus issues and b12 deficiency?

    I am in a similar situation

    Many thanks

  • I don't think there is a connection, but don't know. There is a connection if you are given antibiotics or steroids to treat the sinus as they both wipe out the B12 and one has to build it up again.

  • That is handy to know thanks, I've suffered with sinus issues (I believe) for over 18 months now. We've just found out that I'm slightly low on the b12. I will start to have the b12 injections every other day for 2 weeks soon. I have many signs and symptoms and I'm trying to work out what could be related to what. I'm also low on vitamin d and I'm sure this is related aswell

    Do they know that it's the antibiotics and steroids that have affected your b12?

  • How do antibiotics and steroids wipe out B12? How do you know? Do you have to inject much more to keep your symptoms at bay when you take them?

    Since I started SI I have at last got an immune system so haven't needed any but would like to be prepared in case I did.

  • I think it depends on the antibiotic. The patient leaflet that came with my prescription for hydroxocobalamin mentions chloramphenicol as one that will effect B12 levels. Not sure which others may.

    medicines.org.uk/emc/medici...

  • Love the drawing. :-D

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