Would love a little help with b12 dilemma'

[Hidihi]

firstly, thank u for reading this & thanks in advance for any helpful comments/suggestions. apologies in advance for the length of this post.

i've had ME/CFS for some years. the usual kind of onset, an infection that i couldn't shift. the ME/CFS condition got out of control 3/5 yrs ago when i presented with (non age related) severe chest pain & collapse. following the first collapse my normal b/p of 130/70 dropped to 70/50 ish. following the first collapse, i started having swallowing/breathing difficulties. the b/p eventually stabilized @ circa 90/60, but goes up to 100/65 when i go to my GP as i get in a state. my GP says this is within the normal range. btw, i've had some terrible experiences with my GP since i moved to the area where i presently reside. however, because of the low b/p i have to lie flat for many hrs a day as i collapse when i stand/sit up, this is worst towards the evening, when i'm thoroughly exhausted. cos my ECG/ECHO were normal i was refused a referral to a cardiologist.

i had a blood mitochondrial test done by an Environmental Doc. (ED) - an expert in ME/CFS. the results showed some gross abnormalities in the cell mitochondria. 7 of 14 markers were abnormal. the Environmental Doc advised the 'Sanatra Protocol' (for ME/CFS) which includes b12 injections 0.5 mgs alternate days until ME/CFS symptoms level out. it seemed that once the liver b12 levels were replenished, i started to improve measurably. it was amazing. i could string a few sentences together again. the chest pain decreased & i regained the stone & a half that i had lost in weight. the swallowing/breathing problems improved measurably. and the left side of my body began to get it's feeling back.

the problem: i find that i now have, to have the b12 injection much more frequently than previously to get the same effects. i was having the 0.5 mgs @ 3-4 week intervals. now i have to have them at least weekly. the swallowing/breathing difficulties are becoming troublesome again.

the queries:

1)has anybody on here, have had swallowing difficulties or/and chest pain with b12 def.?

2)any comments ideas on what's happening would be most appreciated. btw, the ED diagnosed Cardiomyopathy secondary to ME/CFS. my GP doesn't consider ED's to be relevant. however, i did eventually get a referral to a Cardio & am awaiting further cardio tests. the cardio thinks, i probably have POTs, so has referred me for test to rule that one in or out, whatever the case maybe. there's a long waiting time for the cardio appointments.

again big thanks for any illuminations on the subject. and apologies for the length. i feel 'context' is important.

[Gambit62 Administrator]

Problems swallowing are a classic symptom of B12D. I've managed to stabilise my B12 levels but know that before swallowing pills was getting increasingly difficult. Also realised - more because it improved than because I'd thought of it as a problem - that the swallow reflex hadn't been kicking in when I was swimming so was taking in water that was just going down the wrong way and leaving me coughing and spluttering - but is much better now. I can't comment on the chest pain but cardio-vascular problems are also a classic outcome from B12 deficiency - this seems to be down to the build up of homocysteine which results in clogged arteries - at least as significant as cholesterol but doesn't get the attention that cholesterol does.

One of the things B12 does is maintain the insulating layer around nerve cells and that's one theory for why it helps with ME and MS sufferers as breakdown in this lining is one of the things that is going on, certainly in MS.

Not so clear what the swallowing relates to with B12D - but almost certainly it's the same effect on the insulating layer around nerve cells but in this case because you are talking about autonomic responses - things that are done without conscious thought - it isn't clear whether it is direct - ie cells controlling relevant muscles - or it's the cells that identify the need for the response so signals aren't getting through to the brain properly ... or even a mixture of the two.

I'm sorry that you are finding that you need treatment more frequently - is it methyl B12 that is being used or hydroxo? methyl might work better if you are using hydroxo as it is closer to the format that is being used at the cell level so requires less processing.

It may well be that as things progress there is more and more damage to be repaired and that takes more and more B12 before you feel the effects.

On the upside high levels of B12 aren't toxic so if you can get the B12 more frequent doses aren't an issue.

[Hidihi]

Hi Gambit62, deepest gratitude for persevering with my long script & for ur illuminating comments. it really does reassure me as both symptoms are frightening. i can readily resonate with the 'reflex' problem u mention. and when the deglutition muscles become 'flaccid' food cannot be wafted down the digestive react. have u got to the point where ur regular injections are now sufficient?

i'm on hydroxyC. i get my supply from the E/Doc, so can self medicate. can hydroxy & methylC be taken concurrently? the don't interfere negatively???? my ED doesn't supply methylC.

re clogged arteries & homocysteine, my GP fobbed me on that one, on the grounds of having a low index for developing cardiac disease according to their test - not over weight, veggie, cholesterol was up a bit but nothing significant. but there is a strong family history of heart disease in the family & also PA.

with gratitude H

[Gambit62 Administrator in reply to Hidihi]

Obvious that your GP doesn't understand statistics and is just doing things mechanically which is really sad - have a friend who had the opposite problem - came back high as risk for heart attack because his dad died of a heart attack in his 40s - heavy smoker - not a factor with my friend.

I take both methyl and hydroxo but mainly as nasal spray - get through a lot of B12 - but think that is because I have an autoimmune response to the transport mechanism so have to keep levels so high that I can't produce enough antibodies to stop everything.

B12 isn't toxic so you have room to experiment - but you do need to make sure that you also have plenty of folate - if possible best if you can get that from diet.

[Hidihi in reply to Gambit62]

gosh, that sounds v. hard going for u gambit62, but i guess it's a case of ''needs must''. the important thing is that u can optimally self-manage the b12 requirement. have u had the usual ANA tests done, that might throw some light on where, or why, the immune system is going awry??

my sense about GP's is that they are generally speaking, rather medically 'rusty', & some are simply not well informed on stuff outside of the regular repetitive stuff they get daily. they've also lost or don't use their 'human sense' based discerning skills, relying on algorithms & box ticking. i guess, we have to bear in mind, that GP's were, until the recent health reforms 'gate keepers', who either wrote a script for patients or referred them on the specialists. now it costs them to do both. they have to have to pay for the meds & referrals, so the are reluctant to do either. the 'balance sheet' decides?

H.

[Gambit62 Administrator in reply to Hidihi]

Never really trusted GPs since I was put on tranquilisers aged 10 (most ended up being spat out of window onto garden) - that was over 40 years ago and generally if I can treat myself then I'd prefer to do that so it isn't a problem.

Thing about B12 is that it is actually quite cheap - most of the costs tend to be medical staff time and they could cut that if they would teach people to inject themselves orput some effort into finding ways of delivering B12 that didn't involve medical staff time so not sure I have much sympathy with them on the budget front ... find it difficult to get enthusiastic about campaigns to allow expensive treatment when people struggle to even get inexpensive treatment.

Would have more sympathy on the breadth of knowledge if the level of knowledge actually matched the frequency of B12D - which is somewhere around 3% if over 51 and gets a lot higher by the time you get to 75 and beyond ... that and the arrogance that means they aren't even prepared to look into things and just dismiss patients out of hand. Having said that there are some good doctors out there but they tend to be few and far between ... and also tend to get persecuted by the bureacracy etc.

[Hidihi in reply to Gambit62]

wisdom aged 10 is the exception rather than the rule. well done u. it's taken me decades & traumatic experiences to come that realization.

absolutely, i agree 100% that b12 is cheap & most cost effective when measured against all the unnecessary sophisticated & costly diagnostic tests completed, when a simple needle prick/b12 test could save all that expense. not to mention the savings by keeping ppl out of care homes & specialist dementia facilities.

better still, as u suggest, why can't they train ppl to self inject. this training could be augmented by y-tube demos. for the digitally literate. injections could be simplified to the sub. cut route. more frequent injections may be required but that quickly becomes routine. think Docs want to employ a minimum no of nurses. their salary have to be factored into these 'small business' GP practices. and of course nurse's salaries compete with Doc's big salary as in the current funding protocols.

couldn't agree more re medical attitudes & often ignorance, not to mention the power/deference dynamics employed to maintain the upkeep of their 'halos'. woe-betide any lay person who dare asks questions. it's interpreted as questioning their knowledge. and 'yes', of course, there r still some good docs who remain loyal to their first principles & who don't sell out to the demands of bureaucracy etc. i mustn't go on - evidence that i've had my b12 injection lol - i get cross for a 'lost' life??

thank u

HH.

[Polaris]

My vegetarian/vegan relative was misdiagnosed with ME for years and eventually dementia, being sent for a raft of tests, including MRI, etc and put on psychiatric drugs. Doctors generally do not know much about B12 deficiency and it can be misdiagnosed for any number of separate diseases.

It was a battle to get the surgery to acknowledge it was B12 deficiency and this failure by doctors causes immeasurable misery and stress. My relative too seems to need more and more injections, even though also supplementing with Jarrows Methylcobalamin 5000mcg sublingually.

You could write to your doctor, using the templates on the following site and enclosing the BCSH guidelines and latest BMJ research document summary****. High homocysteine is involved in cardiac disease and is one of the dangerous effects of low B12.

b12deficiency.info/b12-writ...

(An excellent film on this site)

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

*****Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

Hope this helps Hidihi

[Hidihi in reply to Polaris]

thank u Polaris. yes, that info. is indeed helpful. interesting to hear that severe suppression of the bone-marrow can cause cardiomyopathy. and also, that ur relative needs higher amounts of b12. thank heavens this site exists for the amazing insightful info. it's knowledgeable & generous contributors provide.

i think there are many ppl who have been put through hell like ur relative with misdiagnoses, or worse still, are languishing in care homes with the 'dementia label - sadly given up on. i was convinced i had the early onset dementia. however, i do feel a lot of nerve/brain damage has occurred, cos my cognitive faculties have diminished massively.

i'm going to have a good read of those websites u posted. thank u for summarizing the salient & more relevant points. most helpful. i have given up on trying to get through to my local GP practice. it's exhausting getting the minimum done. i'll try to raise awareness amongst the ME/CFS community via forums etc.

many, many thanks for this info.

[Chancery]

Hi Hidihi (that looks like some kind of stutter!) I agree with everything Gambit says here, but would just like to add that swallowing difficulties is also a thyroid problem (from pressure due to enlarged thyroid or tumours/cysts on the thyroid), so if you have any other indications that thyroid might be a problem, or a family history of thyroid conditions, it might be one to check out if nothing else proves to fit.

[Hidihi]

hi chancery. thank u for commenting. a 'stutter' ............that had me giggling? ?? yes, i'm on thyroxine 100 micros. but my T3 remains low on that dose. however, when upped by 0.25 micros, it causes T4 levels to shoot upwards beyond the normal range. so i remain on the lower dose. i don't have the 'lump in the throat' sensation, nor an external palpable enlarged thyroid, or at least what i can palpate. it's more a sense of my throat closing over due to flaccidity of muscles & accumulation of fluid in the throat/esophageal tissues. this & other symptoms vary according to energy levels. yes, there's a family history of both hypothyroid & PA.

with thanks

HH.