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Wonder if I can ask advice as to whether some of these results from 19yrs ago link to b12 defic. not Iong after ME diagnosis please?

Jo5454 profile image
4 Replies

HiJust delving bk in time & got access to some older records! These results are few yrs aft ME diagnosis.

(still trying to locate some from exact diagnosis time tho did find some- ferritin levels 11, Alanine Aminotransferase 1 below range? Raised protein , globulin & eosinphilia?)

On these results above the b12 level is exactly the same as when I discovered a b12 functional b12 defic,with low Active b12 & very high mma, (privately)many many yrs later!

Can see MCH littke overange & iron stores severely under!

But I'm wondering if the liver results or low potassium have any links to b12 issues please or whether they weren't enough out of range to be a problem anyway. I vaguely remem Dr telling me it was good to have high globulin?

Prior to ME diagnosis I was on lots antibiotics for sinus/tonsilitus/uti infections. Over one spell of 2 yrs counted 20 courses of them! Developed a type 1 latex allergy too at that time & lost weight diwn to 6 1/2 stone.

Know we can't go bkwards, but I'm interested to know your thoughts please?

Thank you...

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Jo5454
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Narwhal10 profile image
Narwhal10

Hi Jo5454,

Your ICB or Health Board decided on a cut-off 130 ng/L. You cannot beat them at that game. Some Big Wig set the Rules. Now, he was a rabbit in Watership Down and told another rabbit, “I've been thinking about what you said to the Chief Rabbit. Tell me, is it a sort of tremendous hoax to make yourself important, or is it true?"

Your TRUE value of Active B12 on 12 April 2005 was between 140.4 ng/L and 70.2 ng/L using the concept of between 40 and 70 % of Vitamin B12 is inactive.

However, some research shows that up to 80% is inactive which would take the value down to 46.8 ng/L. If plotted on a graph, this last figure would be called the nadir.

The antibiotics knackered your Gut Microbiome, resulting in poor metabolic and catabolic reactions in your gastrointestinal tract. Therefore, the synthesis of vitamins and minerals was affected. Plus, your histamine levels rose so that you developed contact allergies. Do you have problems with strawberries too ?

I do hope you have managed to regain some of your weight. It is a drastic weight loss.

So Rabbit can mean to talk and the other Rabbit was called Fiver. Us Brits refer to a £5 note as that.

I do hope now you are Self-Injecting or the like.

🐰

Jo5454 profile image
Jo5454 in reply to Narwhal10

Thank youNarwhal10 for a very wise reply:) you’re right that Active b12 would’ve shed more light on it way back then. My serum b12 result then at 234, was exactly the same as it was at time of functional diagnosis all those yrs later and my active b12 was on,y 27!

Yes, those antibiotics must’ve caused havoc, I was in late teens, ever the optimist and just kept taking what I was given instead of challenging it, I guess! It was before I learnt you have to do such things! Yes, the latex allergy appeared just after a particularly strong course of antibi, I hadn’t thought of it as histaminebeing high causing it though thanks. I’ve wondered over yrs abt histamine, but not investigated that. I have chronic sinus issues, always blocked through to inner ears,nonsense of taste, smell, but was told to live with it. I’m dairy free due to it being found on an intolerance test, and getting temperatures and ill after eating it.

Also gluten free due to borderline gliadin test but not sure about it really. Have had very high candida levels in blood at times which hasn’t helped. I need to reintroduce strawbs to see. Tend to cook most fruit as was warned I could develop oral fruit allergy prob, but recently found I’m ok with uncooked melon and grapefruit, which is bliss!

Started becoming more aggravated allergy wise before again, must’ve been linked to b12 defic worsening again after trying tablets for a while. Yes was given loading dose in March, b12 608 on tablets & neuro symptoms bad. Been put on 2 monthly inj now, instead of monthly, but working on it….

Yes thank you, at least about 7 stone 5 ish now, always eaten plenty, although very healthily. Instead of constantly asking about annorexia back then, they may have been better at least helping me get iron stores up for a start!

Thank you very much for your help…😀

Narwhal10 profile image
Narwhal10 in reply to Jo5454

Many of us Self-inject. No point fighting the GP Practice for more frequent ones. Lots of hassle.

Are you on Gluten Free Guerillas because many of us have lots of weirdo reactions to all sorts of shenanigans & buffoonery ? There’s a low histamine diet :-

histaminintoleranz.ch/downl...

and if you don’t know already about Diamine oxidase (DAO) enzyme may be something to consider. Available at Amazon.

I once had 20 grains too much of cayenne pepper and sounded like a cross between Darth Vader and Napoleon the pig from Animal Farm. Struggling to breathe.

Doctors are not trained in Dietetics. I stated to one Doctor, Any food which has more than 5 ingredients is equivalent to crack cocaine. Later during our appointment, he repeated it back (verbatim). Eureka, I planted the seed.

Yay about uncooked melon and grapefruit for you. Weird as it may sound, sniff the strawberry and wait 10 minutes. Then lick it wait 10 minutes more. Then chew it and spit it out. Like wine tasting. Only because if you do react, it’s gonna go through 9 metres of your innards. All those gazillion cells are gonna go, Help me Obi-Wan Kenobi, your my only hope.

At least you can say afterwards, Oh I had a cheeky little number, fruity, hint of je ne sais quips, reminded me of climbing the gym rope at school. The vintage was the days when everyone fancied Bugs Bunny in women’s clothing.

😜

Jo5454 profile image
Jo5454 in reply to Narwhal10

Thank you so much for your informative and amusing reply! Will look into histamine a bit more and the diet...guess my histamine must be fairly raised to have constant issues with sinuses? I was certainly reacting to more things prior to Cmas, before I was pretty much knocked off feet late Jan, so.ething was telling me it wasn't happy! I narrowed it down to what I thought maybe tapioca in gluten free bread,etc, due to finding its something that's been moved up the best not to eat on latex allergy list. The cayenne pepper sounded nasty!

Thank you for sniff, lick test,that's great idea. I've just tried tiny bits before,not thought of that! My nose is just a bit if a spare part on me, always blocked. Doesn't smell,but guess it would still work allergy wise like u suggest:)

Thanks again, no hadn't heard of gluten site either. I'm literally trying gluten free because the gliding rest came as borderline? Thyroid up & down & struggling to.put weight on, gave it a go. I have no idea if it's helping really as have had spells of not being gluten free and feeling much better than this in past,but darent add gluten bk in at a time.e when health's already struggling.

Read on here recently sourdough us very low gluten, can I ask yr thoughts on that please?

Maybe I'll get the lightsabre lit up and try some other things this wk, have got pecan, cashew & chia seeds at ready! Trying to keep broadening diet further. ...

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