Advice from healthy person with PA - Pernicious Anaemi...

Pernicious Anaemia Society

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Advice from healthy person with PA

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I joined this group months ago to see if I might learn anything in addition to what I spent years figuring out. From what I've seen many of you are still in the stage of desperately seeking relief. I know what that's like and feel that I should share with you what I learned and how I got healthy.

B-12....definitely a necessity....needs to be methylated B. Super high levels are ok.

FOCUS ON GUT HEALTH...This is cause of other symptoms, fatigue, depression, brain fog, etc. PA leads to atrophic gastritis. Take HIGH QUALITY PROBIOTICS every day forever! 70% of immune system is in the gut If it's not healthy, nothing is! PA is an AUTO-IMMUNE DISORDER. Follow the Auto-immune protocol paleo diet. There are many recipes, etc. online but for accurate information and explanation of why this diet works go to thepaleomom.com

DETOX - A huge contributing factor to auto immune disorders is the body is under a toxic burden, meaning your body can't handle anymore exposure. Most patients have multiple chemical sensitivity, meaning you can't stand the smell,of perfumes, go down the detergent aisle in store, etc. Need to,eliminate exposure where possible, do things to detox WHEN HEALTHY enough to handle. This will require Dr or healthcare practitioner to ensure it's done properly

I am in U.S. so not sure how easy it is to find a Naturopathic Dr or someone similar

It took years to,get an accurate diagonisis and years to get relief. I've learned a lot in the process and I promise you if you get your gut healthy, you will feel amazing. It takes time and effort but you know the alternative. There is no magic pill and unfortunately most allopathic Dr's do not understand the healing powers of food and supplements. Hope this helps!

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9 Replies
fbirder profile image
fbirder

For almost everybody methylcobalamin is no better than cyanocobalamin or hydroxocobalamin. Indeed, it's not as good, being harder to source in injectable form, more expensive and less stable.

in reply tofbirder

Cyanocobalamin contains a cyanide molecule...cyanide is poison.

Gambit62 profile image
Gambit62Administrator in reply to

the amount contained in a molecule of cyanocobalamin is extremely small and is very tightly bound to the cobalamin - so very hard to release - you are much more likely to suffer cyanide poisoning from smoking or even by eating the pips of many fruits.

hydroxocobalamin is used in enormous quantities as a treatment of preference for cyanocobalamin. In the process it is converted to cyanocobalamin.

There are a very few individuals with a rare genetic condition - Lebers - who have a particularly sensitivity to the cyanide molecule who should not be treated with cyanocobalamin - but can be treated with hydroxocobalamin.

Unlike yourself, CJ2000, many people find that methyl cobalamin does little for them or, as in my case, certainly doesn't deal with all of the problems. Some people actually find that they react quite badly to methylcobalamin.

Treatment for B12 absorption and metabolisation problems is very individual - the genetics are not well understood and are hugely complex - what works for one person won't work for many others.

Some individuals have problems converting methyl to adenosyl cobalamin - the other form that is used at the cell levels. This will leave them deficient in one essential form of B12 if they are relying on methyl. The same problems don't exist if the source of B12 is cyano/hydroxocobalamin

fbirder profile image
fbirder in reply to

Apple pips contain cyanide.

Indeed, there's more cyanide in one pip that in one cyanocobalamin jab.

Gambit62 profile image
Gambit62Administrator in reply tofbirder

there was a recent case of someone who managed to poison themselves with the kernels from cherry stones - thought they would be good to eat. However, I'm not worried about eating cherries and occasionally swallowing a pip as it's really difficult to break into one.

Jennylind profile image
Jennylind

I'm sorry to hear you've had such a long (and expensive-sounding) route to feeling well.

For most people with PA, achieving the correct level of B12 (and folate), seems to facilitate recovery.

in reply toJennylind

That's great if they get relief but PA is an auto immune disorder and the gut is affected. I'm also a healthcare practitioner and nutritionist and work with physicians. If the gut health is mot addressed

in reply to

If gut not healthy immune system isn't either

shaylynn profile image
shaylynn in reply to

Looking for answers to getting inflamed gut healthy enough to start taking HCL or ACV. Right now too inflamed and painful to even tolerate these.

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