And the beat goes on....Misinformation - Pernicious Anaemi...

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And the beat goes on....Misinformation

pollianna profile image

Thought I would share a tale.

Today my colleague who has M.S was chatting to me. He asked me how I am as I have Lupus and we kinda suffer together at work. I was telling him I feel much better and have been SI B12. I must add at no time did I ever suggest he should do this. I just wouldn't.

He was horrified. He said its dangerous, not the injecting bit the B12. He added his friend (who also has M.S) was told to get it down when sublinguals took him above the Lab range. A Doctor said this so it must be true!

He did not know I have studied medicine for 20 yrs! He told me I could ruin my kidneys and make myself really unwell. I reassured him its water soluable an he cautioned me again. "It may be but be careful".

I said I will, bless him. All this knowledge in the world and yet some of us are in perpetual darkness

10 Replies

I'm getting similar remarks from my GP at the moment.

When doctors talk that rubbish is it surprising that friends repeat it?

I want any test results to be >1500 pg/ml (the upper limit of the test) to support repair of nerve damage. I’ve been injecting cyano weekly for 8 years and take 4x 5000 mcg methyl sublinguals daily to fill in along with folic acid and a multivitamin, B1, B6 and TMG to support nerve repair.

My kidney and liver functions are tested yearly by my GP when I get my prescription renewed and so far no issues.

I love coffee but I’m off all sugar and sweets to avoid the diabetes my father had when he passed away and I have a celiac diet which is pretty limited, but so far so good and I feel my nerve damage and symptoms are gradually improving.

I think there is a thin line that is unique to an individual and I’m pushing that line based on my logbook of symptoms and how well they are identified and being managed.

Do you supplement with folic acid and a daily multivitamin as well for your lupus?

Do you and your friend keep logbooks of symptoms?

pollianna profile image
pollianna in reply to pvanderaa

Yes I take folic acid, magnesium, all the Bs etc..Love my magnesium!

I felt so sad for him. I would never educate anyone against their will so I just smile and nod. He is newly diagnosed and he has total faith in all the drugs and mainstream protocol. Maybe I am a bit too extreme the other way. I do feel that I learned this reaction from being at the mercy of those taking a punt with my physical and mental health. So far it serves me well. Less than a yr ago I was unable to sit up for 10 weeks straight due to sacral nerve pain. I refused the Gabapentin and Amytrypt as they were guessing about the cause of the pain. I have all but cured myself. I don't doubt that I would be on the drugs still and for years to come had I said yes.

It don't make me popular tho 😊

Marz profile image
Marz in reply to pollianna

I wonder what the VitD levels are in the MS sufferers ? It can be so hard to watch people not receiving the correct advice from the 'white coats ' ... Glad you could sort yourself 😊

pollianna profile image
pollianna in reply to Marz

I wonder too. I have learned that people who dont seek knowledge and rely on the white coats may need something to hold on to. Its not always about the truth but what the Doctor represents, the illusion of safety. This makes me so sad.

I was telling a doctor I had been taking DHEA for a year as I am over 50. I was replenishing my Hormones. He said he didn't know what that was 😢.

Its only the most abundant Hormone in the human body. I nearly slid off the chair in shock lol

clivealive profile image
clivealiveForum Support

Hi pollianna I'd better watch my step then as I've been on B12 injections for over 46 years and yet I'm still "clivealive" and 77 years of age. :)

pollianna profile image
pollianna in reply to clivealive

Amazeballs 😊

clivealive profile image
clivealiveForum Support in reply to pollianna

I was at first offered a diet of raw liver three times a day which I declined in favour of the injections :)

pollianna profile image
pollianna in reply to clivealive


If I have one more peimary doc tell me I dont need shots because my levels are too high, I’ll scream. I basically tell them my hematologist handles my B12 and I need injections for life. They wanted to take me off injections. I said, you’ll have talk to my hematologist for that. 🙄

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