ME Fibromyalgia and B12: ncbi.nlm.nih... - Pernicious Anaemi...

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ME Fibromyalgia and B12

Oneash profile image
7 Replies

ncbi.nlm.nih.gov/pmc/articl....

I just came across this study, which might be useful to the medics on here, or might be ancient history.

theguardian.com/society/art...

I was following my nose after reading this sad case. The parallels in symptoms with PA. I just wondered if this kid was ever offered B12 injections.

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Oneash profile image
Oneash
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Narwhal10 profile image
Narwhal10

Thank you OneAsh,

Are there any Medics on here ? Most are swanning of on holiday with their children as though they are allowed time off. They could have stayed in the U.K. as it going to be a real Bobby Dazzler. Highs of 28 degrees centigrade. Flippin’ scorchio.

Instead of going snorkelling, playing in the pool, shell collecting or a nice family meal out , they decide to read a lengthy research paper which focuses on 38 people. It’s not a very good cross section really, is it ?

I’m sure Dr David Strain, an honorary consultant at the Royal Devon and Exeter Foundation Trust would enjoy a lovely letter penned by your very good self to consider treatment of Hydroxycobalamin in cases of juvenile M.E. However, the hospitals are a tad busy because of the brawling in the streets. Far Right protestors throwing their weight about.

We are so fortunate that we have a monopoly on Fleet Street and the United States National Library of Medicine (NLM) is the world’s largest medical library containing some of the oldest and rarest works. Shakespeare borrowed some of it for Macbeth. When the witches chanted, Eye of newt, and toe of frog, Wool of bat, and tongue of dog. It is not literal. It is Middle English.

Eye of newt is a mustard seed which can be used for bioremediation. So, if someone gets poisoned by a heavy metal such as lead, this can help. Similarly the drug, Aspirin came from the Willow bark.

🧙‍♀️

Oneash profile image
Oneash in reply to Narwhal10

No 38 isn't a huge study, but it's clear that for those that had injections of B12, not pills, there was improvement. Medicine started with curious people. It seems that gets bashed out of folk at University.

We know B12 in blood readings does not correlate to effective use in mitochondria. We know B12 affects nerve myelin sheath and DNA.

We know B12 is not toxic in excess as a soluble vitamin.

We know B12 consuption is getting lower in the average diet, and it's downward spiral of absorption.

Most of us know every other day makes the difference.

So why not trial B12 injections for all these autoimmune, nerve troubled conditions, ME, fibromyalgia, motor neurone (I've seen a friend die of that one) dementia, and even bloody rioters who aren't thinking straight!

I thought this forum was covert medical surveillance anyway, not just a place to distract the ranters 🤪

Jillymo profile image
Jillymo

Hi Oneash,

At the age of 19 I were diagnosed with chronic fatigue from there it went to a diagnosis of ME. Bringing up my two children was a struggle, I were exhausted all the time. My husband didn't understand which caused difficulties within the relationship.

Dr's offered antidepressants which I refused due to them causing drowiness, I was lathargic enough with out adding to it. I sought alsorts of alternative medication to no avail it only robbed my pocket and didn't make any difference to my well being.

Later on in life I were diagnosed with thyroid issues, my hormones bounced about like a yo yo. I could be grumpy at certain times of the month that was for sure and my husband would lay low. My thyroid was over then under active, I were put on Levo. A few years later I were put on HRT which seemed to suit and my moods stabled. I were prescribed them to protect my bones !

Many years later in I were diagnosed with hypoparathyroisism and Hypocalcemia. Drs now took an interest, my condition was rare ! It didn't last, the novelty soon wore off and I became a number on a very long list once again. A long list of Autoimmune Diseases followed as the years went on I attended the london hospitals in the hope of getting a little expertise. A new diagnose of Antiphospholipid Syndrome raised its ugly head ( sticky blood. ) I was cruely taken off the HRT which put my body in turmoil. I were taken of the HRT because it could apparently cause me blood clots.

Illness has dominated my life and now in older years what with the B12 issues, neuropathy and chronic arthritis on top of everything else life has become a true bitch to try and live with.

Very few Drs and consultants undestand these conditions and I recieved little help over the years. Written in my notes is her quality of life is poor - tell me about it. When seen in neurology for my B12 deficiency the imbacile of a consultant tried to diagnose me with FND - I will stop there else I will swear.

Was it B12 the young lass in the paper was in need of or did she have a more serious undiagnosed condition - we shall never know.

38 in a case study what a joke.

bookish profile image
bookish

Hi, thanks for bringing this paper up for more attention. I found it a few years ago and raised it with a thyroid/ME/CFS consultant but he was uninterested, whilst acknowledging what huge improvement I'd made for myself..........hmm.........I do wish that more studies would look at other methylation/one carbon related SNPs as MTHFR is not the only player here. Lower doses of folinic or methylfolate could work as well or better than higher doses of folic. Did for me, anyway! Cheers

Marz profile image
Marz

Thank you for posting. Although the research involved is a small group the findings are so important.

I was diagnosed with FM in 2000 by a Consultant Rheumatologist. I moved to Crete in 2004 and was diagnosed with Hashimotos ( auto-immune thyroid) in 2005 at 59. As my thyroid treatment progressed the Fibro symptoms decreased....

My knowledge acquired from Thyroid UK and here, soon had me addressing B12 issues as my Terminal Ileum was removed at 27. I have not been tested for PA. I self-inject B12 weekly.

Symptoms of PA/Low B12 do resemble low thyroid. I often suggest that members here have their thyroids CORRECTLY tested as the NHS test is incomplete. 1,000's are left undiagnosed or very poorly treated due to the reliance on the TSH test or Thyroid Stimulating Hormone which is a Pituitary hormone. It tells you very little about how the thyroid is producing hormones needed in every cell of your body. PA and Hashimotos are auto-immune and often co-exist. So good to read the above link posted, suggests the connection with Fibro/ME/B12/Folate.

I was once a member of the Fibro Forum here on HU where I would suggest the correct testing for Thyroid - also B12 - Folate - Ferritin - VitD. I was banned as apparently I had my own Agenda. My suggestions were about ruling out conditions rather than confirming. I was not alone in my efforts - many of us were banned. It seems multiple drugs are preferred ??

If anyone here is also a member on the Fibro Forum - please post the link in the hope it remains there long enough to help someone. So many are suffering there and it makes for very sad reading. I'm allowed to read but not comment ??

Apologies for the rant 🌻

bookish profile image
bookish in reply to Marz

Good thought, done x

Oneash profile image
Oneash in reply to Marz

No apologies for ranting needed xx

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