Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Is she cured?

Dec 8, 2016 | Patient Stories & Support, Pernicious Anaemia

I first met Sheila in 2009. She was in her late twenties and was struggling to continue teaching in Further Education as she was still symptomatic. Sheila had travelled to south Wales from her home in the north of the Principality to receive an intravenous infusion of Methylcobalamin from the late Dr. Riar.
“I get no relief from my three-monthly injections and by the middle of the second month I am really struggling to concentrate on my teaching and the students’ progress is being affected. This is my last hope”.
Sheila received the infusion and was told to inject 5mg/ml three times a day for a month. She phoned me after two months:
“Nothing has really changed. I felt great for a week after the infusion but I’ve gone downhill again”.

Sheila and her partner John, both lecturers in Further Education, decided that they would follow their dream and live off-grid in an ecological community. They quit their careers and settled down in the wilds of west Wales five years ago and earlier this year purchased several acres of countryside complete with a Christmas Tree Farm that had never been harvested.
Sheila got in touch with me via Facebook.
“I haven’t had an injection for over a year” she told me. “I’m using natural food supplements to deal with my condition”.

I had to find out more about this and so, last week, in the middle of an unseasonal cold snap I was driving through the narrow lanes and backroads of rural west Wales. I came to the village nearest to where the couple had settled and followed a track that led to their homestead. In the top of the field, nestled under the pine trees was the caravan that was the temporary home of Sheila and John as they set about building an eco-home out of logs – they had received planning permission for this under an ecological-friendly policy of the Welsh Government.
Sheila came to greet me and for a few minutes I just took in the almost too idyllic view that was had from their new home. The bright winter sunlight reflected off the rolling, unspoiled Carmarthenshire countryside. Streams sparkled in the sunlight’s reflection, small spirals of smoke rose from isolated farmhouses and drifted on the light northerly wind. This is a quite beautiful part of the world.

We went into the comparative warmth of the little caravan and Sheila began to explain.
“When I lived in north Wales I had a brilliant Haematologist who was prescribing weekly injections. And he was also carefully monitoring my blood. He said to me one day, ‘you know, your haemoglobin readings go down in the days before your injection. And that means I have the scientific evidence that you need much more frequent injections than other patients’.
He had kept all of the readings in case anyone questioned why he was giving me so much B12 but nobody ever did. My own GP just used to shrug his shoulders and admit that he couldn’t understand it all”.
I should, at this point tell you that both Sheila and her partner are very, very strict vegans. Sheila was 9 years old when she made that lifestyle decision and has always taken B vitamin supplements. But the veganism was not the cause of her B12 Deficiency – she has the Intrinsic Factor Antibody so has Pernicious Anaemia; or maybe that should be had Pernicious Anaemia.

I asked her about her new treatment regime that doesn’t use injections.
“I’ve enrolled on a two-year course to become a qualified homeopathic nutritionist; and what I’ve learned has really opened my mind. I’ve learned that micronutrients that are so important to the immune system are simply missing from modern diet. And I’ve become aware of some incredibly clever people who are now able to produce these micronutrients; that’s what I’ve been supplementing with.
Sheila stood up and opened a cupboard above my head. She reached in and set out six different plastic jars containing various pills and powders. She explained what each one did and where she bought them from.
“I’ve never felt so well’ she told me; “nor have I been so happy” she added looking out of the caravan window.
I expressed my concern that this was uncharted territory and that she risked developing nerve damage if she didn’t get adequate replacement therapy injections of B12.

“Oh I know that, and I’m constantly monitoring how I feel. If I do start to experience any pins and needles or numbness I’ll go straight back to the injections, but for now, I’m fine”.
Sheila still sees the Haematologist in north Wales.
“I’m going to see him next month” she said, “he wants to know if anyone is doing any research into this – can I ask him to contact you?”
Of course, I told her that would be fine and, after shaking hands with John, and having a hug from Sheila I got back into my car and drove slowly through the lanes, admiring the views every so often.
And then I joined the M4 motorway and rejoined the mad, hectic world of the 21st Century and hurtled towards my home at 75 miles per hour.
I wonder if the Haematologist will contact me?

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  1. Denise Macgregor

    I am now curious to know what these micronutrients are. Can you say?

  2. Kimber Spencer

    I am curious about what these 6 bottles contained. Can you please tell us?


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