Results of 14 day trial.: 20 days ago I... - Pernicious Anaemi...

Pernicious Anaemia Society

31,973 members23,121 posts

Results of 14 day trial.

WIZARD6787 profile image
5 Replies

20 days ago I started a 14 days trial of 1.5 mg of methylcobalamin and 0.5 mg adenosylcobalamin 5 times a day and setting an alarm to inject in the night. The result was positive and I am 6 days into another trial which is positive.

As expected with improved self treatment I experienced a short up tick and then my body needed to adjust Specificialy: sleep disturbance, anxiety, minor heart palpitations, sporadic vision and hearing issues, minor back pain, pain in my shoulders and the obligatory digestive system issues. I experience these symptoms for a short while when making a change that is eventually positive and attribute it to my neurological system healing. I have these experiences everytime I improve my supplementation and with each improvement to my regiment the effect on my neurological system is less severe and shorter lived. The improvement is dramatic once things settle out. I always need more sleep and rest. It has never been wonderful. These symptoms are not severe enough to be diagnostic for B12 deficiency.

The first 7 days of this trial I experienced an upset stomach. It is hard to accept that my digestive system is controlled by my neurological system due to being so conditioned to see digestive issues as something else and not related to my injections.

I also experienced body temperature regulation issues during the night. This was experienced as mild hypothermia; chills, body aches, stuffy head etc. I have studied this phenomenon and know to self treat with Advil, showers and an electric blanket. It only lasted a few hours instead of the days or week when under supplementing.

Pretty much every aspect of my life both physically and emotionally has improved over the last 14 weeks even with the lack of sun and light available, due to increased frequency and amount of B12 injections. Not yet wonderful.

I have designed my next trial. I do not wait for someone to tell me what to do. Nor do I follow those that can only guess and find what works. I also do not accept anyone's else belief all I can do is manage my PA. I manage my healing.

I am working with the principle that at some point I will increase frequency, form or amount and there will be no change. I am aware that this will take time. Weeks/months not years.

I have experienced feeling that I have plateaued only to find it was the level of neurological function to which I was accustomed.

I will be forever grateful that those on the forum allowed me to write as I explored and discovered. I will be forever grateful for the information sources that were disseminated. Without that information I could not have come to the conclusions that allowed me to design protocols that were healing.

However the advice that I would heal eventually if I just waited was a belief based on nothing credible.

There was information on B6 deficiency which was based on one paper by nutritionists which was on the level of a content writer reviewing products rather than science. If I do not take B6 100 mg day I suffer the pain of peripheral neuropathy needlessly. I have no idea if this is true for anyone else and the only way anyone will know is to do a trial in a competent manner as the test for B6 like B12 is not definitive.

Written by
WIZARD6787 profile image
WIZARD6787
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Wwwdot profile image
Wwwdot

Wiz

You are a force of nature!

So inspiring to read of your protocols and results.

“However the advice that I would heal eventually if I just waited was a belief based on nothing credible.” SO TRUE!! I do not see how after years of decline how it is conceivable that severe B12 deficiency can be healed with one jab every 12 weeks! Utter unfounded nonsense!

We need trailblazers like you to show what can be achieved with a more open mind, more frequent injections and a more holistic approach to recovery.

Whilst each of our healing paths are different - common factors are complacency and blind trust in NICE (UK) and medics in general elsewhere which are unhelpful at best, and at worst harmful.

Keep on rowing your own boat my friend, as I am following in your inspirational wake!

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787 in reply to Wwwdot

More of a source of confusion than a force of nature. 🙂 Thank you.

I don't write about it but the UK is light years ahead of the USA with regards to B12 treatment, neither choose to follow any guidelines and the guidelines may be adequate for some certainly not for all although that is their brand.

I have 8 days left on a trial and I am considering calling my B12 injections good enough for now and looking for ways to change what I do in life. Thinking along the lines of pushing physically and recovering and hope my neurological system follows. Might just be I am looking for an easy way. I have 8 days to let my minds work on it.

I forgot I had posted this writing. I reread it and it almost seems like I am making sense. 🙂

>>Utter unfounded nonsense!

Are you channeling Technoid? 🙂

Wwwdot profile image
Wwwdot in reply to WIZARD6787

Hi Wiz

Oh my giddy aunt if the UK is ahead of the US - remind me to be grateful 🤣🤣🤣

Last weekend I was out of my comfort zone on a 6 mile hike - I was ready to stop halfway but it was- circular route so had to carry on.

That evening I was in a tiz - could not get to sleep - odd sensations throughout my body. I was worried that I would “pay” dearly for my fun hike the following week … but no I didn’t! A little more tired than normal but I am still getting through a working day with success and although I still need my jabs, I am not exhausted to the point of breakdown.

An interesting development is that my body is not always reminding me that it’s time for the next injection - ironic as I am just about getting into the 4 hour routine - which is interesting as this was not the case pre-hike. So, has something shifted in the healing? No idea, perhaps? Maybe? I will have to observe and analyse later. Coincidental that this is similar to what you are reporting so more food for cogitation.

I am being thick about the Technoid comment - please expand!

And no … not a source of confusion to me - breath of fresh air as what you describe makes sense … most of the time 🤣🤣🤣

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787

Thanks for sharing. I am thinking of creating a hole in time when I have lots that can be done and nothing that needs doing. Then push physically and see what happens. I will have the time to recover if it goes bad.

I can now read, do the rubik's cube and juggle at all times of the day which for a while I could not do at all. I can draw but not always. An option would be to do an art project and hope the physical follows.

I am pretty sure trying to do both would be not good.

I am less than 60 days from being able to open water swim. I would love to have the B12 and other supplementation the best it can be by then.

As I write I am pretty sure I will keep going with my work on supplementation and hope the neurological and physical follows as it has in the last 15 weeks.

>>And no … not a source of confusion to me - breath of fresh air as what you describe makes sense … most of the time.

You can imagine what I write that is not acceptable given what I write. 🙂

That is a phrase that Technoid uses when she does not agree with something. I keep waiting for a balderdash and poppycock. 🙂

SuperhydroIM profile image
SuperhydroIM

Excellent, aggressive treatment. I do inject hydro methyl and adeno too. Not so much as you cause cant afford but also my anxiety would kill me 😁 I eat 2:1 fat to protein no carbs. I eat red meat only and at least 5 eggs every day, also mountains of butter. I eat around 4000cal a day. I love NAC. Carbs are evil to my body and mind, sadly. Life is a rollercoaster but it is good. I am thankful I can buy what I need and self inject at least eod. I also inject B1 B2 B6 B9 when I feel so. I heal myself, my doctor is full of himself and useless. We are powerful and we are winning this.

You may also like...

My experiences with B6

just my body adjusting. 8 days later I took 50 mg liquid sublingual B6. Slept for 3 hours in the...

Therapeutic trial - how do I know if it's working?!

whether the B12 is helping?! I'm getting an injection every other day and have only had 3 so far....

Designing new trial

due to my body healing too fast. After 3 days I started injecting 1.25 mg three times a day and...

Anyone injecting 2x/day?

started B12 injection therapy roughly a month ago. Convinced my GP that, due to my neurological...

Feeling better so soon after B12 injections?!?

of B12 deficiency symptoms after starting B12 injections to proactively readdress B12 deficiency,...