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Two years later from near death. PA, low B12.

Geckowacko profile image
25 Replies

Two years later after near death experience due to PA. Neuropathy still alive, but changing very SLOWLY and still making progression.

I found out a website that sells ampules 5MG (5000ug A.K.A. micro grams) methylcobalamin the good stuff.

balans-arnhem.ccvshop.nl/We...

Website is Dutch.

Hydroxocobalamin is available on Amazon. I can't believe people are waiting for three In-between jabs. I still to notice neuropathy and symptoms increasing after 5 DAYS!! I self medicate three injections a week 1000ug, gonna increase to two times a week 5000ug. I believe high doses are needed to heal nerve damage. Also take high dosis of folic acid and supportive vitamins.

I believe I can cure my neuropathy with diet, vigorous exercise and overdosing on B12 and with added Wim hof cold therapy and heat therapy combined. I still am improving and life right now is bearable. Energy levels are pretty good, I can work, handle the children and daily activities. At my worst a 5 minute stroll around the block was too tiring, painful and stressful. I couldn't hold my phone for 5 minutes without getting burning pain through my arms, yet the doctor told me it was all in my head. It wasn't, you all failed to do your job accordingly.

Don't trust your doctor into knowing that they know how to deal with B12. The information they have on this condition is not one shoe fits all. Every person needs different amounts of B12, like each person with diabetes needs different amounts of insulin to survive. The condition is for every single person different. Trust your gut, if you think you need more B12, you probably do. The highest max save dosing is 5000ug a day, it won't kill you. You can even deal with 200.000ug on the short term.

Be well everybody and remember time is your best friend when it comes to healing, but also will power. Take action to heal, exercise if you can, go on a low Fodmap diet if you can, do mindfulness and wellness, keep on the fight. There is always ways to improve even though you're bedridden, you can improve by sitting on a chair for 5 minutes. Small steps will lead to greater steps.

It's true is very painful and hard sometimes. I've experienced the hell, but came out better and still am going upwards.

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Geckowacko profile image
Geckowacko
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25 Replies
wedgewood profile image
wedgewood

The Methylcobalamin ampoules you mention are the ones we have been able to buy directly from the manufacturer — Arnika in Munich . You can contact them and order by emailing them - manufaktur@arnika-apo.de or phoning them on 0049 89 452 468 468 They all understand English .Obtainable in 5mg x 1ml ampoules and 1mg x 1ml .

I actual tried them for a few months and found them no better than Hydroxocobalamin.ampoules .

Really pleased to hear of your progress , and thank you for telling us about it . It’s encouraging for others to hear . Well done for persevering . It’s an uphill task . But you give people hope when they can read about your progress. 👍👍👍

Geckowacko profile image
Geckowacko in reply towedgewood

Thanks, I was thinking about this. I wasn't sure they would supply to the average Joe/non business. Guess from your information they do, which is great.

wedgewood profile image
wedgewood in reply toGeckowacko

Yes , they supply private people .

waveylines profile image
waveylines in reply towedgewood

Thats interesting. Ive been thinking of whether to try methycolabin injections. I have daily si Hydroxocolabin but whilst i improved massively on these ( now nearly two years on) - cant drop the daily as I worsen. However recently Im finding my tremors have worsened despite daily so wasnt sure where to go next. Do you have to store the methylcolabin differently and does it come ready to use in the ampoules? Sorry to butt in on the post!

wedgewood profile image
wedgewood in reply towaveylines

Yes , the Methylcobalamin is less stable than Hydroxocobalamin and Cynocobalamin. Must be kept refrigerated. Yes it comes in ready to use single use ampules just like the ones you are using now . It’s just a bit more awkward to order . You need to email them first and ask for prices .They have 1mg ampoules and 5mg . Then you order what you want by Email , and they send them as soon as you have paid by PayPal or bank transfer . As I said , I found no difference from the Hydroxocobalamjn , but we are all different .

Nackapan profile image
Nackapan in reply towaveylines

Hopefully just a blip.

Some do get a reaction to methy b12.

I've read on here some feel irritated and agitated

Forewarned is forearmed incase you get that and wonder whars going on. !

TC

Nackapan profile image
Nackapan

Good to hear . Also in the 'timeframe " youve done so well.

e66-- profile image
e66--

Loved your post and found it so uplifting. I inject often and my legs are back to normal and I am walking like a human being again. I also do Wim Hoff breathing and cold baths.

I still have one abiding difficulty. I seem to catch every virus and bug circulating, including covid. Just can't seem to boost my immunity. It really drags me down. Did you ever experience this? If I could stop this happening it would mean the sun, moon and stars to me! Best wishes.

Geckowacko profile image
Geckowacko in reply toe66--

I have had two colds and a stomach bug all with fever during 8 months. Further more I'm starting to get pretty asmathic this allergy season, but I know it's cause my immune system has had a major blow and this can still recover in the next 5 till 10 years. Depending on my actions too and how healthy I live.

I'm increasing my exercise regimen and when Covid is over I'll be swimming and in the gym again. Kinda hard to do it the fun way, but I jogged 7 miles last week with ease. So I guess my conditioning ain't that bad. Mainly I focus on core, strength and functionality training and conditioning.

e66-- profile image
e66-- in reply toGeckowacko

If it helps I used to have the worst cough throughout the allergy season for years when undiagnosed. I now don't have it at all, so I really hope that it improves for you as well. I had a misdiagnosis of M.E for years, so maybe it will take a long time for my immunity to start working effectively. I still struggle with exercise as I tire really easily.

I'm glad you're making progress. This illness can test your resolve and endurance to the max. We have to dig deep, develop the spiritual and keep up the inner intention to improve. When I hear of others making progress it reminds me to have patience and believe.

Best of wishes.

Nackapan profile image
Nackapan in reply toGeckowacko

7 Mike's!! Amazing

waveylines profile image
waveylines in reply toe66--

Have you checked your vit D level? GP can do a blood test.....or rather you'll get sent to a set of people in white suits for one! I kept catching every bug going & would be really poorly each time....my bit D was extremely low so boosting it back up made a massive difference. .

e66-- profile image
e66-- in reply towaveylines

Thanks for your kind words. I take a high dose of Vit D and K2 daily, was very high when it was tested. I try to take everything. It's still a mystery why I catch everything. I even get flu twice in the winter, even after the jab! Just wish it would improve. No change after 18months of injections, maybe it will take longer to see a positive result. Other things have improved though, like my legs which now feel like part of my body!

Best wishes.

kittyflowers profile image
kittyflowers in reply toe66--

Is your Vit D level optimal? Very important for the immune system.

e66-- profile image
e66-- in reply tokittyflowers

Thanks for your kind words. When I had Vit D checked it was high and I take it religiously every day. I don't eat much meat, but have iron and injections. I wonder if my dislike of meat is causing low immunity? I wish I could just get to the bottom of the mystery.

Have great day.

kittyflowers profile image
kittyflowers in reply toe66--

I understand the dilemma. A homeopath would be able to help you with compromised immunity. I am a homeopath but not working at present because of all this B12 trouble. If you want me to suggest someone good let me know where you live

clivealive profile image
clivealiveForum Support

I was given two years to live when already a "Zombie" over 48 years ago due to P.A and was given the choice to either eat raw liver three time a day or have B12 injections.

I chose the injections and am still "clivealive" at the age of 79.

I wish you well

Emmers5 profile image
Emmers5

So happy that you are doing well. Thank you for sharing with us. I'm impressed by your dedication to exercise. That is one area where I absolutely fell apart and gave up when I was so ill and haven't worked hard enough to regain my strength. I'll make an effort.

Nackapan profile image
Nackapan in reply toEmmers5

I've tried but sets ne back at present. I walk round the block most days and thars it . 1/2 mile. If I stand on the spot I go very weak so have to kero going. Very bored of sane route but still have to stick to a circle.

e66-- profile image
e66-- in reply toNackapan

Well done you! Better than me! I have a really hard time standing still, when people hold me in conversation outside I start to panic! Hate always making excuses to get away fast as I am very sociable believe it or not! enjoy 🌞sun.

Nackapan profile image
Nackapan in reply toe66--

Yes I get that. It's the unreliability of our bodies. I actually sat in a boot of a neighbours car so we could have a chat lol.

e66-- profile image
e66-- in reply toNackapan

soo get you!

wedgewood profile image
wedgewood

Just be careful with high doses of Folic acid . ( look it up on Google ) High doses can be harmful 400mcg daily is sufficient , no matter how much B12 you inject . Luckily , one can’t overdose on B12 . Any B12 that’s not used get excreted in the urine .

Geckowacko profile image
Geckowacko in reply towedgewood

Thank you for the advice, I was taking 1400 total. Now just 400mg for a while and I'll keep at this.

waveylines profile image
waveylines

Thanx Kitty. I will! I have had two lots of hospital sedatives for two separate medical investigations......unless they depleted my b12?

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