If I inject less than one ml of B12 l... - Pernicious Anaemi...

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If I inject less than one ml of B12 like half ml is that still does work?

Hamayeshguy profile image
14 Replies

I tried half ml or less with higher frequency and I think it works with less worsening symptoms. Is there any minimum amount of injection fir each session? I think If less nerves get affected by B12 injection but with higher frequency it can be more helpful for people with lots of neurological symptoms. After I tried to increase my frequency after 29 days my dizziness relapsed. I'm just wondering why old symptoms relapses.

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Hamayeshguy
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pvanderaa profile image
pvanderaa

I’m currently in weekly 1 ml cyano 1000 mcg/ml and inject 0.5 ml on Monday morning and the rest on Thursday morning. I feel that I don’t pee away as much as injting the entire 1 ml once a week.

Also the high after injection is lower and I don’t run out of steam before the next injection . I’m still aggressive/hyper on the day of the injection, absolutely normal on the second day and a bit thick/foggy/tired on the third day but still more or less functional.

However, I’m living a busy, stress filled life and feeling pretty normal. Thr more the stress, the faster I run out.

I supplement with daily methyl sublinguals to fill in gaps and folic acid and a multivitamin.

Hope it works as well for you. You double the number of syringes.

Hamayeshguy profile image
Hamayeshguy in reply to pvanderaa

I used to inject everyday but this stop of injection reset my tolerance. But my symptoms are pretty much extensive band I can't live a normal life. My stomach muscles feels like completely tormented and now I feel sever weakness in my back and thigh muscles. My dizziness was improved but after last injection relapsed. My eyes still blurry but improved and also I have double vision but improved. Tinnitus, hand tunnel carpal and numbness in hands. Actually I was on the line if improvement but my iron dropped and it wasn't even detectable in blood work then by trial and error I found it's iron deficiency because iron deficiency in muscles makes B12 symptoms hundred million times worsen. I was in agonizing situation and then I started to take iron and it healed my pain right away after taking and by some body movement in couple of days it completely back to just B12 deficiency and there was no more muscle iron problem. But as soon as I started to load B12 first day half ml and second day one ml my symptoms reset to couple of months ago but I learned this half rule and wanted to know if it's helpful then I follow that regime.

pvanderaa profile image
pvanderaa in reply to Hamayeshguy

Are you supplementing with folic acid? This (folate) gets used up quickly when on B12 injections.

I find that the symptoms I get after injection like upset stomach, diarrhea, pain, are actually good indications that nerve damage is healing. It is very counterintuitive. I think these appear to be worse if I’ve become more deficient before the injection due to stress, worry and exposure to sunlight/UV-B light.

I found the “good” symptoms by using a log book ans first eliminating gluten protein and casein protein (dairy, whey) from my diet. You may not have these dietary issues but it doesn’t hurt to try eliminating them for two weeks and then reintroduce them slowly to your diet to find any allergies.

The muscle pain in particular after injection for me is really an illusion in the brain of the stronger signals on the repairing nerves. Gentle range of motion exercises like Tai Chi help stimulate nerve repair by movement of the muscles. The longer I work/exercise and tell myself that the pain is “good” helps the brain recalibrate faster and the pain disappears.

Overactive gut and diarrhea on the day of the injection I think are caused by two methods: 1) nerve repair of the nerves in the gut stimulate movement, 2) metabolism of all the cells in the body produces water that it takes a while for the kidneys to remove, the gut doesn’t remove as much water during this time and so soft poos and lots of dark yellow urine.

For me, the sarker my urine after injection, the more deficient I was, or the more sunlight I had exposure to the day before the injection while working outside.

Hamayeshguy profile image
Hamayeshguy in reply to pvanderaa

I take 400 mcg methyl folate along with b complex. Now I bought 1000 mcg methyl folate to see what happens. I'm going to switch to hydroxycobal amin also. But my symptoms are so bad and I can't even go for a long walk which I used to. My symptoms are intolerable for an inpatient person like me.

pvanderaa profile image
pvanderaa in reply to Hamayeshguy

Gentle range of motion exercises stimulate nerve repair and get the brain to recalibrate to the stronger signals and helps eliminate the pain from nerve repair.

I found that I couldn’t compare day for day to monitor progress, I was impatient as well and just couldn’t get used to the roller coaster ride after each injection.

The logbook allows you to monitor progress by becoming your long term memory.

I started it before I started self injections. I started recording a symptom and a corresponding severity score (1-5) each day. Some days I had 5 or 6 symptoms and some days none. As I monitored, I noticed additional symptoms and tracked them to see if there was any correlation to the injection or to food, drink or other medication. (I found gluten and dairy intolerances using this method.)

One idea I found useful was to reset the logbook to day 0 on each injection and then compare severity of symptoms on day 1 with the previous day 1. Likewise day 2 was compared to the previous day 2. This allowed correction for the roller coaster of high and lows of symptoms.

Progress was then monitored by seeing that the severity of the symptom had improved each cycle. Some times I noted a symptom reappear that had disappeared for a while.

The logbook also allowed for changes to treatment where symptoms were not improving. However, each time I adjusted treatment, I left it for at least two weeks and monitored. Changing more frequently just creates chaos for monitoring.

Nerve repair, if possible, is very slow (like years) but you can see very small improvements by using the logbook which gives you confidence that the treatment is correct.

For the impatience, this could be one of your psychological symptoms, so if you are able to measure its severity, you can monitor it as well. For me, it was my level of anxiety.

As you improve, symptoms disappear and you only notice if they come back again. As they disappear, you start doing more and more and get stressed and run out of energy simply because you are more active.

For your treatment, get on a regime and be very strict with yourself to stay with it for at least two injection sequences (minimum of two weeks if injecting more frequently). Don’t wait for a symptom to appear before taking medication because then it is too late as sometimes symptoms don’t appear until three days later because the gut is involved.

Hamayeshguy profile image
Hamayeshguy in reply to pvanderaa

I was so energetic at the first six months but suddenly my ferritin dropped because of mild exercise and it wasn't even detectable through blood work. It was dropped to lower than 23 then I stopped everything for a month and it recovered to 34 but my muscles started to ache with pain 10 out of 10 then I started to take iron pills and my pain and extreme weakness stopped right away. In six days completely recovered but frustrated me so badly so I decided to move and live with my family. Loneliness is the worst part and I have to fix it.

pvanderaa profile image
pvanderaa in reply to Hamayeshguy

I can relate to the loneliness. You really have to get through this yourself as even family members do not fully understand.

The psychologist symptoms are secondary to her he neurological damage but you feel them first.

I found it hard to monitor psychological symptoms as I had to try to look at myself from outside and ignore the emotional component while assessing the severity.

Acknowledging psychological symptoms is the first step to dealing with them. There is no embarrassment to acknowledge to yourself that you have such symptoms.

Glad you have your family to support you.

I found this forum full of people who were just like me and who already had the experience and in many cases also had the correct solution.

Hamayeshguy profile image
Hamayeshguy in reply to pvanderaa

My neuropathy is really so severe but I have lived in a very bad mental situation for long time since I left family and I think just family can help me to get back normal life along with injection and nerve damage control

VellBlue profile image
VellBlue

I went from 1 ml every four days to 0.5 ml every other day as a) could see that once every four days was not enough, but also b) noticed mild effects in the aftermath of the injection (just kind of a pinging on the nerve ends), a feeling of too much B12, which I preferred to avoid. Basically, there was a four day symptom cycle. After going to every other day 0.5 ml, there was no more of the symptoms of needing more injections or having too much, was very comfortable.

However, my B12 symptoms slowly returned, so have upped to 1 ml every other day, which my body seems to be able to take well now, and feel so much better.

Hamayeshguy profile image
Hamayeshguy in reply to VellBlue

You have PA or just deficiency? I don't know why my symptoms got worsened after last injection. I didn't have this problem in the past. My muscles lose their strength after injection and make injection symptoms intolerable. In the meantime why your symptoms slowly relapsed while you were on injection?

VellBlue profile image
VellBlue in reply to Hamayeshguy

I found I became very weak (like I have never experienced in my life) on methylcobalamin injections, but was fine on hydroxocobalamin.

I had a long term b12 deficiency which was left untreated for some time. I have been tested for parietal cell antibodies and am negative. My deficiency was caused by repeated use of a type of antibiotic that my neurologist said strips out B12 combined with long term vegetarianism.

My symptoms relapsed on the 0.5 ml injections because I wasn't taking enough. Once I upped it to 1 ml it improved.

You just have to see what works for you. Take the 0.5 ml injections if that seems to be working well for you now. You may build up tolerance and be able to manage more later. That's what worked for me it seems...

Hamayeshguy profile image
Hamayeshguy in reply to VellBlue

Thank you. I'm gonna give a try to hydroxycobal amin. Doctors ignorance was the cause of my b12 deficiency. After my previous GP on 2014 told me my b12 Total is low and needed to have monthly shot I had only 4 times shot and my GP moved other city then I asked other doctors to give monthly shot but they refused since my blood works didn't show deficiency anymore and since I didn't have symptoms in that time just moved on but through time my symptoms started to show up untill September 2020 I experienced macrocytosis but doctors even couldn't ask for further tests and just based on trial and error found that it's B12 deficiency so asked GP to give my shot but after 4 times and blood work stopped that then I was on pills for seven months and finally I found this forum and started cyanocobalamin injection. I think it works for me but so slow. I was on injection for six months and had some improvement but out if the blue weird symptoms put me in severe agonizing situation and even test didn't show any abnormality and by trial and error I found it's iron deficiency in muscles and not in blood after taking iron pills right way my symptoms backed to just B12 deficiency in six days. And tried to get back injection but this time I would see I have intolerance. So I decided to have a new regime of injection in order to raise frequency of injection without worsening my symptoms.

lynxis profile image
lynxis

I use 500 mcg for 2 days in a row and then 1000 mcg on the third day, injecting every day. I was able to cut back to that from 1000 mcg every day but haven't been able to reduce more than that, and if I am very active I still need to use 1000 mcg daily.

Hamayeshguy profile image
Hamayeshguy

My symptoms get worse if I inject with high frequency. I think people with severe muscle symptoms have the same problem and I need to find a way to increase frequency. Thank you for sharing. Are on hydroxycobal amin or methyl / cyanocobalamin?

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