OK, This is an update and a log of 7 days of a new injection trial. It is long! What I am going to do unless the moderators determine that is inappropriate for their very successful and valuable mission is keep replying to this thread. I am not comfortable with posting this level of depth in separate posts as it feels as if I am being intrusive.
Last February-March I crashed hard. I, to my satisfaction, established the reason was to no fault of mine and unknowingly I had used up my B12. I had not yet learned from this site that was possible. I did some trials and having returned to the USA after 6 months living in Scotland, attending my daughter’s wonderful two day wedding and a month of COVID I feel I am crash proof with my prior self treatment regiment. (See my profile for regiment used prior.)
That my last regiment made the pain of peripheral neuropathy in my rearview mirror combined with being crash proof lead to me being reasonably confident that I could go back to my current regiment if I made changes. It is not a given that I am crash proof nor that my current regiment will be successful later. I feel the risk of the new trial is worth the possible benefit.)
If I want a definitive answer about the best way to treat my B12 deficiency I can ask a medical professional. I will get many different answers all given with the same confidence. Until proven otherwise they will all be wrong answers for my body. “Until proven otherwise” is my highest level of confidence.
I doubt my body could have handled my current regiment and I would have been in extreme distress had I started this trial prior to my other trials. My body has changed. That is the point of my self treatment.
Current injection schedule; .75 mg methylcobalamin when I wake 3:00 am to 7:00 am. .5 mg hydroxocobalamin every 3 + hours as my schedule allows. .75 mg methylcobalamin when I go to bed. Works out to 5 to 7 times a day of injecting. SC
Day One: Felt good but do not attribute it to the change in injections. Went for a swim in the evening at about a 100 yards out my the tips of my fingers and toes felt like they had a thin layer of super glue on them. It was weird and went away. Came home and slept a lot.
Day Two: Got up at dawn ate and decided to walk around a pond where I like to walk. About a mile. It was hot and humid and I went for a quick dip. Wanted to swim but did not think it was best. Went home and slept. Went and hung out in a friends yard and had the thought that for that time of the evening I felt better than I had in 4 years. I sit there often in the evening. Figured out I had not eaten much and needed to eat. Accomplished that and had a ok sleep. I was noticing something weird was going on with my eating. Things were weird and new to me.
Day Three: It was not a fun day. Good in that I got information. It was different than before I self administered more B12. That I might have used up my B12 was an unpleasant consideration. Felt worse as the day went on. There was some pain that it was reasonable to attribute to peripheral neuropathy. It was of a different quality. I slept a lot!
I do not know nor does anyone else if the change in quality of symptoms was from administering B12 more often, the increase in Adenosylcobalamin or the addition of injecting methylcobalamin. And more important to me if it is the combination of the frequency and all the supplements I administer. I did walk a mile ½ in the woods.
Day 4: I felt better and went for a 1/4 mile swim which is as far as I could swim last summer. Looks like I may approach my daily ½ mile by the end of the season. That remains to be seen. Does not look like I will be able to do the occasional mile or ½ twice in one day. Breathing while swimming or walking is normal. At other times it feels like I am regressing with regards to that symptom. Seems to be working out as time goes on.
Day 5: Woke up feeling ok and better but not good about things. Leaning towards it is more about the addition of injecting Methylcobalamin and more adenosylcobalamin. I did wonder if the fatigue was worsening without an increase in brain fog.
Hunger is very different. I do not want to eat anything and then I am overcome with hunger. By the time I can prepare any food I am no longer hungry. I wonder if I am not headed towards “normal” hunger now that my body is not unknowingly trying to get enough nutrients. My weight is stable. Note: I have worked on my diet, eating ‘healthy” successfully with nutritionists. Successful in that I met the requirements well. Funny it had zero effect on my deficiencies. Go figure.
Day 6: Felt better and ate a small breakfast, a normal lunch although I was not hungry. Slept from 12 to 3 pm. Expect to not eat much and be able to sleep at least okish tonight.
I feel what is going on is my body is adjusting/healing in a more positive way with my new regiment and it is somewhat disruptive and my body needs lots of sleep. It is different from the reversing out I experienced in the past.
Day 6: I did not follow my stated schedule during the trial. I went with what felt best for now and would develop what was best for later. The base of my regiment stayed the same, the number of injections of .5 hydroxocobalamin varied from two to five. As bad luck would have it I spilled a vial of methylcobalamin and ran out during the trial and will have to substitute with SL.
Day 7: Woke up feeling better than I have in over 8 years. Does not follow it is the new regiment. I will be watching for a fade/down turn. My Methylcobalamin is arriving today hopefully so I may not have to substitute with SC.
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WIZARD6787
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Sleep may (or may not) be a good sign. Others have reported need naps when starting injections. When I first started injecting, I slept for three days straight and needed long naps for months. After a crash with some bad B12, and then restarting with good B12, I again needed frequent naps thought not as severe as before.
What happens when you inject a full 1mg/1mL of hydroxy?
I really wanted to sleep / nap.Lying down I always felt worse so would be propped up staring into space inhaling essential oils and concentrating on breathing.
Even now after 4 years my head is noisy with tinnitus and muscles tight as I try and lie down to sleep.
I often sleep for one hour then wake then sleep another few hours.
Always wake 0430-5 a.m the doze on and off.
Only know if a good sleep if take a while to wake up!
I applaud your day 7 WIZZARD6787
I don't think I would handle that much b12 without getting very 'wired'
Wish we could measure what level is ideal for us and a way to maintain it .
I often thing a slow drip continuously of b12 would be good !
Thank you! My 7th day is going along nicely. Left a penny last fall under a rock on a trail that goes up a mountain. Put it under a rock further up the trail.
>>Wish we could measure what level is ideal for us and a way to maintain it . That is two questions. I am going with that the only way to determine how much B12 I should inject is to keep taking more over time until there is no change. As my deficiency is life long no further improvement is not applicable.
Second part I am going with reducing the amount until there is no adverse effect. Which may never happen. The maintenance dose methodology is not even close to being shown to be possible. Unless one guesses what is possible for them or someone else does.
>>I often think a slow drip continuously of b12 would be good !
That resonated with me and I now inject much more often. If I wake up in the middle of the night I inject as long as three hours has passed.
I started a trial of hydroxocobalamin at 1 mg every other day a couple of years ago. Saw improvement and saw it as positive. I then did a trial of .5 mg every other day. Saw improvement. Then I did a trial of 1 mg every day. Saw improvement and saw it as positive.
Hemotologist said I should reduce and healing would continue. He was wrong and in 8 days I was in distress and it took 28 days to recover after going back to 1mg a day. I lost a month of my life.
At 14 months from DX my research indicated that B6 deficiency was likely based on symptoms. Most importantly the peripheral neuropathy. The medical personnel that wrote about successfully treating patients wrote it may be rarely DX. I injected a very cautious loading dose for a few days and it was wonderful. Then went with a minimal daily injection of 30 mg. Now I am on oral with no issue.
With enough B12 with other supplements I experience sleep much differently. Pretty much now I get tired and sleep and then am not tired which was not the case before. Still need a lot of sleep with the last change in supplementation. When awake I am not out of it like when fatigued.
I do not think in terms of positive self-treatment the 2 years 8 months from DX other than the regiment I have developed in the last 4 months. It was positive compared to what medical personal were capable of. I do not see that as a high standard. I use information rather than advice.
Sorry i missed your Day 7. Congrats! 👏 May it not take (too much of) a downturn. Glad to hear the type/quality of sleep has improved too.
I'm so sorry you lost that time due to the hematologist. You are wise to continue with what suits you best!
I was just curious about the 1mg vs 0.5mg for example if you feel it lasts longer. I've tried spreading mine out during the day but i seem to be the opposite - need the extra amounts all at one time. Except when it is very hot out - i seem to sweat it all out very quickly. We are all different.
I'm not really sure if it's that or we just metabolize it more quickly. During some of these bad heat waves or on vacation where it's really hot, i seem to need an extra injection. I go by symptoms.
I have had issues with body temperature regulation in the heat my whole life. It is not acute anymore and has not been with any trials I have done.
Prior to my current regiment I think I did have issues with using up my B12 in the heat. Guessing the added stress of the heat on my body was too much for the regiment I was on at the time.
How much folate/folic acid do you take with that regiment? Only what's in your B complex? I feel like the ratio between B9 and B12 is worth exploring... though I'm still not sure what ratio works best for me or whether I should just dose according to the blood level and keep that in the upper third (and not beyond).
I could not click and paste specifically the dosage of Folic acid.
It is not a B-complex although it does include the ingredients in one B-complex I reviewed.
It is designed for autism which is a neurological condition. I utilize it to treat/heal the neurological results of B12 Deficiency.
I do not experience fatigue to a degree that can be clinically attributed to folic acid deficiency and it has never tested low.
I looked into the relationship between folic acid and B12 and can only find that it is important and the folic acid test is what is used to measure it. I may do a trial in the future. I got my hands full and am improving right now.
I would definitely add it to your experimental regimen at some point in the future if symptoms don't fully resolve. Some of us need higher doses even when serum levels are good.
Thanks for that. I would not add folic acid without reviewing the science
My successful regimen is based on what science is available, ignoring the pseudoscience practiced by applied scientists in the medical field. 🙂 Critical thinking and imagination outperforms checkbox jockeys/flunkies. 🙂
It is now known that there are 8 different ways that B12 can not be processed by some bodies. A person might have more than one issue. Unfortunately that science right now comes from the scientists that study genetics so the treatment by clinicians is the same in all 8 cases.
That there is no test for the effective treatment of B12 deficiency so it is all anecdotal. The anecdotal evidence that is blessed by clinicians is skewed by their methodology to the point of harm.
Day 8: It was a day of suddenness. Something is going on with my body and I think it is positive.
I woke up not feeling good or bad. Did some stuff and about 11 very suddenly and acutely was very hungry. Had to eat immediately. It was intense. Luckily I had food ready. Things evened out and I went for a swim. About a 1/4 of a mile. Very nice when I turned around to swim back to the shore and it was a long way back and that was no issue. I do tow a buoy that is solid and can keep me afloat if I have issues.
I then went to the grocery store and got my favorite fast food. Swordfish. At about 6 pm I cooked the swordfish. It was hard to stay focused. It was delicious and I was suddenly acutely tired. A I could have slept on pavement tired. I slept on my bed for about and hour and woke up a good tired and did some stuff and had a good sleep.
I am two days into not being able to inject methylcobalamin due to spilling a vial. It worked out yesterday I injected 5 times. I inject either .5 or .75 mg depending on how long it has been since the last injection and what I have been doing or how I feel.
I did not go off the rails with my self treatment. A abandoned that train which is built on a very old foundation.
Day 8: Woke up feeling better than I have in over 8 years. Does not follow it is the new regiment. I will be watching for a fade/down turn. My Methylcobalamin is arriving today hopefully so I may not have to substitute with SC. Went for a walk up a trail off of the Gilson Loop toward the summit. It was fun. Breathing was hard. Moved the penny up. Did more stuff including seasoning frying pans. Hung with Robert but not a sit and do nothing thing.
Day 9: Woke up feeling OK not the thrill of yesterday which is to be expected. Breakfast is still an issue but we seem to be headed in a better direction. Methylcobalamin did not come in the post.
Day 10: It was a mixed day as some are. With time with a lot of different people. Went fine and have eaten three meals two days in a row. Weight is stable. No exercise with purpose and on purpose.
Did wake up at three am and injected.
Methylcobalamin did not arrive and am looking into what is going on with that.
Due to not injecting Methylcobalamin for 3 days and not knowing when I will be resupplied I am changing my trial. This will be day 4.
injecting Hydroxocobalamin .5 mg to .75 mg not less than 3 hours apart. At the same time 6mg of Adenosylcobalamin SL
Simple Supplement/Pyridoxal-5-Phosphate/Betine morning and evening.
Having administered Methylcobalamin for 10 days +- I will be looking for a downturn that might be attributed to the substitution of Hydroxocobalamin for Methylcobalamin which I administered morning and evening.
It seems I am able to tell quicker how changes in regiment affect me. It is somewhat counterintuitive to me in that it seemed that any change would have been more noticeable when the symptoms were more acute.
When the Methylcobalamin does arrive I will make a decision what changes to make if any.
Woke up feeling a bit off. Thought it might be the increase in exercise even though yesterday was a day off from exercise. Did my morning supplementation and checked to see which way the wind it does blow.
I checked on the status of the delivery of my Methylcobalamin. It was delivered this morning.
I was surprised, intrigued a a bit worried that i "wanted" to inject the Methylcobalamin. I looked at my notes and I had only missed 2.5 days of Methylcobalamin of my trial and did not find it credible that made that much of a difference. Still do not.
I mixed up the powdered Methylcobalamin so it would be ready for tonight's dose. It takes 20 min to dissolve and I give it an hour.
I thought about the trial and it seemed to me that I liked being me more when I was taking the Methylcobalamin as part of this trial and that I by taking the Hydroxocobalamin as was convenient I have not increased the amount to any great degree.
So I had about .25 mg in a vial that I planned on pouring into the new vial after I had used some of that vial up. I went for it and later swam my furtest distane in a year. That I went further is not as important as I swam "stronger" than three days ago.
So I am going back to including Methylcobalamin in my trial and see what happens. I expect further improvement.
Note: I have proven to my satisfaction by past trials that Methylcobalamin without Adenosylcobalamin is inferior to Hydroxocobalamin for me. Understanding my body has changed and that may not be currently the case. Plus I am now using other supplements that likely interact. And I am more active in all areas of my life.
Day 12: What likely happened is due to spilling 10 ml of methylcobalamin and a delay in shipping I experienced using up my methylcobalamin in three days. I was not experiencing using up my Hydroxocobalamin. It was a new experience as this is a new trial.
I reviewed my other trials and it correlates to my past experiences.
Although unintentional I am going to utilize this new experience/information. (I am very glad I do trials based on information and do not just "find what works for me" with a hunt and peck methodology.)
I woke up at 3:00 am and thought about things which I sometimes do. I do not see it as "bad" anymore. I do wait until what I have concluded sees the light of day.
I notice a change in the evening which makes sense as I inject methylcobalamin in the morning and right before I go to sleep for the night. I will observe tonight and see if it "feels" as if I have used up my methylcobalamin.
That more hydroxocabalamin was more effective has been established by my trials. That increased frequency of hydroxocobalamin was more effective has been established by my trials. The other supplements I take have been established as more effective by my trials.
Having thought about it I am going to switch the order of the last two injections and inject methylcobalamin as my next to last injection.
It is possible the hydroxocobalamin is not needed at all. That will take another trial to determine.
Accepting the methodology of making changes and then changing them back is still emotionally hard for me to accept. It is easier with my latest success.
I do accept that there are 8 known issues that my body may or not be experiencing with regards to B12. I reject that one treatment is the only one needed.
I do accept that my B12 deficiency is life long and progressed to PA. This is important to me in evaluating as my life long B12 deficiency was not linear. I did experience using up my "B12" due to environmental factors over which I had no control.
I expect that I can never supplement perfectly due to lack of knowledge available. I expect and hope I only need to come close enough for my body to adjust.
I am aware that if I wrote my experiences of life long B12 issues and what I experienced in the last 2 years and 8 months it would read like the manifesto of a madman. Excepting I do not think I know what everyone else should do. I do rag on those in the medical field as my best available scapegoat.
More on Day 12: So I injected methylcobalamin for 1 to .75 mg 10 days +- along with adenosylcobalamin twice a day. I saw it as positive. I then due to procurement issues missed a day and a half of doses, three. All other supplements were basically the same.
I then injected the last of my methylcobalamin .25 mg. at 5 in the morning. I then felt tired and slept. It was a different sleep. It felt like I slept in segments. Asleep then slightly awake then sleep. Over and over. Guessing for an hour and a half.
Then I faded in the evening but not as severe as 12 days ago. I then injected .75 methylcobalamin with 6 mg adenosylcobalamin. SL
The next day I decided to inject my methylcobalamin mid afternoon and see if that affected my fading in the evening. That had a positive effect.
I expect now my success with increasing my hydroxocobalamin to 1 mg three times a day was about flooding my body with cobalamin, enough so that one of the known issues with B12 that affect my neurological system was somewhat treated and the methylcobalamin with adenosylcobalamin is more effective than flooding.
In the 10 days of injecting methylcobalamin specifically my breathing improved, my hunger changed/normalized.
Due to the interruption of the methylcobalamin and perhaps just due to the strain on my body some symptoms returned, more annoying than anything else and I am as confident as I am likely to get they will recede within a few days. Specifically my toes are feeling weird my back is tight.
A weird symptom was that I had the acne that is not acne on my face that appeared this morning. After being awake for a couple of hours it disappeared. Being honest, I am impressed.
So I have redesigned my self treatment to adjust to this new information about my body. I am now factoring in cost which prior to now I have just ignored.
More on Day 12. I redesigned my regiment and posted it on my profile. With my trial which added injections of methylcobalamin with adenosylcobalamin my hunger and therefore my eating changed dramatically. Pretty much I have had three meals a day for 6 days. My exercise may have changed although that is not dramatic compared to when I started a different trial which may be simply the result of recovering from COVID.
I have been experiencing needing to sleep sometimes after eating. I am ok with that as I wake up more rested and it does not adversely affect my sleeping at night.
I did swim further than I have been but that is what I have done each season other than the two after I was diagnosed. Actually I did that the last two years, I was not able to go my normal distance.
I have considered that it might be best to take days off from supplementing to give my body a chance to heal without the stress of processing the supplements every day. It occurred to me that it might be best to not supplement right before bedtime to let my body do what ever it does during sleep. Which is unknown to science. A lot is known, not all and there are many myths.
As I have been supplementing right before bedtime for 2 years 8 months and did not make a specific plan tied into a specific time I found it was evening and I had not supplemented. I had the thought that if I sleep than I would be OK in the morning. I could tell the peripheral neuropathy was present. Call it a twinge.
I had no idea why I had that thought and I pondered for a while which is my highest level of analysis. The reason I thought if I slept I would feel better in the morning was I had similar experiences when being administered nitrous oxide for dental work.
I chose to only inject twice and do my other supplements and see if I could predict the outcome. That can be done if I have an understanding which is a world of difference from quoting what someone else that states they know what the outcome will be.
I predicted that with sleep the peripheral neuropathy would be gone in the morning and I would not do as well as I have in the last few days.
Day 13: I was correct and the peripheral neuropathy was gone and I did not do as well as the last few days. I went for a swim and it was not as easy as the last time I went. I felt off all day.
I decided to inject three times and not inject right before bed. I did not have a sense of what to expect after 4 hours of injecting. I expected an upturn and expected I would be hungry which I have not been in years.
I was hungry and it was hot and humid so I went for a quick dip in the lake after dark, which is my custom. I did not sleep well. At about 2:00 am I experienced slight hypothermia and took an advil and a shower and it went away.
At 4:00 am I injected. I am going to inject no less than three hours apart and no more than 5 hours if schedule allows. I expect to start feeling better.
I am currently injecting .50 mg of hydroxocobalamin and .50 methylcobalamin. I also take .6 mg of adenosylcobalamin SC because I can not purchase adenosylcobalamin. I am still working on the best timing.
We are all different. My goal is to self treat my differences in the most effective way. I now evaluate with how I am doing as symptoms are not severe enough to be a reasonable measure.
I will not be shocked if I abandon hydroxocobalamin all together. I understand it is thought to be best for more people than not. Thing is the measure of best is a matter of personal preference. As my B12 deficiency is life long I have no idea how well I can feel.
Day 14: Ya that is right around a week. I will call it a turn around if it keeps on going this positive. It happened to work out that I injected 1.5 mg of Hydroxocobalamin and Adenosylcobalamin three times. The last one at 5:00 followed by eating and a two hour sleep. It was a really have to sleep after eating thing which has become a thing.
I am not that worried about the having to sleep after eating. I wake up more refreshed and attribute it to my neurological system healing. Same with the suddenly needing to eat. (Hunger)
Day 15: The 3 days of substituting hydroxocobalamin in lieu of methylcobalamin and the 3 +- days of recovery was the only time where I did not experience daily improvement. Not a definitive result.
I did have a "acne" spot that is not acne for a few hours yesterday. I am also experiencing random pains with the frequency of the former lightning pain. It is not muscular. I am calling them short lived charlie horse as it feels like a charlie horse except it goes away within 5 minutes.
It does not seem scheduling the injections to end about 5:00 pm is not a good idea. I have only done it twice it and it "felt" like I was experiencing having used up my B12 a bit. Not at all hard data. I am not going to do that any more for now.
I think what may have happened with me not being able to keep on a five times injecting schedule was much about adding the methylcobalamin with adenosylcobalamin was an improvement so I did more in a day which changed the time I was away from the house combined with my body was healing and I needed more sleep.
Even though the trial was somewhat chaotic I find it definitive combined with the information gleaned from my other trials that injecting Methylcobalamin with Adenosylcobalamin SC and Hydroxocobalamin with my other supplements to be superior and therefore the most appropriate self treatment known at this time.
Critical thinking requires that I consider what other factors may be involved. My diet is better which I attribute to the change I am experiencing in hunger which is very positive. I am getting more exercise which I attribute to having more energy due to the change in injections. The weather is a lot less strenuous on my body this time of year and that will not be able to be evaluated until it is not. As I feel better than I did prior to contracting COVID that is not an applicable factor. That the improvement is simply the length of time I have been supplementing is not a credible factor due to the rapid improvement and the different quality of improvement.
Yes! I do wish I have started this new type of supplementation before. No way I could have known without my many trials. I find it unlikely medical personnel will ever improve their treatment unless scientists discover a test that is definitive. They at best use symptoms to determine what test or procedures should be done.
I find it more likely that B12 deficiency is associated with vegetarians as it is tested more often than any actual science. That is is found in older adults for the same reason and that the condition worsens over time.
I find that functionally B12 deficiency is becoming more accepted only due to the MMA and Homocysteine tests are now being more widely done. Resulting in somewhat better detection with no change in recommended treatment.
I was not incorrect when I stated I suffer more with less B12 and suffer less with more. I did not stop there and will not stop with my current more effective self treatment. I am going to keep on keeping on until August 01 and then reevaluate and decide what to try next if anything.
It is easier being me and in ways better than my whole life.
Day 16: Went for a longer swim. Closing in on a 1/2 mile. We will see.
Five injections a day is substantially harder to fit into a day than 4. I do not want to increase the dose per time based on instinct and cost. Still working that out.
If I do wake up in the early morning injecting seems to be effective.
In order to inject 5 times every day would necessitate bringing everything needed to inject with me or preloading two syringes. Thinking on that.
It did seem to feel like I had used up my B12 after I swam. Not definitive, I did experience incipit peripheral neuropathy but that could be attributed to the long swim. And there is no way to know if having B12 earlier would have made a difference.
Over all the addition of methylcobalamin with adenosylcobalamin is positive and a very very welcome change.
I struggled for a long time with the concept that a person could tell they had used up their B12 and never came close to feeling I could predict when to inject prior to needing it. Now I am considering I might be able to tell the difference between 5 hours as opposed to 3 hours between injections.
Feels like I have some unlearning to do which usually leads to grieving. My reentry into the USA was not at all what I anticipated. Damn COVID.
On the other hand I have only been back in the USA for 2.5 months and I have come far.
I ran out of Hydroxocobalamin. I was on a down slide and was considering paying the premium and having it shipped overnight. Preparing for injecting more than one form of B12 at a time I had Cynocabalamin on hand. I decided to give that a trial with Methylcobalamin and Adenosylcobalamin.
Needed lots of sleep and was able to swim 1/2 mile and the only recovery I needed was sleep.
Injecting 3 mg or more a day got me off the intense roller coaster of using up my B12 which I accepted as happening but not the only thing I could possibly experience. I did experience more steady improvement for the three months when I injected enough B12. I then started injecting more than one form at a time and the roller coaster was gone replaced with needing a lot of sleep throughout the day and at night. I am pleased.
There is a difference in results in the two tier testing used by the National British Formulary. A flow chart shown here theb12society.com/diagnosing. It is not scientifically sound to treat the two conditions as shown by testing to be different as the same thing. Actually it is bullshit.
I can not know which of the 25 processes my body uses to synthesize B12 are not working as they should. I can learn to treat them with more success than hydroxocobalamin alone and paying attention to the known cofactors.
Still a lot of work left to work it all out. Will not be applying what is thought to be true.
Day 20. For the last 4 days I have only been injecting 1 mg/.25 methylcobalamin and 2 mg SC adenosylcobalamin three times a day. Other supplements sporadically.
My intuitive intelligence indicated I need to give my body a break from healing and design another trial.
I am having unexplained issues with nausea and am trying to figure that out.
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Self injection update - as promised
Update of visit to the GP
How long until muscle twitches resolve?
How long is long enough
Is is possible to take daily injections of B12 for too long a period?
