This is the first day I will have spent the whole day with friends and injected and taken SL B12 instead of skipping it.
The results expected is I have a wonderful rest and do not need to recover. I know I will have a wonderful day.
I am not yet sure if the reason that I am doing so much better is because of the increase in B12 or the frequency.
My body acts like it needs B12 continuously. Most likely a transcobalamin issue which is what 25 % of all people who are treated by doctors for B 12 deficiency experience. Not correlated to genetic testing so the rarity of that is not a consideration. Treatment in the UK is regulated to a maximium amount of 1 mg of B12 every other day which is not scientifically based although it seems to be adequate for some. Could be that they accept that is all they can do.
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WIZARD6787
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No way am I changing anything right now. I feel too good to want to mess with it!😀
I am working out the informal argument in my head. The formal argument is simple. Where A equals more frequent dosage than current understanding and B equals feeling better. A equals B.
The informal fallacious arguments against more frequency will likely be two. First it will be Argument Ad Veracondium. The second will be Ad Hominem.
As I wrote it occurred to me that I could take the same amount of B12 by injecting the three times a day and administering in between with SL.
Current protocol.
.50 mg SC Hydroxocabalamin and 5 mg SL methylcobalamin/adenasolcobalamin three times a day and a B-complex once a day. I also take Pyridoxal-5-Phosphate .25 mg liquid in water twice a day.
A factor to consider is I take three different forms of B12. Perhaps my body is using the different forms differently. It is a complex process to be sure.
I am very very intrigued and I would be very interested in trialing different approaches because I am finding this ratchet , up and down approach hard to cope with.
You are very clever and thank you for sharing. I will do my own research now as well.
OK this is what happened. I met up with my friends and we went about town and had breakfast. I decided to inject back at my flat rather than carry a syringe etc with me on the road.
We ended up in the hills of Scotland laying on the grass by a stream and watching the sheep in the distance. A few eagles happened by. I got up and sat in a tree. I am not from here so I do not know what kind of tree. It was in the Betula family. It occurred to me that if I had B12 sublingual with me I would take it. This lead me too I could take B12 sublingual in between injections. I came back to my flat and administered B 12 sublingual. Then did my normal protocol right before bed.
So yesterday I got up at 7:00 am and had a wonderful day. Went to sleep at 11:00 am and slept well until 7:00 am. I do want to rest and will likely take a nap today. It is not recovery. I am well pleased!😀
The medical knowledge of the efficacy of sublingual administration of B12 is minimal, The medical knowledge of the amount of B12 to administer in a 48 hour period is dismal and is more about politics than science. The medical understanding of the efficacy of administering more than once every other day does not exist. The medical knowledge of administering different forms of B12 simultaneously does not exist.
I feel much better and am optimistic that I can self treat using critical thinking and current medical knowledge and feel much better. I am not inclined to suffer following current medical 'applied science'.
My current protocol:
.50 mg SC Hydroxocabalamin three times a day 5 mg SL methylcobalamin/adenasolcobalamin three times a day. Once in the morning with injection and twice and a B-complex. I also take Pyridoxal-5-Phosphate .25 mg liquid in water twice a day.
I am going to add 5mg SL of methylcobalamin/adenasolcobalamin when I feel I would benifit from more B12 and it is not yet time for my next injection. Guessing this will happen some afternoons when I am having a wonderful or challenging day.
OK this is what happened. The day after my big day I did not do much at all and rested. This morning which is the second day after my big day I came to understand I was experiencing brain fog/fatigue. I did not recognize it as it was minor compared to my past. I also expect that on my big day I have improved enough so that my adrenal system was able to supply adrenaline the way is used to need to do and still does as that is what it is used to doing.
I have always got up in the night to eat something. Perhaps my body trying to get B12. I decided to get all set up and inject .50 mg hydroxocobalamin. I did get up and that was too stressful to manage so I took 5mg adenosylcobalamin (33%) combined with methylcobalamin (66%). SL. I thought to my self if I am correct and that is what my body needs than I am going to need sleep in the morning. I got up ate a little something and took a shower. Sure enough I had a most wonderful sleep. I had thought to my self that I right now am always feeling much better at night and wondered if that is because that is the time in a 24 hour period that my body has the most B12.
I have experienced shooing pain in my toes and jaw and I have theeth acke. This was all but gone away. It is not fun. I expect that my body is healing as it has B12 more often. Possible it is too much B12. I am hopeful it goes away.
It does seem that with more B12 at a higher frequency that I can tell in much less time what the effect of any change is.
Here is the thing. I understand and live that I do not understand nor am I ever going to. When I started doing that I understood that is true for everyone. Thing is I can reasonably predict based on experience and critical thinking.
If you only administer 1 mg every other day until symptoms stop improving than you can not know if symptoms would improve with more B12. That is logic.
When ever I increase my frequency/amount I experience pain in my neck and shoulders that goes away in a few days or less and I attribute that to release in tension.
I cannot know the affect on my body had I made the changes that I have made with regards to amount and frequency had I done them from the beginning. I expect it would have been too much improvement to take and devastating. 2 1/2 years is too long for me to feel better.
Going to keep going reporting as it is helpful to me.
I am experiencing a slight intensity of symptoms with my new regiment. It is not distressful it is disconcerting. However they seem to diminish somewhat daily which makes sense if my issue is transcobalamin deficiency as well as intrinsic factor deficiency . Pretty much my body feels like that is what is happening based on how quickly more B12 affects my symptoms.
As I write, which is one reason I write, it came to me that my red blood cell and white blood cell count was marginally above range 5 months ago. The counts were extremely low when I was hospitalize 2.5 years ago, requiring two blood transfusions. I understand my success if I am successful will not be attributed to my understanding or efforts. Just "well we are all different" and the medical field will ignore or think these things happen.
What if my body was producing more red and white blood cells in an attempt to mitigate the lack of transcobalamin? If so my blood cell count may now be within range.
It is hard to schedule more than three injections in a day around having a life. It is hard to get the rest I need. Nothing for that. I do the best I can with administering SL as a substitute for the fourth injection.
Going with instinct/intuitive intelligence for a bit. Last two days I have gone to bed and read about 11 pm and get up at 7 am ish. Do so stuff on the PC to prepare for heading back to NH in 20 days and then shower and sleep again. Just seems like the thing to do.
Pain in jaw and toes gets very intense does not build and is of short duration. Went for a nice walk this afternoon.
Tomorrow I am starting a trial of Betaine Anhydrousat the level athletes use for performance. No toxicity issues. I have come across Betine mentioned in trials done in other countries when treating B12. I had what I believe was homostien build up issues now and again.
Homocysteine is an amino acid. Vitamins B12, B6 and folate break down homocysteine to create other chemicals your body needs. High homocysteine levels may mean you have a vitamin deficiency.
Wow it has only been 5 day since I have posted about my Big Day. I have improved a lot in that time!
When I take a pain reliever, Tylenol etc. which is rare I often take a shower to experience the effect sooner. I am finding it is best to inject right before sleep and take a shower. I then sleep about 8 hours and get up an eat and then sleep again. It seems as though my 'second' sleep get shorter each time. I wake up more rested!
I have started taking the 2 grams of Betine twice a day. No immediate results one way or the other.
My overall plan is to stay with my current regiment for 20 days until I leave for NH. I may on some SI SC and or take SC as my schedule allows including sleeping. Maybe some yoga or Tia Chi in addition to my walking.
I have rearranged my travel arrangements so I can inject with only a 13 max hour interruption and will use lozenges which has worked for me in the past. I want to avoid syringes etc in my carry on. I am OK with them in my checked bag. Not happy without a prescription but will go for it.
Over all I have arbitrarily set a temporarily limit of 5 mg of B12 of injections per day. This is from the most robust application from two case studies which I have no idea where I saw them.
Depending on how the traveling affects me I may make adjustments when in NH. I can not make any drastic changes as I do not want to be messed up for my daughters wedding.
I am experiencing more normal hunger and am having to adjust to that.
This is what happened; I administered 2 G of Betine yesterday morning. It was not the miraculous relief like when I injected 80 mg of B12 18 months ago. Being honest I was disappointed. About mid day I was out and about and it came to me that I felt better physically than I had in about 4 years. Not a symptoms are less just felt better. This continued and I enjoyed it for whatever it was. about 5 pm I administered 2 G of Betine.
Around 9:00 I still felt better physically and took a shower and went to bed at 11:00. Woke up about 3:00 am and I was experiencing itching on my right leg. Nothing major. Woke up again and the itching was now on both legs some random spots on my body. Still minor. Got up this morning and my scalp itched a little bit.
It was obvious to day was going to be a day of recovery as my body was healing from taking the Betine. Do not care if no one but me knows this to be as likely true as anything I have read. Anywhere.
Everything is going to be hard today. More energy will be needed. Symptoms will likely flare up a bit. Going to need lots of rest. It will be a do the best I can thing. Expect it will be short lived and shorter if I rest. The reason is the Betine is effectively a co-factor. That and due to my regiment I am starting from a much better place than even a week ago.
Third day of administering 2 G of Betine twice a day. I was correct somewhat that yesterday was going to be harder. It is weird. It feels like some subjective symptoms are getting worse and others are getting better. The pain which is minor is not a good indicator of success of my self treatment at this point for my self treatment.
It seems to me that when I make any change be it more B12, a different form or different administration of B12 there is a immediate 'uptick' in how I feel and then a 'down turn' from the immediate 'uptick' Then in about a week things even out and I am confident of positive results. Same with when I started supplementing with
With the exception of injecting B6 that was immediately positive and any decrease negative. Understanding it might have been the B6 in conjunction with the B12.
It seems to me in this moment with supplementation the best way for me to evaluate is to reduce/eliminate and then it is definitive that the change was positive.
I can see why medical personnel do not want to deal with anything that does not have a definitive lab test indication improvement. Not excusing them for not doing what can be done and pretending to me that they are. I am more OK with they personally need to believe they are doing what is right. Nobel Cause Syndrome. To date other than the two blood transfusion and testing the medical people I have hired failed. Not really adversaries as they do no want to harm me. More antagonists as they are in the way which is harmful as there is a waste of effort. Dealing with arrogent people is bad for my health.
On the plus side I forgot to mention that on my Big Day? that those I was with who love me did comment I was doing much better. That is an important evaluation.
I work with recognizing cycles of what I am experiencing as best I can. Some people would see it as a patterns.
Since administering the Betine I wake up in the morning and am frustrated and 'off' Then I eat and shower and the rest of the day I am 'on' and go to sleep feeling pretty good about things and sleep well. Hard row to hoe not being sure that I am supplementing the best I can.
Good news is I have nothing else major to try as far as supplementation goes. I can adjust things. Hopefully I will not run into procurement issues when back in the states.
I have as a practical matter not done any research on testosterone or thyroid. Have to wade though the medical myths.
The itching seems to be on the wane. It is interesting that I have a slight rash at the injection site which may be caused by Homocysteine release.
Yesterday the pain was higher and more frequent. Not distressing, more disconcerting. It was a good day and a big day in its own right. I worked with a embroidery guy and am working on a rose to have embroidered on the sleeve of my shirt for my daughters wedding. He sent me some samples and they are awesome. I went out and about and ended up waling 4 miles all told. I felt 'on' other than the pain which did not escalate.
I got caught up in the excitement of making the embroidery happen and never got to my shower and nap.
I was hungry in a way with which I am not familiar.
A dear friend came by and we chatted till 11 PM and then I ate and went to bed. I did take 5 mg SL methylcobalamin/adenasolcobalamin 66%/33% when I woke up at 3 am. Slept until 7 am and took a shower and slept for a couple of hours , it is 5 pm and I am still going strong and no pain. I am more 'on' for longer without the feeling I am going to have to 'pay' later.
Looks like the Betine is a very positive. We will see.
5th day of Betine. Walked 20 min a a pace that would have caused a flair up in the recent past. No issues.
Some itching. It is minor and in different places on my body. It is often one leg or the other. One bad lightning pain last evening and that is about it.
Am experiencing emotional flooding. Likely processing that I could not do before.
Hunger is still different than the resent past. A some times actually want to eat rather than am able to sometimes.
Unless there is a down turn Betine is positive for me. It is no longer a worry to me that there was another cause. I expect the B12 can work differently when I administer Betine. I am at a dose that is used by athletes for performance. It is advised that more than 4 g can cause issues with blood cholesterol levels. I will work out if I want to try a higher dose.
6th day of administering 2 g of Betine twice a day.
Positive! So far.
Seems the being tired from the Betine is on the wane but still present. Trying to not go past being tired which I am very good at having done so much of it.
Symptoms of itching on legs is diminishing. I experience it only at night which I accept as part of my body healing. My neurological system works differently in the dark. Don't care at this point if anyone else's does or they believe it does not.
Nice long wall in the evening. That was not possible in the recent past.
The justification to try a trial of Betine was in large part based on Homocysteine being referred to when reading about B12 deficency. It was in part of reading some case studies on the treatment of B12 in China. Pretty much creative thinking and intuitive intelligence. It was helpful to review the symptoms of Homocystinuria.
I rejected spending the effort in trying to work with the medical personal I have to deal with as being a less viable option than doing a trial.
My 5 months of intense immersion into the study of B12 deficiency in Scotland is coming to a close. I need to prepare to leave and then travel.
When I get back to the states I am going to take this show on the road and see which way the wind does blow.
I am well pleased with the experience. Results not so much. I am hopeful.
The itching on my legs is gone at least for now. reasonable to predict it will not return.
I popped off to the shops and it occured to me that walking up the hill now felt like walking down the hill!!!!!!
My Plantar fasciitis wants to come back but only minor and in my right heel. Less today than yesterday. Likely more reversing out that could not happen before.
What has seemed to work best the last 7 days is to get up do somethings including supplementing and eating then take a shower and go back to sleep. Yesterday I was all emotional about leaving here as well as getting ready to leave and then be in the states and did not get my 'second sleep'. This morning I woke up and was going to supplement and decided to take a shower and sleep. Good move!
I expect the needing extra sleep and the way I get it is so my body can heal. I do not see it as fatigue as I wake up rested and have energy the rest of the day.
I do not have the inclination to look for other solutions as far as diagnosis or supplementation.
i have noticed a pattern that started after two blood transfusions and starting to self inject and was coviniced I was doing what needed to be done to prevent permanent damage. I would change supplementation be it form, type or amount this was followed by a uptick then a down side as I reversed out. I would do so much better I was thinking I had the solution and all I had to do was wait it out and I would improve. Then I would keep looking and finding something else to try and go through that process again.
There are times when I think I am ready to add something pretty big like join the local recreation center and start swimming. Then I have something else to try and go through that process. There is the factor that when I came to Scotland 5 months ago I was in the all I have to do is wait and I will heal. I now understand that the stress of the travel and setting up my flat caused me to use up all my B12 during the first two moths and the next two were horrid. I then came up with a new regiment and improved.
Reality is I have been improving in the last two years since self treating. I am traveling again and will be dealing with the stress of reentry to the states followed by my daughters wedding. I am in the phase of my process where I am anticipating great things ahead and am working on tempering that and setting the end of June as the time I can reasonable expect to act and not just react. What is best is to heal as much as I can until the end of June. Oh bother.
8th day of administering 2 g Betine twice a day. Which means my body has been utilizing Betine for a week.
Positive!
My most troubling symptom is pain in my neck and shoulders which I attribute to stress being released as my neurological system heals.
I started to organize the 'stuff' in my flat in preparation for leaving. It was very emotional for many reasons. One of them being that I came across items that reminded me how I was suffering when I got here 5+- months ago.
I stayed with that before jumping to how far I have come.
I worked on how to evaluate the effects of my self treatment. It is hard. Part of it I like being me more when I am experiencing things that are novel. I work with is it about is recovery needed or simply rest.
Part of what I am experiencing is not dissimilar to when I used to be a ski racer. I would do all the prep work and gain as much knowledge as I could. Then I would get in the gate and go as fast as I can.
Part of what I am experiencing is not dissimilar to when supervised building buildings. I would be told I was doing it wrong by others to which I would reply "I will call you when I am done and on to the next one and you are still screwing around on yours."
I have attended 7 different colleges and universities. I am accustomed to taking my education in a different direction than educators. For me that is the purpose of education and training. Much about the treatment of B12D seems to me to be more similar to a high school science project than not. OK, junior high school.
I am working out what I want to take from my experience from here to my next experience back in the USA. It is back to my house but not back to doing everything the same. Not how I roll.
I am looking at what I want to bring to the USA. Kinda the opposite of trying not to bring baggage from where you last lived.
I know I am going to bring my current supplementation regiment with me. I know I am going to bring my getting up in the morning, do a few things, eat, take a shower and then sleep. This seems the best way to deal with not going past a tired which I am good at. What happens is some days I only sleep a couple of hours. It seems that when I have good day the day before I need my sleep to heal.
I love the water here in Scotland. I am considering going to a local spring and bottle water to drink. I am aware the minerals will be different. Better than our tap water for sure and may be better than the bottled water I can purchase.
I am going to take this forum with me. Although I will be reading and writing in a different time zone.
Other than that I can think of nothing that I will take with me other than my knowledge and my growth.
The produce in Scotland is fantastic. That can not be replicated due to climate and soils. No not even in my own garden.
I may have to bake my own croissants. I just looked up the recipe and can see why they are not available.
As I write, which is why I do it, I can see I have higher expectations for when I get back. I 'see' me going back to the way I lived 4 years ago. That is not going to happen right off.
I can put off the swimming until the water is 10 degrees C. That would be a couple of weeks. That is silly that is not happening. I am going at least do immersions and likely put on my tri suit and give it a go.
I have many wonderful places to hike. I will limit it to 4 miles a day. That I can do. I can not take the time to use my kayak knowing I can go in the fall when I can no longer swim. That will work.
I make marbles. Hey I am a wizard. I used to make them in studios. I am ordering the gear to make them at my house. Not a studio yet, but I can make them outside this summer. I have 20 to make for guests at my daughters wedding June. I am working on the composition which is 80% of any art I do. It is good fun and exciting.
Pretty much I enjoy what I am experiencing right now and expect to enjoy more in the future due to supplementing Betine 8 days ago.
My supplementation is a system and the sum of the parts are greater than any one supplement!
Two weeks before I was to leave and reenter the USA after 5.5 months in Scotland I started to do the work needed to leave here and get things set up in the USA. I planned on two weeks based on what I experienced when I did that in reverse to move here. At the time I was administering 25 mg B6 Pyridoxine hydrochloride and 3 mg Hydroxocobalamin twice a day and improving.
(With the help of those on the forum I switched to P5P.)
Due to my improvement due to improved self-treatment I finished for the most part in 5 days instead of two weeks. I also did other fun things which would not have been possible 5 months ago.
I reviewed the dosage of Betine in relation to the known toxicity. I have an understanding on how those levels are set and feel I can look at those levels with an understanding on how that is changing as more information is being added to a larger computer data base. Pretty much any reports of averse effects are taken as gospel without any real robust information. Useful but not to be treated as a scientific certainty.
6 g per day of Betine is reasonable. The only risk of a higher dose known is that cholesterol level may rise. That it is THE cause is not credible. Weight and physical activity are not considered factors when evaluating supplements. Ludicrous! I happen to not have any issues with cholesterol. Likely based on my failed attempt to mitigate the effects of misdiagnosed B12D with diet.
I reviewed the dosage of Simple Spectrum which is based on weight. It is recommended that the dosage be gradually increased to 2 scoops a day for my weight. I am at 1/2 a scoop twice a day.
So going forward I will do trials of increasing my B6, B12, Betine and simple spectrum. I will also add some cyanocobalamin. Then when and if I stop improving I will do trials of cutting back. I will keep hoping someone comes forward with a solution other than this is the best you can feel.
I would like to write that I am proceeding judiciously. Fact is I am thoroughly weary of all this. I am also fearful the travel back and my daughters wedding will be followed by another downturn. I think my treatment plan is now robust enough to prevent that. The proof will be in the having done it.
Often I think I really cannot handle doing any better right now.
Yesterday afternoon I did not feel great. Nothing major. I thought it best to experience a day of rest as best I could to give my body a chance to heal.
Mid afternoon I went for a walkabout. Ended up down by the River Clyde and having a conversation with a native of this area who has never been further away than London. It was a wonderful chat, at least for me it was. Guessing we spoke for an hour and a half.
I had to leave as my feet ached. I was in more distress about this than I thought was warranted. I thought about it as a walked back to my flat along the River Clyde, which is conductive to such an endeavor.
It came to me that the aching feet when standing was not new and what had happened is I have not had reason to stand in a while and had learned to avoid doing so.
I walked along and the ache/pain was greatly diminished. Pretending to be an adult I went back to my flat to rest and do some tasks. I recovered and felt pretty good so I went for a walk in the other direction on the River Clyde. I walked yesterday a bit over my 5 mile a day self imposed limit.
I am going with the ache/pain was healing/reversing out now I have a more successful supplement routine. Not fun. Nothing for it.
I can not really pinpoint the time when after the initial uptick of administering the Betine stopped and morphed into 'reversing out' It is because there is an overlap. Hence the non-linear.
In any evaluation I check for unknown causes as best I can. Things I changed and mistakes is understanding.
It is possible had not started the trial of Betine I would have improved anyway due to cumulative time of administering other supplements. I find that unlikely due to the increase in speed of feeling better.
I take three supplements in water twice a day. The latest being Betine. Possible that the 36 oz of water is the cause. I do not find this probable due to the intensity of improvement. The weather has been nicer and I have got more sun energy. This was true the last two years so I do not find that credible.
I have things to do to alleviate the foot ache. Soak my feet in Epsom salts and change my inserts. I did not take these measures as I wanted it to go away just because of the supplements I am taking and wanting that data. I did not figure out the measure is going to be when I happen to stand for 1.5 hours after walking a couple of miles.
In hindsight it would have been best to take the precaution as I am not going to get any data until I stand for 1.5 hours, which I am not going to recreate. In my defense I am a manly man and an american dammit. 😜
It just came to me that now I know I am avoiding standing I may be able to evaluate based on that.
I have been working on the being aware that when I think I may have issues breathing like coming to a hill that I get anxious and that causes me to have issues breathing. That is effective and led to be some times feeling like I was walking downhill when I was walking uphill. It is morphing into more and more I can take a deep breath at will and that is how I am working on that now.
Got up feeling pretty good decided to have a proper breakfast, eating it triggered my Trigeminal neuralgia. The pain was in a different place and as bad as it has ever been as far a level of pain. It was short lived. It started as a shooting sharp pain on the left side of my face. It was intermittent then the pain got closer and closer together. It was not a bring me to my knees pain it was a break out in a sweat and weak in the knees pain. It was different than it has ever been and I am attributing it to my neurological system healing in a way it could not before my current supplement regimen. Hoping it is a trading a dull pain for a sharp one that is going away.
I took a shower and put hydrogen peroxide in my ears. It does seem that the ears feeling like they are clogged precedes the Trigeminal neuralgia. Just figured that out on a new level. Very good to know. Been trying to find something as a tell all day.
I ended up being able to sleep and woke up feeling reasonably drained. Regrouped and had a better day than one might expect.
I do not think I over did it other than I am doing more and enjoying myself more. I am more and more convinced that eustress which is positive stress allows my body to heal and that causes pain sometimes. Before it caused fatigue but also allowed me to heal.
5 months ago I had to only walk ⅛ of a mile in the woods or risk Trigeminal neuralgia, it was not this sharp and lasted a lot longer sometimes ½ a day and I would not be able to sleep.
Yes I am scared it will happen again tomorrow morning and be worse.
I decided to go for my evening walk although take it easy and not go as far as I normally do. I reached for my Pacer Poles and a light went on.
Simplistically Pacer Poles were designed to use the whole body when walking and results in less perceived exertion. What happened is because I was feeling so much better I used my Pacer Poles and although I limited myself to 10,000 steps a day for the most part I was exerting more. Hence the ‘reversing out’ which was is fact using up the available B12 at the cellular level because I experience transcobalamin issues.
So I went to sleep and was experiencing pain and tingling in my feet which I was not prior to my trial of Betine. At the time I went with it is just ‘reversing out’. I woke up in the night as I sometimes do and thought the ‘reversing out’ was more likely not enough vitamin B12 and injected again. Went to sleep for a couple of hours and woke up and the pain in my feet was gone.
I believe I and many others have experienced reversing out symptoms. The concept of the reason is the nerves 'coming back online’ does not hold true for me as it comes and goes even after over the top loading.
What I think has happened is due to administering Betine and Simple Spectrum my body needs more B12 because my body can utilize more.
It is important to how I look at my self treatment to understand I have been functionally B12 deficient my whole life which progressed to almost dying. I did not experience symptoms linearly throughout my life. At times of the greatest stress in my life I experienced symptoms after the stress was gone. Pretty much I lived on adrenaline with periods of recovery. It is a huge adjustment!!!!!!!! There is no going back to how I felt before as I was always B12 deficient.
I forgot a very important factor in the last two days. I can now take a deep breath almost at will so I do often. This is changing how my body works. Sometimes not being able to take a deep breath started 50 years ago. It was only at times I could not take a deep breath. It has been much more of an issue last couple of years or so.
12 day of administering 2 g of Betine twice a day.
Positive and that trial is over. I am not inclined to increase or decrease at this time. I will consider reducing in the future.
In 7 days at this time I will be on a train to Glasgow to catch a plane to Heathrow. Have dinner in London, stay in a hotel then take a shuttle to the airport and fly to Boston. I will be picked up by a friend and go to get a saline drip and then to my house and car in NH. If all goes well. That is a wild card and having an effect on how I feel.
So this is the second day of increasing my hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. I knew I would try a trial of some sort when I got to NH. My evaluation of the last few days was my nerves were telling me they needed more B12, based on my experience.
I suspect that my body can now process B12 in a way it could not prior to administering Betine. Hence the need for more.
I only have .50 syringes so I am injecting both sides of my stomach. It was a matter of convenience. The effect of an injection administered that way may effect the way my body experiences B12 injections. How is likely not going to be determined. The concept of administering in this manor intrigues me.
So this is the second day of increasing B12 injections. From my past I expected my ears to feel like they are full of water. That happened this morning and I treated with hydrogen peroxide. Caught that earlier than the past.
I expect that my legs will itch and will treat that with moisturizer and will try and catch that earlier than in the past.
I expect to be more tired but not fatigued and will try and not go past being tired. I have learned that it is helpful to take a shower and then sleep. No matter what the time of day I come across a tired.
The die it is cast.
Not only is successfully self treating B12D hard to take there is also a high degree of difficulty. Treating others successfully seems to be straight forward as long as one does not consider the outcome.
13 days Betine 2 g twice a day, 3 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum for a month +-
Positive +!
In hindsight I would have been well served had I increased my B12 prior to starting both the Simple Spectrum and Betine.
It is hard emotionally to increase the B12. I read some case studies from China and they administered 5 mg/ day with Betine. Kinda hanging my hat on that. They were treating known genetic defects,in children and adults that did not die.
I have never increased my B12 and not been glad I did.
I was going to write that some symptoms did return. The usual suspects. It occurred to me I would never refer to anyone elses symptoms as "the usual suspects" that was helpful to me.
It seems that the symptoms did not come back as of yet with the intensity I expected. I did notice a few but as I was having fun and doing better than expected I just noticed and experienced them. I did get emotional at times. I see that as a good thing.
The risk now is I try to skip what works. Due to those expressing they sometimes skip injections to their detriment I don't think I will make that mistake.
The risk is I will try and not do my shower and sleep in the morning. When I skip that it is negative about three days later.
My no appetite is back and I know how to deal with that. Expect in a few days I will experience the needing to eat right now thing.
This all is still not predictable. It is less unpredictable.
I use as a measure and tell about how I am doing with how I feel about administering my supplements. If I start to think maybe I should cut back I am doing well. Start wondering what else I should supplement not so much. How hard the process is to accomplish is a tell.
I am going on a two day adventure with people I love and that will give me data on how to approach my travel back to the USA.
14 days Betine 2 g twice a day, 4 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum for a month +-
Only 4 days. I may be in a honeymoon period from more B12 which may be followed by a down turn which I have experienced before. Does not feel the same. I am hopeful.
I did not write yesterday that I was more tired as expected. 14 hours of sleep. Yesterday I was tired earlier in the evening and it was a case of I needed to sleep or would have to recover for a few days if I did not sleep.
As good luck would have it I did end up standing on my feet yesterday for a long time which three days ago caused my feet to ache. That did not happen!
I wrote that my Plantar Fasciitis was flaring up. The pain is diminishing each day and I have not cut back on my walking! I now expect that it is those nerves healing in a way that was not possible prior to my new self treatment regime.
I was thinking about things as I walked along the River Clyde. I was considering that I might do discovery and exploration then design a way to rehab. Hoping I had designed a way to self treat that was appropriate for what I experienced with B12D. I started with what I knew was how to train and that rehab was going to be different. Thing is I know a lot about training and nothing about rehab. I am thinking now that I want to train in lieu of rehab. It is what I know and will make me feel the best. That is for later. Right now I have to work on getting from her back to the USA and then being in the USA. Have to figure out how to do the supplementing on the road and the eating thing which I am not good at. I lost 7 pounds during the travel here.
The grieving of leaving my most wonderful home in Scotland and leaving those I loved before I got here and those that I have come to love while here is hard. Really really hard.
16 days Betine 2 g twice a day, 6 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum for a month +-
It has been 21 days since I posted My Big Day? Two days ago I went to Edinburgh did not sleep during the day and stayed up until midnight. Stayed in a hotel and spent the next day in Glasgow then back to my flat and went to sleep at one with no sleep during the day.
The improvement has been remarkable with the changes in supplementation in the last 21 days. I did only inject twice two days ago.
I injected in a parking lot yesterday and came to understand that I still experience unwarranted shame about injecting. Have to work on that.
Me current tell is my ears feeling as if they have water in them. If that starts to happen the pain in my jaw will start unless I treat with hydrogen peroxide. Just now figured out there may be a connection with the peroxide compound and B6. Certainly would not be known. Any way it is effective.
So it is pretty much getting ready for travel than traveling. Will do what is working as best I can. Supplementing is the easy part.
17 days Betine 2 g twice a day, 7 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum for a month +-
I feel healthier than I have felt in at least 3.5 years. I could make a case for my whole life.
I feel healthier than I did before my two day trip to Edinburgh and Glasgow a few days ago.
In this moment it feels like I have achieved loading. I may have been able to do this with out the Simple Spectrum. Not credible to believe I could have without the B6 and Betine.
So this is my last 24 hours in Scotland and last 48 in the UK for now.
The wild card is that I may just be adrenalized. As I know I am going to be experiencing a few arduous days. I will have a better idea when I am in the USA.
I have decided not to take any supplements in my carry on luggage. I was going to take my lozenges but mailed them all back to the USA.
I do not want to take my sublingual liquid B12 as if it gets confiscated than I would not have any in the USA. I may take more B12 in one form or the other today and when I arrive. I am looking that as preemptive and do not want to wait until I feel I have used up my supplements.
I have traveled a bit and have come to understand that there comes a time when I only have to depend on the system of transportation and then I relax and deal with what ever happens. This trip that is the taxi at 6:40 am. They do not show up and it will not be a good way to start my traveling.
I have said goodbye to everyone except my flat neighbor. There will be grieving to do when I get in the USA.
In the TWW department. Too Weird for Words what really helps me is using hydrogen peroxide in my ears. I think it is most likely just a result of the stress my body goes through when healing rather than anything else. Works.
The trip from Scotland to New Hampshire USA was arduous as it expected. Much less so than 6 months ago when I arrived in Scotland. A positive proof of my supplementation regime.
Been back two full days and what I have experienced is a positive proof of my supplementation regime. I am aware there may be a delayed effect once the excitement wears off. Does not feel like it.
I am well pleased with my 6 months in Scotland which included intense investigation of what is known and thought to be known about B12 deficiency.
Yesterday evening I decided to start a trial of 3 mg of Adenosoylcabalamin SL twice a day. As expected I need a lot of rest and sleep. Some symptoms are noticeable when ever I increase my B12 supplements. A tinge of pain in my jaw and a bit of itching here and there are the only ones. I am aware this could just be by body reacting to too much B12. As I have experienced this before and it goes away so I am going with it is healing.
My current regiment is:
.50 mg SC Hydroxocabalamin three times a day
5 mg SL liquid Methylcobalamin/Adenasolcobalamin 66%/33% three times a day at the same time as injections and extra as needed.
Pyridoxal-5-Phosphate .25 mg liquid in water twice a day.
“Simple Spectrum ” 1 scoop in juice a day in lieu of B-complex. Which includes 20 mg of B6 in the form of Pyridoxal-5-Phosphate and .35mg of B12 in the form of methylcobalamin.
3 mg Adenosoylcabalamin SL twice a day.
So I now am supplementing a total of 14.35 mg of B12 a day. 3 SC and 11.35 SL. I feel much better!
17 days Betine 2 g twice a day, 13 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum for a month +-
I decided to start a trial of 3 mg of Adenasylcobalamin twice a day. As expected there was a intimidate uptick followed by a needing a lot of rest and sleep. Going with that means it is effective and will likely be positive in 2 weeks +-.
I did a short trial of methylcobalamin and adenosylcobalamin about a year ago and that was more positive than methylcobalamin alone.
The travel from Scotland to New Hampshire USA was arduous as it always is. I was not able to get a saline IV the day that I landed. I was the next day. It was not as 'wonderful' as when I have had them before. Guessing as I was B12 deficient when I had them before.
I am well pleased with the results of the 6 months of intense investigation of what is known about B12 while in Scotland. That was the main reason to leave the country.
I am pleased with my current supplement regiment and the results.
18 days Betine 2 g twice a day, 14 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum for a month +-, 3 days 3mg adenosylcobalamin twice a day.
So I did have a nap in the morning. Guessing the result of the adenosylcobalamin being effective. I was busy doing tasks and my toes started to tingle/hurt. I am guessing to to more activity now I am feeling better with my new regiment which I have been doing 30 days now more or less.
I decided to take the 3mg of SL adenosylcobalamin early as I wanted to keep going and finish the project I was working on. Within 15 min the tingling/pain in my toes went away. I thought maybe I should reduce the amount of another B12 supplement I am taking. Then I thought why would I do that. Fear of not conforming was the answer.
It is know that most peoples body can convert hydroxocobalamin to Methylcobalamin and adenosylcobalamin which the body uses at the cellular level. It seems mine cannot do that very well. Perhaps in years and years it would work out.
So I am guessing where I am headed is to inject Methylcobalamin and and take adenosylcobalamin SL unless I can find injectable adenosylcobalamin at a cost I can afford.
19 days Betine 2 g twice a day, 15 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum 1/2 scoop twice a day/ 2.4 g for a month +-, 3 days 3mg adenosylcobalamin SL twice a day.
It has been only one week from traveling from Scotland to NH USA. I am well pleased. I am now thinking in terms of being more healthy and not symptoms for the most part. It is a big adjustment to having as much energy and therefore time to do things.
I am still dealing with glue ear although that is headed in the right direction.
Been dealing with burst pipes and replacing a water heater. It is actually fun and rewarding rather than I am able to accomplish. That is nice.
I am experiencing brain haze, the difference between brain haze and brain fog is rest and sleep causes it to go away where as with brain fog it is more mitigating than going away.
I do fade and it can come on rapidly especially in the evening. My focus right now is getting sleep when needed.
There is a type of intelligence which can be measured and it is called intuitive intelligence. The ability to more often come up with a solution without the necessary information to do so. I, people who know me and people who hire me believe I have an abundance of this type of intelligence.
My intuitive intelligence is telling me that treating with methylcobalamin, adenosylcobalamin, B6 and Betine is the best way to treat transcobalamin issues which is when the B12 in in the blood stream but can not be transported to the cells. It is telling me that treating B12 defency as a Intrinsic Factor issue is somewhat effective but may take years and results in unnecessary suffering.
I improved for 2.5 years with somewhat conventional treatment. The past 30 days have been a major improvement.
The wild card is will I crash at a later date. That I am through experience able to deal with B1 deficiency for a period of time and then crash. Time will tell.
21 days Betine 2 g twice a day, 17 days from increase in hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day. Been taking Simple Spectrum 1/2 scoop twice a day/ 2.4 g for a month +-, 5 days 3mg adenosylcobalamin SL twice a day. Yesterday I was working with a plumber to install a new water heater and so my morning schedule was messed up. About noon I finished my supplementation and by mistake took 3 mg SL of adenosylcobalamin only to find I had already taken one. I went with it and was surprised that I felt better. I am going to continue with that dosage.
I seem to do better and it has held true for 4 months +- when I get up and do a few things and then sleep. It seems the longer I put off my 'second sleep' the harder things are for me. I have no reasonable explanation for why this is the case. It feels like I sleep at night and something happens with my body and then I need more sleep to recover from that sleep. If I have to skip my 'second sleep' or put it off I get all wound up.
65 years of functional B12 Deficiency and suffering.
2.5 years since functional deficiency progressed to a severity that was able to be diagnosed by 60 year old understanding of B12 Deficiency. No idea where the medical staff came up with their concept of treatment as the treatment used 60 years ago was more robust/effective.
90 days of following typical current USA understanding of B12 deficiency and treatment and increased suffering.
1 year three months Pyridoxal-5-Phosphate .25 mg liquid in water twice a day.
2 years 4 months of following 25 year old understanding of B12 Deficiency and treatment.
45 days Simple Spectrum 2.4 g/ 1/2 scoop twice a day.
18 days from increase in Hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day.
22 days Betine 2 g twice a day.
7 days Adenosylcobalamin 3mg SL lozenge three times a day.
3 days of using
2 days 6 mg Adenosylcobalamin SL lozenge times a day.
So yesterday was not a particularly arduous day as measured from the perspective of my recent past. Maybe a bit more. I attribute what I experienced to the increase of Adenosylcobalamin.
I went along quite nicely until 2:30 pm. Could have pushed through and decided to take a nap. Slept about an hour and experienced brain haze. Could have pushed and did not. Made supper, ate and went to sleep about 9:00.
Woke up at about 3:00 am and my Trigeminal Neuralgia was over the top. Pain was severe. I noticed it has a different quality and it was not the severe lightning pain. It hurt.
It was bad enough so I took some Advil. I was fairly confident that it was about the using the Otovent and the increase in Adenosylcobalamin.
I had been using hydrogen peroxide in my ear to deal with the glue ear for 3 years +- I used that and the pain subsided. I have no idea what that is about other than it works. I started it when I thought I had swimmers ear.
So today has not been anything to write home about other than improving self treatment and healing.
It is a lot easier to take when I do not lose weeks to healing after improving self treatment and a whole lot better than months.
The narrative that I did at the begining of this post is the start of my processing the grieving and loss of being B12 Deficient.
1 year three months Pyridoxal-5-Phosphate .25 mg liquid in water twice a day. Note: Was taking Pyridoxal prior and did a trial of not taking that twice with symptom return.
50 days Simple Spectrum 2.4 g/ 1/2 scoop twice a day.
23 days from increase in Hydroxocobalamin injections from .50 mg three times a day to 1 mg three times a day.
27 days Betine 2 g in water twice a day.
7+-days 6 mg Adenosylcobalamin SL lozenge times a day. an increase of 3 mg which I administered prior.
7+- days from changing from 5 mg SL methylcobalamin/adenosylcobalamin 66%/33% three times a day and as needed made necessary by procurement issues to 6 mg SL three times daily
I liken this to when I was 16 and a ski racer and went my own way and did not always plant my pole when taking a gate. I was told by other racers and coaches that was not the way to do it. I replied I go faster that way. I could also reply I go faster than everyone else that way. It was a good lesson in listening to others that do and others that observe but do not accept them as being all knowing. Also a good lesson in that I am not all knowing. Now the not planting the pole is standard.
Over all I am going with supplementing safely in a way to give my body the best chance to heal instead of mitigating the life long cause of not experiencing my life to the fullest possible with correct supplementation.
I went with more B12 is better which it was, which lead to different forms of B12 are better which they are.
It is dismissive to state my work and success is the result of finding what works for me. It was a matter of extensive research, critical thinking and imagination. NOT simply finding what works.
My conclusions can only be disproved by trials which is not going to happen.
13 days of current self treatment. which took two months for me to establish methodically.
Very positive even with a diagnosis and treatment of COVID less than 24 hours ago.
I am working with treating myself for a transcobalamin issue which has been a life long issue which progressed to near death 2.5 years ago. (Genetics are not technically allowed on this forum other than to state I can not have transcobalamin issues.)
The current most robust standard treatment of one mg in every other day is somewhat effective for my transcobalamin issues. Pretty much my body adjusts to having more B12. More B12 is even more effective. The three forms of B12 that I am currently using at once is the most effective.
It has been quite a last 7 days. I spend a day with two people I love and it was wonderful. Went to a two day wedding and spent two days in Vermont. Got a positive COVID test and competent treatment. I also made 17 marbles in a studio I have not worked in before with people I did not know. Making marbles is fun. It is not easy to try and make 17 similar marbles. How I experienced the last 7 days was not possible until I came up with treating myself for transcobalamin issues.
The last 7 days I have not been able to strictly execute my self treatment regiment. Part of the reason is I was so ill from COVID. Mostly it was I was enjoying myself and did not want to bother. There does not seem to be the effect of using up my B12. Most likely as I now administer enough so that does not happen.
I have increased my "Simple Spectrum" to two scoops a day gradually. The recommended dose for my weight is 1 1/4 per day.
It has been quite a three weeks since I traveled back to the states. Replacing water heaters, making 15 marbles, seeing friends again until COVID. Dealing with COVID. Losing and finding my credit card. A wonderful two days at my daughters wedding. Etc. I have not strictly kept up with my regiment. I ran out of SL adenosylcobalamin and methylcobalamin for a couple of days. Eating has been very spotty. I do seem to find a way to talk myself into not taking my two .5mg hydroxocobalamin injections mid day.
I have read here people writing disparaging remarks about not keeping up with their supplementing regiments and that was helpful. I did not go there. I went with this is all very hard and I am doing well with it.
Last night I laid down at night and was not going to do my supplementation all all. I had had enough. I did end up doing my injections. It was interesting as for the first time the injections seemed to interfere with my sleep. I read a book until after midnight and then slept although not well.
I am going to inject .5 mg of hydroxocobalamin every three hours to get to my total of 3 mg per day. Maybe on extra .5 mg right before sleep. No real rational other than to try it to get information. Be a bummer if it makes any difference and I have to decide what to do with that information. Mostly it is about getting my head back on track with how important keeping up with the supplementation is.
8th day of COVID and I am still testing positive. Good to know.
23 days of last regiment trial completed. Positive. Two weeks since COVID treatment. Positive
Three days of increase in "Simple Spectrum" What seems to be going on is I take a full scoop of "Simple Spectrum" instead of 1/2 of a scoop and the effect is healing and I need a whole lot of rest and sleep. So much so it is hard to keep up with my supplementation. In the evening it takes all I got to supplement. Sometimes I fail to complete the task. I end up with the same amount of "Simple Spectrum" as before per day.
It is a case of tenacity and trusting my knowledge. Hard row to hoe is what it is.
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a question about symptoms being really bad then better day to day
A poem to brighten your day...
Self injecting alternate days but suddenly tired again
