I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some sort of celebration ceremony will be good for my head which I will do on April 01. I will not wait until then to continue designing.
My new understanding is I was also fearful of experiencing something similar to what I did in November 2020 when I was admitted to the hospital 4 weeks from death. This was a crash similar to what I have experienced every winter to varying degrees it was the most severe in my adult life. I survived the others without have a correct diagnosis and bad ones.
In 2020 I was in rough shape being close to death from B12 deficiency is like that. People would come to me in stores as I was hanging on to a shopping trolley to be able to stand and ask if I was alright. I would answer "No" They would ask if I wanted them to call someone and I would reply "There is no one to call." I was correct as I had paid and consulted with a physician too many times to count starting in 1963.
I was not aware I was close to death and the physicians who treated me in the hospital were not either. That was not discovered until I consulted with a hematologist 1.5 hours from my house after requesting it in writing three times. One year after being admitted to the hospital.
By shear luck someone ordered a B12 test while I was in the hospital I was given 8 loading doses and prescribed 1mg of folic acid and 1mg of cyanocobalamin. And told to eat better bla bla bla. The folic acid was prescribed due to successful lawsuits by people who had not been prescribed folic acid and B12 at the same time. (The two blood transfusions and 2 saline solutions were helpful. The fasting for procedures after losing 80 pounds, 5.7 stones not so much.
So that spring was a horror. I have not completely processed that experience. It is hard to process exploitation and abuse when it is ongoing from those I pay to treat me. I missed that was affecting me. I can now process that more deeply now I healed well enough not to crash this winter.
I also came to understand I am fearful of after this winter from my experience that spring. (This is normal after a traumatic experience until it is processed and grieved.)
Although intellectually I am aware that this spring will not be the horror of 2021 and was able to swim 1/2 mile by the end of last year I still need to process that experience. I will use the concept of immersion therapy. Ironic that it will include immersions in water. : )
The difference between self treating and self injecting;
Although I have studied what is thought to be true about B12 and it was important I self injected 1.5 mg of hydroxocobalamin a day. I came to understand that there has been no advancement in the treatment of B12 deficiency since Chandy's work 30 years ago. I have also come to understand there has been no attempt to advance the treatment with regards to form, frequency and amount of B12. It is stalled at EOD hydroxocobalamin. I have reviewed the work looking for the biomarkers of this autoimmune disease and that did not lead me or researchers to any new treatment.
As there was no credible information on the success of injections spaced closer together than EOD, no research in the effectiveness of the different forms or combinations of forms of B12. I through trials, exploration, discovery in 7 more days I will have a working knowledge of the effectiveness of the different 4 forms of B12 available and the possible combinations. I was not guided by those that do not improve treatment. They would not have guided me where I want to go. It is not hard for me to self treat better than those who have not tried such a thing. Doing it at a level I chose is acceptable is difficult. Everything works.
This working knowledge will be superior to those who get paid to treat B12 deficiency. Very low standard and there are indications the knowledge base is reverting to 60 years ago when real scientists worked on B12 deficiency treatment.
My study was what led me to my different trials and is part of my conclusions and how to proceed forward with successful treatment and will continue to do so. I will be designing in the future with the knowledge and ability that I have.
It does not follow that anyone else will experience the same results from the work I have done. It does follow they do not have the knowledge that I have if they have not done the trials and study. Not a better or worse thing just different.
Note: I at one time was comparing the different forms and the different effect they had on specific symptoms. This did not yield any specific results. I did make some deductions and have since come to understand what was happening is I was really tracking effectiveness.
Note: I made a decision to stop all other supplements other than B6 which prevents peripheral neuropathy to obtain more definitive results from my trials. As this lead to consistent improvement measured in weeks and days I stayed with that decision and will revisit other supplementation going forward with my designs. I am a minimalist by nature and choice.
I work with the assumption that I need only to supplement at a level that my body can adjust and assume my body is capable of adjusting to a wide range of nutrient intake.
With more successful/appropriate treatment one of the benefits is that I can establish the effectiveness of a change in B12 in a week. I wait for one more week to make decisions based on the change.
5 days in to a trial of 1 mg hydroxocobalamin, 1 mg of adenosylcobalamin, 1 mg of methylcobalamin 5 times a day including setting an alarm to inject at night. 100 mg of B6 is the form of P-5-P which prevents peripheral neuropathy.
Although not yet a goal it would be sweet to once again tell those that preach to me about health. "Ya need to shut up until you can keep up." I find value in sharing, it is the preachers that annoy me and I do not value what they write or say.
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WIZARD6787
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Yes, Dr Chandy is sadly forgotten about yet possibly had the greatest impact in the UK for B12 deficiency. I think it remains a mystery illness because of it's impact on so many systems, but surely that in itself makes sense when we consider how anemia impacts the blood and nerves.
One of the problems seems to be that B12 anemia doesn't seem to show on blood tests - at least not in the earliest stages. And sometimes even in the later stages, when B12 levels are extremely low. So it seems to be there's a significant issue with testing that is not being addressed nor is anything to do with B12 being taught.
Because the treatment is simple and easy to administer, it is taken lightly by medics. They think this doesn't consitute a 'serious illness' because 'you can reverse it'.
It really is a peculiar condition and we need vastly better testing.
My background was rooted in a system breakdown in 2019 after chronic work stress and my first house purchase. I had probably been coasting on low levels from a poor diet and alcohol, lack of sleep and no proper rest.
I had severe gastrointestinal problems followed by a colonoscopy, then a thyroid nodule, a salivary gland tumor, and surgery in 2020 to remove these (thankfully) benign tumors. While I'd had some symptoms of pins and needles and lethargy/fatigue, I mentioned this to the surgeon prior to surgery who was flummoxed and said 'oh. i can't help you there, sorry'.
I left it until the surgery and (wrongly) assumed any problems would come through with the gallons of blood they took before my operations and after.
Nothing.
They asked me about diet and I said I took Wellman multivitamins and they said 'ok great'.
That was the extent of their due diligence with ANY B vitamin status of a patient having considerable surgery to remove half a thyroid and a neck tumor.
Within a few weeks I felt weaker and the deficiency gradually took hold, accelerated by alcohol. I believe I had leaky gut.
But of course, when i finally got to the GP it was in the third lockdown and all I could do was a econsult with 'pins and needles/neuropathy symptoms' and was greeted with the phrase.
'We're seeing alot of somatic problems at the moment'
The subtext of which I took as 'your symptoms sound like BS Mr. Patient so please don't be wasting my time, I'm knackered'.
So that was already a massive mountain to climb.
It took 25 minutes for him to get that it could B12 and alot of work on my part. Even when I said it could be linked to my gut problems he fervently disagreed.
Until Western Doctors study holistic medicine (gut, nutrition, exercise, sleep) we are doomed, it really is that simple in my mind.
God rest Dr Chandy's soul and everything he did but it did not change the faulty system.
If only Doctors weren't so arrogant and we didn't put them on pedestals--and Big Pharma weren't so forceful--we might make some major breakthroughs in health.
Until then we can self medicate, thank goodness, with every other day Hydroxocobalamin.
5 injections a day may be a waste and I would keep to the every other day regime which will work with enough time and co-factors.
Well put Pickle500 . Thank you for that insight . I especially liked your remark that doctors should study holistic medicine . and “ If only Doctors weren’t so arrogant and we didn’t put them on pedestals— and Big Pharma weren’t so forceful ( I would have added powerful as well ) we might make some major breakthroughs in health”
I’m totally convinced that if Pernicious Anaemia could be treated with a wonderful drug from Big Pharma , we would have no problem at all in getting adequate treatment . ……….But the solution is only a vitamin ……..
🙂 thank you Wedgewood, very kind of you. And yes I agree, add in powerful to Big Pharma too.
I agree, surely there would be a drug they can manufacture that everyone could take to resolve B12 effectively. Having to rely on injections is so archaic by today's standards and it just seems peculiar not to have better treatment.
But I think getting a B12 deficiency is a profound experience because one realises that everything they assumed to be true about medicine is really untrue. And the "heart" of the issue is the gut, which frankly remains a mystery to the medical world even thousands of years since we first were told that all disease starts there.
It's like we all know what the problem is but no-one can do anything really about it...but hopefully soon they will have to, if supplies of injectables are running out and the world is going plant-based.
‘A profound experience’ is spot on. I had dwindling faith in mainstream medicine before & even less now. Maybe the answer is to set up lifestyle and well being centres and leave the mainstream to their test results and pharmaceutical solution system.
>>5 injections a day may be a waste and I would keep to the every other day regime which will work with enough time and co-factors.
I followed this advice given by others from January 2021 to January 2023.
I suffered needlessly.
If you read and comprehend what I write ,I never give advice I share. Part of the reason I choose to do so is the suffering caused by me following others that gave advice on this forum. With the same confidence and ignorance as you have given advice in your reply.
Well, I suppose none of us can be accountable for what we say as no-one is medical. Unless they are but I don't think many are.
Injecting 5 times a day could also be very dangerous for the muscles and injection spots, and novices may get carried away assuming multiple injections are fine.
I do appreciate that high B12 is needed for recovery but I also worry about multiple injections because people can damage their muscles or bodies in further ways without proper guidance.
So I'm just putting that out there that I myself suffered muscle damage from improper injection routines and that is also a dangerous advertisement. Time is needed for healing and I was impatient with that, and caused further problems for myself.
>>Well, I suppose none of us can be accountable for what we say as no-one is medical.
I take responsibility for what I write. No excuses. Personal integrity is important to me.
I inject SC not in the muscles and 3 injections 5 times a day. I do not need instruction how to do this correctly. It is not challenge for me and it is unlikely I would screw it up.
Sorry you damaged your muscles. Sorry you needed guidance and did not get it. I do not.
Time is needed for healing that is simplistic. It is a platitude. Healing without the appropriate amount and frequency will not result in healing no matter how long you wait and hope those giving advice happen to be correct.
Well then what is the purpose of your post? Seems more for personal gratification than to help anyone else here?
I think it's admirable you found a way to self treat that works but I also think it's important to highlight that 5 injections, even if SC, is alot and can adversely impact others.
I do not write to instruct others. That would be self-gratification.
I share, and some find my writing helpful as they make their own choices.
>> 5 injections, even if SC, is alot and can adversely impact others.
My SC injections do not impact anyone but me. I trust people to make their own choices and do not see the need for me or you instruct them.
If I were to say they were safe or harmful as a fact is not something I would do. I would share my experience. Which is what I did. If I found my SC injections to be something I could not handle I would share that.
Note: 3 injections 5 times a day equals 15 injections.
That is the situation at this time so no change needed. I will post what I experienced when doing this last trial. Some people find value in that information.
I apologise to you for my reply that--on reflection--lacked any empathy for your struggles.
You have been through alot and I wonder if I may be a younger person than you - I'm in my mid-life. That may mean I have more resources to recover.
For yourself, you are worried about 'crashing' and so I can understand why you'd want to load up on so much B12.
As you say, you know what you're doing to inject safely. And you probably have a regime you stick to, to remain safe and orderly in the administration of the doses.
We are all different of course we are.
If only we had a proper healthcare system that could measure blood levels accurately and understand cellular activity.
We've a long way to go.
I wish you well and hope you stay safe with so many injections.
Don't concern your self with not empathising. That is not going to ever happen due to lack of context or understanding.
You may have more resources than me due your age or you may have less when all factors are in play age only being one. Or I may have more resources with regards to physical condition than you.
>>For yourself, you are worried about 'crashing' and so I can understand why you'd want to load up on so much B12.
Not a consideration and that would be acting out of fear. Don't put that on me as I do not do it. The choice to discover and explore how to heal was made first at age 10 and concerning B12 3 + years ago. I do not nor have ever loaded up on B12. I use rational thought to make my decisions.
Not a challenge for me with my abilities to stay safe with injections. I did years ago review diabetics experience with injections and they can handle it easily also.
I only intervene when someone gives advice or false information in response to a post I have made. It was uncomfortable for me. It would have been uncomfortable for me not to respond and leave it to chance that someone would not know your advice could be harmful. I would feel I was part of that possible harm.
Pretty much if you tell me about you and don't include me in your evaluation you will always be correct. Telling me about me is unlikely to have any meaning. That is true for everyone not you.
I am sorry to intervene, but my experience is that the body gets used to a certain amount of supplementation and more is not necessarily better. In fact, I had better recovery on once-a-week injections compared to EOD. Currently, I do 50mcg/day cyanocobalamin injection. Studies suggest (Kuzminski 2002), that 2000mcg/day oral cyanocobalamin (which should be roughly equivalent to or slightly less than what I take) give max effect after 2-4 months (MMA is as low as it can get, which indicates very high active B12), and this is better than at least the last week of monthly shots (MMA takes about 1 week to change). Perhaps one can do an MMA or homocysteine test to confirm, but I have other symptoms in my body that indicate that currently I am properly B12 supplemented, although my nerves need some more time to heal fully (getting better gradually).
Thanks for intervening. I was finding it uncomfortable to read the interaction above. We are all at our wits end how to get to a balance where life is still enjoyable where the importance of this is as a result of mere vitamins and minerals. When we are in balance we can fight the nasties , viruses and bacteria, our bodies are having to deal with on a daily basis. I experienced this at the beginning of the ‘Covid’ period. It was the end of January 2020, I was balanced and was travelling a lot, I had managed to get through the flu winter month. I then got infected at the airport standing in long queues to have our passports checked and everyone around me was coughing their guts up, it already then felt wrong just being there. I got the infection, it wasn’t called COVID then, temperature 🤒 and all the typical flue symptoms and one extra , under the skin bleeds on my arms and legs. (Something I still get this from time to time, having had COVID 3 times even though I had all the vaccinations and the boosters. ) I then also got a pneumonia on top and was given antibiotics. My husband got me back on my legs and was determined we fly to the canaries for winter sun to speed up my recovery. I decided to inject Hydroxocobalamin very often and my husband started them as well , as a preventative measure. We got to our home from home there and just as well as husband also fell ill. We had done a healthy food shop so we weren’t to go hungry. We just went from bed to sun lounger during the day for days. Letting the vitamin D do its wonders. I managed every day to wash the amount of wet bed sheets from sweating so much. We had done the right thing coming and soon we were feeling better. We kept being out in the winter sun and taking walks . Then we watched the news on the TV and realised the seriousness of this infection, how lucky we were. We cut our return back from 4 weeks to 3 and just as well , soon after we managed to fly back the flights stopped , the borders closed. Both my husband and I realised the importance of the right levels of vitamins and minerals, even more then before. Since then I experienced twice that I used up all my store of vitamin D , was diagnosed chronically depleted and was put on very high dose of that vitamin. When I now ask to have my vitamin D checked I am told that U.K. NHS don’t test for it anymore just take the pills. So I am managing myself and my husband privately. Moved to Netherlands where it is much easier to do so. At 72 I am more vulnerable to catch everything under the sun , I made it my daily task to keep the two of us fit and healthy. And like Pickle and Wiz find the best way for me to use. Let’s respect each other, a healthy positive open discussions can only be helpful, scaremongering is not. We are all just finding our own way in this.
Thanks ACritical. I think the importance of having the right vitamins and minerals is underestimated. I have had mild B12 deficiency symptoms for about 20 years now (realising in hindsight), but they really flared up 5 years ago, most probably due to a weak thyroid, which in itself could have been caused by a Vit D deficiency !!!
It is all connected and I think, as a preventive measure, everyone should take a maintenance dose of Vit D, B12 and some other basic vitamins. Also get checked regularly and if even mildly deficient in anything, supplement. Normal is not necessarily optimal and sometimes the symptoms are hazy. It is also clear that people with good vitamin levels would be able to fight infections much better. I have a body fungal infection that only comes up when I am B12 deficient!!! Unfortunately, the doctors don't realise these things and just go by ranges
>>the body gets used to a certain amount of supplementation and more is not necessarily better.
This concept is not established nor generally accepted as valid. That supplementation can exceed the body's capacity to utilize the supplement and exceeding that amount would be unnecessary and potentially harmful is accepted What that amount is has not been established empirically although some guesses are made.
I work with the concept the unreachable goal is to not supplement less than beneficial and not to supplement more than that.
In the absence of credible medicial knowledge as to what the ideal amount is for me I use trials and observe the effect over time. I am not limited to the most robust amount allowed by current regulation to be prescribed of EOD 1mg of hydroxocobalamin. the regulation uses information but is not successfully empirically based as evidenced by the many people who benefit from exceeding this regulation.
I can not write about the study (Kuzminski 2002) as I could not easily locate it. A study which empirically establishes the effect on some people with regards to neurological symptom s would be ground breaking. Blood tests not so much.
>>I have other symptoms in my body that indicate that currently I am properly B12 supplemented, although my nerves need some more time to heal fully (getting better gradually).
Good on you! I experienced elimination of the symptoms commonly associated with B12 deficiency by supplementing three injections of hydroxocobalamin of 1mg daily and 3 mg Adenosylcobalamin sublingual three times a day. That took 6 months. I suffered needlessly when under supplementing with 1.5 mg of cyanocobalamin every day.
I am now healing my neurological symptoms not typically associated with B12 deficiency. I do experience symptoms typically associated with B12 deficiency when I improve my supplementation with regards to frequency, amounts and form. I experience the symptoms for a short time and they are therefore not indicative of B12 deficiency as determined by current understanding.
Thanks for the reply. I agree that the current understanding of how much B12 to use is awfully lacking. EOD injection is just a very random spec and frankly did not suit me well. Every day smaller amount works much better, in my experience.
Sorry, it is kuzminski 1998 not 2002. It is very difficult or possibly impossible to do a trial of neurological symptom correction. What this paper does is to test MMA, homocysteine and serum B12. Perhaps active B12 could also have been tested. MMA is probably a proxy for active B12 and is what I would go by, the only non-B12 reason for it to be artificially high is kidney issues. The paper shows that daily 2000mcg oral cyanocobalamin (which would translate to 15-30mcg day absorbed B12) gives a low an MMA as can possibly be achieved AFTER 2-4 months. I may be wrong, but I take it that when active B12 is high, then the neurological symptoms will also resolve to the maximum extent possible, although any neurological damage takes time to heal. This seems logical to me but then who knows!
>>It is very difficult or possibly impossible to do a trial of neurological symptom correction.
Certainly outside the medicial professions ability. Fortunately not for me personally. I no longer even think about what the medical profession could or should do with regards to anything. I work with what I can expect.
The extent to what degree healing is possible to experience with regards to the neurological system is directly related to treatment and I do not limit that to the EOD regulation.
I work with a person in the real world and they do better of sublingual than injections. We both work with exploration and discovery as our most valuable abilities.
I do not limit my work to peripheral neurotrophy and consider the subjective understanding of the neurological system and my focus on how I experience not if I can be more productive etc.
I am so sad that you had to decline so far before they figured out what is wrong. It's awesome that you have managed to recover so much! Keep on taking control of your own health. It would probably feel good if at some point you recover enough to be able to sleep through the night. Very best wishes for continued success! It would be nice to be able to find a physician who accepts that you need a lot of B12 so that if you had a health complication, you could continue to get enough of it.
No advantage for me to sleep through the night. I gave up accepted sleep hygiene when I was 26. In layman's terms I'm a biphasic sleeper.
Really? A physician that understands to heal I need the amount of injections I do. One that understands three forms at once is best? Worse yet one that can that can fathom that need may change as I heal. Those that love me are competent to procure whatever is best. I also have the advantage of being able to go to different countries if that's what it takes.
I expect there are physicians that can successfully treat B12 but do not let it be known due to the risk of them doing so.
For the record - 15 injections today is a lot and would require a careful plan for rotation of injection sites to prevent scaring/overgrowth/thickening of the epidermis.
Thanks for that! I did happen to be aware of that but I might not have been. I use the general principle of it is best to keep the time between any injection sight as long as reasonable possible. Not only to lessen the chance of scarring but I understand that bacterial contamination does occur with each injection and there is a cumulative contamination effect.
I do not use the I have never had any problem as a rational for anything. I use I have got away with it so far.
I use a line of 5 injections in three sets on each side of my stomach and 3 sets on each leg. This gives me 72 hours before reuse of an injection site.
The reason for three injections is to inject three different forms of B12. I kept the amount the same as my last 14 day trial of two forms 5 times a day. This is an increase of 5 injections. (I have experienced two forms at one as more effective.)
The way I keep track of where the last injection is with a waterproof marker. never injecting into the mark.
My head being north I always progress south to north and and always progress with the horizontal lines east to west.
Being honest I was hoping this trial would not be effective and I could go back to two injections 5 times a day. I am two 8 days in and that does not seem to be the case.
I have established with a chemist that does compounding that Methylcobalamin and Hydroxocobalamin can be compounded. This I could accomplish from drawing up from a multi-use vial and exchanging Luer Lock needles. Considering the piercing into the vial to be a smaller source of contamination than my skin that would both reduce my contamination rate and number of injection sites.
This change would result in a larger amount of liquid per one of the injections to two ml which I have not yet experienced.
I am working on designing a next possible trial and deciding if will be a reduction, an increase in either form or amount or just maintain for the summer. My body works much differently with more light and sun energy and this will make any evaluation of regiment change difficult or impossible.
It seems that it is not a lot of injections rather what I injected prior was not very many : )
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