Is it Supplementation or just life?

[WIZARD6787]

This dilemma was better expressed by someone else on this forum. As often happens something resonates and I mull it over and can not give credit where credit is due.

When under supplementing by injecting 1.5 mg Hydroxocobalamin once a day and taking 6 mg sublingual adenosylcobalamin I could only tell I was improving monthly from supplementation.

When under undersuplimeting by injecting 1 mg Hydroxocobalamin three times a day and 6 mg sublingual three times day I could tell I was improving from supplementation biweekly. Once I made the discovery that the same amount administered more frequently was more effective I could tell weekly that my supplementation changes were effective.

As I gradually increased to my current supplementation: Current Trial (5 Days); 1.5mg methylcobalamin 3mg/ml, 1.5mg adenosylcobalamin 3mg/ml, 1mg hydroxocobalamin 1mg/ml. SC injection 6 times a day including setting an alarm to inject at night. 50 mg B6 in the form of P-5-P or pain from peripheral neuropathy returns. I can now differentiate between improvement from more effective supplementation and life.

I can also differentiate from life and the strain on my body from more effective supplementation in a few days although I typically wait 7 days to be more confident in my information.

I accepted that the roller coaster I experienced was necessary and when it was the effect of under supplementation. Bad information. That B12 deficiency necessarily results in low energy is also bad information.

I am not yet comfortable with predicting the effect what changes I make in my life will have. I am dealing with the fear of once again being on the roller coaster of under supplementing. I am working on that and processing the fear. It is hard work. Pretty much the goal is to be tired when stressing my body and not experiencing the effect of under supplementation.

I still sometimes experience fading at the end of the day. Fading comes over me suddenly and unexpectedly. That used to happen at 11 am and now is around 7 pm sometimes.

I am currently working on getting sun energy after being deprived and that is going as expected. I will be adding cold water immersions and then swimming and am hopeful I will be able to discern the effect of those changes. We will see.

My next trial is with Thiamine in the form of Benfotiamine and that is an unknown. My experience with B6 was immediate improvement and emotionally I am hoping for the same with Benfotiamine.

Although I met my goal of not crashing this winter I did have a downturn and that is on my mind. Intellectually I know it is likely I will not experience a downturn next winter or at least not as severe. I know intellectually that it is best I experience the few days of downturn when improving supplementation. It is hard emotionally not to go with what I experience now and hope improvement will happen with time.

Once I have the results of supplementing Benfotiamine and perhaps once again injecting B6 my next trials will be to increase concentrations which I just discovered is much more effective even at the same amounts. Then I will try eliminating hydroxocobalamin.

As I write I came to understand I could write out how I intend to proceed, expected results and time frames. Knowing what you are doing lends itself to that. It would be more of a treatment plan than a list of trials. I do not want to as that would be to clear what I am facing. I choose to stay willfully ignorant and hope for better results than I am likely to attain. Least I never went with the delusional route. : )

I read on this forum that it was expected that healing could only be obtained to a point about 3 years prior to starting supplementation. That is incorrect. It may be correct for under supplementation. I starting having pain in my floating ribs in 1963 and that continued intermittently until a few months ago.

Life long B12 deficiency seems to require different treatment and it matters little to me that some improvement can be experienced at 1 mg EOD or that it 'works' for some people. It seems that effective treatment can lead to personal growth that was not possible physically my whole life.

[bookish]

Thank you so much for sharing your processes and particularly for the mention of the rib issue. I have had similar for as many years as I can remember - assumed in my head that it was some sort of chronic costchondritis (although also diagnosed with fibro) - the ribs do get worse with my usual mast cell triggers and tryptase which is released is cartilage degrading, so that made some sense (I also get pain in other cartilage under these circumstances) . But I know now that low B12 can cause chronic inflammation via IL6 and that I am predisposed to higher IL6 effects through polymorphisms. It will be interesting to see whether I too can reduce the level of rib pain. All the best to you.

[WIZARD6787 in reply to bookish]

You are welcome. It is self serving in that I write for me. It helps me to keep things straight in my head.

I was diagnosed with fibro among other things. I was also diagnosed with costochondritis. It is not really a misdiagnoses as it meets the requirements of the medical taxonomy. It just was wrong.

I suspect that my rib thing was actually my diaphragm not functioning correctly. Caused by polyneuropathy from B12, B1 and B6 deficiency.

I once had a hematoma from my rib thing. I was in pain and ended up in an ambulance. A specialist came in and made the determination it was a hematoma as I refused to let them operate to see what was going on as they were not being rational. I then was given demerol for the pain and it was gone. Pretty much the muscles that move my diarapham were spazaming and caused the blood clot.

It is in my past and there is no pain as in my issues with temperature regulation.

[bookish in reply to WIZARD6787]

Very interesting. I keep a journal to help get things straight in my head, but posting helps as well, and also prompts my memory. Has your temperature regulation improved at all - and did you struggle with both heat and cold, sorry I can't remember. Cheers

[WIZARD6787 in reply to bookish]

I make notes and then compose a post. I also journal but that is about life.

For me it is about regulation. It is my body not adapting to any change in ambivalent temperature. So it could be seen as having issues when the ambivalent temperature is either 'hot' of 'cold' that is not the fundamental issue.

It has resolved although I still will sometimes want to swim or shower to make it easier for my body to change my body temperature.

I still sometimes experience my stuffy head and expect it is related to the same deficiency that resulted in the temperature regulation issue. The stuffy head is improving but I suspect I am still deficient in some mineral or vitamin. I have not yet designed a way to try and find out how to eliminate my stuffy head.

[bookish in reply to WIZARD6787]

Thank you. I can't regulate and am intolerant of both cold and heat (not that we get much of the latter), which started post hemi-thyroidectomy. I have been told that the regulation/autonomic issue is part of my small fibre neuropathy, but I suspect that it is all fundamentally B12 and folate in my case. I started to sweat again after some time self-treating, so am making progress. My stuffy head was mainly a dairy thing but possibly also magnesium. Look forward to hearing that you have resolved that too.

[WIZARD6787 in reply to bookish]

I have not had any real success with trying to target a specific symptom over time. A particular symptom might improve for a period of time. I work with healing my neurological system and symptoms will resolve.

The challenge is healing my neurological system with no credible information about how to do so and lots of information about how to heal from what others experience and I do not. When frustrated I call that B12 Lite.

[bookish in reply to WIZARD6787]

I agree. I have just tried to generally improve my health and some symptoms resolved quite unexpectedly to me (even after many years). On investigation I found that some others got the same response, but of course many didn't. This particularly seems to be the case with restless legs, which has a surprising array of causes and contributory factors, with sufferers generally welded to the one cause that seems to be their main factor being the cause for everyone else - which it may not be. Magnesium supplementation was a big benefit to me for overall health, but doesn't mean it will be for everyone or may be more subtle so less obvious. I am glad to be here, and learning, and making improvements. Best wishes

[WIZARD6787]

Thanks for sharing on the positive outcome of magnesium.

>>sufferers generally welded to the one cause that seems to be their main factor being the cause for everyone else.

I have learned that those that give advice rather than sharing should be ignored. Same with those that are really just trying to get medical personal to follow what is 'supposed' to be done. Not saying anyone should not express or even that they should not claim some expertise. Just I choose to ignore their beliefs and try to simply share.