With the sublingual of total 15-20 mg a day 3-4 doses my brain fog changed to 'brain haze' I could force myself to do things as I had much experience with accomplishing that, I chose not to push when I could which was extremely difficult and it took some practice to accomplish it without angst. A leap of faith with no idea where I might land.
I had a friend send me two vials of 30ml hydroxocobalamin 1ml/mg and insulin syringes from USA after importing them to my house. (It is not prosecuted but it is illegal to import B12 into the USA.) The insulin syringes are .5 ml so I am limited to that amount per injection. For now I have chosen not to order syringes with more volume.
I started injecting along with sublingual and symptoms got worse especially the lighting shooting pain in random places in my body. I was extremely tired and needed much sleep. Thing is I woke up not as tired, which is lovely! Then the symptoms leveled out as I slept and rested and I experienced improvement over time.
I am now injecting PRN (pro re nata) which means as needed. Or in engineering ESO (every so often) 😀
Last night I woke up at 3:00 am which was 9.5 hours after my last injection and injected .5 mg and then slept for 4.5 hours. It was wonderful.
I am aware that current understanding is that more small doses will have no positive effect. This is in conflict with the current understanding that your body will not use excess B12 or I am not experiencing what I am experiencing. Seems that some cells in my body did not get the memo. 😀
I trust my self awareness and inject when it feels I need more B12. Not going to get a professional to recommend that! I call when I feel the need for more B12 when I am fading.
The length of time between injections/fading varies based on what I am doing usually 5 to 7 hours excepting when I sleep.
I feel better than I have in over 4 years.
I like my chances which I have not since I had a relapse last February and March. It is not determinable if the relapse was stress and excitement from moving to Scotland or my treating my B6 decency with Pyridoxal instead of Pryidoxal 5 Phosphate. I guess most likely I had not achieved loading of B12 as I thought I had. If I had, there should not have been a relapse the way I experienced it
It is noted that the results of my current regiment may be effected by the fact that my body has changed in the last 2 + years from having administered B12. No way of knowing the effect of this regime if I had started when first diagnosed. I guess it would have been too intense and caused symptoms to escalate.
I penned this post as an expression of my experiences and did not intend to portend any expertise. I welcome any critique which has been helpful to me in the past.
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WIZARD6787
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WIZARD6787, love your post. I like it because it is your experiment and you uncovered something that worked and want to share it. I am always open to ideas.
What was your original b12 level before injecting?
When were you first diagnosed or aware of the deficiency?
Was your deficiency due to diet (lack of consuming meat)?
To be clear I exhausted other regiments before experimenting. My experience with them gave me a baseline to compare.
There is strong indication that my B12 deficiecy which left misdiagnosed led to PA is heredity. I first told a doctor something was wrong at age 8. At age 20 I has a reaction to Nitrous Oxide. Again after large amounts of Nitrous Oxide age 40 I lost control of my body and crashed a car through a guardrail and into a river fully conscious.
I was diagnosed in a hospital Nov 2020 after losing 100 pounds and my B12 level was below detectable limits. Given two transfusions, fasted for most of 5 days while tests were done and released in agony.
This is a story of overcoming adversity not a sob story. Although I do cry often.
Pretty much my personal opinion is that more B12 is better and less leads to prolonged suffering. Not a medic. B12 is not harmful if co factors are managed. After starting a new regiment of increase B12 symptoms get worse and that is hard to deal with emotionally and takes a leap of faith. It is terrifying to have symptoms get worse and have it feel like you are doing something that is going to lead to how you felt before.
Hello, thank you for sharing your experience, really glad your injections are helping you. I have heard of 500mg injections being used instead of 1,000 successfully in other chronic inflammatory conditions when the person is not B12 deficient , so I’m not surprised that it can help some PA sufferers too.
I was wondering what sublingual product you used that helped you?
Thank you for your reply. I started using lozenges after hydroxocobalamin IM for a year. I used hydroxocobalamin and adenosylcobalamin total 8 mg 4 mg in the morning and 4 mg in the evening. Improvement was gradual. It was from the USA and distributed by Seeking Health. I am currently using methylcobalamin and adenosylcobalamin liquid sublingual from the USA made by the same company.
Pretty much more B12 is much better for my body. I am very careful with making sure I do not deplete the co-factors.
This information was posted by someone else on the forum. I do not remember who so I not give credit where credit is due.
Toxicol In Vitro . 2017 Oct;44:206-212.
doi: 10.1016/j.tiv.2017.07.009. Epub 2017 Jul 14.
The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function
Misha F Vrolijk 1 , Antoon Opperhuizen 2 , Eugène H J M Jansen 3 , Geja J Hageman 4 , Aalt Bast 4 , Guido R M M Haenen 4
• PMID: 28716455
• DOI: 10.1016/j.tiv.2017.07.009
Abstract
Vitamin B6 is a water-soluble vitamin that functions as a coenzyme in many reactions involved in amino acid, carbohydrates and lipid metabolism. Since 2014, >50 cases of sensory neuronal pain due to vitamin B6 supplementation were reported. Up to now, the mechanism of this toxicity is enigmatic and the contribution of the various B6 vitamers to this toxicity is largely unknown. In the present study, the neurotoxicity of the different forms of vitamin B6 is tested on SHSY5Y and CaCo-2 cells. Cells were exposed to pyridoxine, pyridoxamine, pyridoxal, pyridoxal-5-phosphate or pyridoxamine-5-phosphate for 24h, after which cell viability was measured using the MTT assay. The expression of Bax and caspase-8 was tested after the 24h exposure. The effect of the vitamers on two pyridoxal-5-phosphate dependent enzymes was also tested. Pyridoxine induced cell death in a concentration-dependent way in SHSY5Y cells. The other vitamers did not affect cell viability. Pyridoxine significantly increased the expression of Bax and caspase-8. Moreover, both pyridoxal-5-phosphate dependent enzymes were inhibited by pyridoxine. In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5'-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency.
OK 6th day of new regiment and I am well pleased so far! It is working out that I inject .5mg hydroxocobalamin three times a day SC and have dropped the SL. It is pretty much listening to my body and self.
It seems to me that B12 is prescribed and researched as a medication would be as that is the methodology available. I think in terms of a supplement when I choose how much and how often to inject.
I find it interesting that the minimum amount and maximum for B12 injections are one and the same by competent medics. I do not even consume the same amount of calories or water on days I swim and If I swim more than 1/2 a mile I need more calories and water.
It does not seem to me my body has the capacity to store B12. I see no reason to believe that to be true for me. I also now question everything about what is thought to be true about B12. Example: How was it determined that the liver can store B12 for 3 to 5 years. Are they measuring just the mount of B12 in the liver and doing the math? What if the B12 in the liver does not become available at the cellular level? That sort of thing.
Going to sleep and being reasonably sure I will wake up more rested is heady stuff even though that has been going on for only a week. I am aware that things have been going smoothly and know that will not last long. Life is like that.
I had deconstructed B12 amounts and frequency. I had come to the conclusion that more was better for many reasons and no reason that less was advantageous.
I looked at my trials over time and noticed when I took B12 three times a day which sometimes included sublingual that I had less severe symptoms.
I decided to do a trial of more frequent injections as if this was better it would not be known as it has not been investigated and the understanding of how the body uses B12 when injected is measured by the same methodology as medication.
B12 being a supplement and not a medication lead me to the scientific fact that a persons weight was simply calories in calories out, which has been disproved. Thinking of B12 as a nutritional supplement lead me to try a trial of .50 mg of hydroxocobalamin three times a day. This was a definitive improvement in two days and a huge relief.
I did a trial of ,50 mg 4 times a day and that made me feel lethargic but not fatigued. I allowed that feeling lethargic may have been from my body healing.
I am now doing a trial of injecting when I wake up either .25 mg or .50 mg depending on how I feel. I then inject again in 4 to 6 hours and determine the amount by how I feel and what I expect to be doing.
As an example yesterday I woke up and injected .25 mg and went out for breakfast. I then decided to go to Dunoon Scotland with a friend. Mostly so I could ride a ferry on the River Clyde. I decided to inject .50 mg for the trip even though I had injected .25 mg 2 hours before. I got back to my flat 7 hours later and injected .50 mg. This morning I injected .50 mg. I had a wonderful time and more wonderful that would have been physically possible a month ago. I also do not have three days of recovery.
I also looked at the difference in perspective between prescribing and self treatment. The conclusions of what is effective are going to differ as well as what is acceptable. Pretty much I use applied science more effectively than the best prescriber could possibility prescribe and achieve much more desirable results by my evaluation which is all that counts as I am self treating.
The current protocol of 1mg every other day and wait years is 25 +- years old and was state of the art for then, It is heavily influenced by the prejudice, willful ignorance and willful arrogance of the medical field. I am self treating now with the information available to me.
I soaked my feet two nights ago to evaluate the numbness in my toes and again last night. The numbness improved in one day even though I had walked 6 miles.
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