Designing new trial: I chose to stop my... - Pernicious Anaemi...

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Designing new trial

WIZARD6787 profile image
10 Replies

I chose to stop my SL methylcobalamin and start injecting methylcobalamin.

I started with 1 mg three times a day. After three days I found that sometimes I could feel that I had used up my B12 between injections and went to 1.5 mg three times a day and found that to be disruptive and decided that was most likely due to my body healing too fast. After 3 days I started injecting 1.25 mg three times a day and that seems to be a good balance.

Once I stabilize on the 1.25 mg then I will work on what changes I want to try.

The all but instant feedback from my body is new and in part from my experience from past trials. It is more about my neurological system healing and giving me better feedback.

It is a factor that I am more confident due to my experience with successful self treatment.

(See profile for other supplementation I use, which has been consistent for 6 months other than eliminating them each for a short time to test if they were still having an effect. )

Not a medic.

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WIZARD6787
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VellBlue profile image
VellBlue

Starting injections at a rate of three a day is a very high dose to start on. If you have just been taking sublinguals previously, then it may be better to try injections once a month to start, and see how things improve and when symptoms start to return. If symptoms start to return at a consistent point before your next injection then can bring the next injection earlier, if symptoms don't return then can space them out. Starting on three per day is so much, very few people need that and you won't be able to effectively judge what you do need.When you take sublinguals only a small part of the dosage gets absorbed and you take it more often to try to maximise absorption, but with injections it is all getting in so you shouldn't match the sublingual and injection dosage.

WIZARD6787 profile image
WIZARD6787 in reply to VellBlue

Hey VellBlue,

Thank you for your input it is appreciated.

I went to SL for about 40 days to establish a baseline having injected for years to facilitate my evaluation.

I have discovered what I need to keep "symptoms" at bay, now I am now working on what I want.

EiCa profile image
EiCa in reply to WIZARD6787

The only concern I might have, and you have likely considered this, is how this affects the balance of the other co-factors and B vitamins. Seems like that would change...

WIZARD6787 profile image
WIZARD6787 in reply to EiCa

I do consider that the changes will affect my cofactors. I also consider that my body is not the same as it was 6 months ago.

I use " Simple Spectrum" in lieu of a B12 complex. This gives me a base of many vitamins and minerals.

Overall, I work with the methodology that I don't have to supplement perfectly rather just close enough so my body can adjust.

It's getting harder and harder to evaluate as symptoms our resolved.

EiCa profile image
EiCa in reply to WIZARD6787

How do you decide the dose of the simple spectrum? Will you be following up with bloodwork, or just going by symptoms?

WIZARD6787 profile image
WIZARD6787 in reply to EiCa

The guidance for "Simple Spectrum" doses is based on weight and I follow that. That is on their website.

For me that is 2.5 scoops a day. I gradually increased over time.

It is important for me to take it with food and split the dose into twice a day.

It is also important for me to deduct the amount of a particular ingredient when calculating other supplements.

EiCa profile image
EiCa in reply to WIZARD6787

In other words you have not increased your co-factors since the large increase in B12? Perhaps this is something I haven’t understood. I thought the more B12 I take the more need I have for higher doses of co-factors. I really like that the dosing on this supplement is based on weight. So few things (supplements, pharmaceuticals) make this adjustment. Sorry to pester you Wizard. I am interested in your ability to think this through and monitor carefully and adapt accordingly. I don’t have that confidence. (I am trying to get it!)

WIZARD6787 profile image
WIZARD6787 in reply to EiCa

I use the B12 societies treatment website for my list of cofactors. The simple spectrum I believe includes all of the cofactors.

I personally have to supplement more B6 in the form of P5P. B6 deficiency exists but is rarely diagnosed and seldom without another deficiency. I do not experience. Peripheral neuropathy if I supplement with P5P.

I am currently determining the effect of supplementing folic acid.

When I get around to it I will order private testing and checking out the limitations of testing.

It is known that B12 supplementation in some cases results in depletions of some cofactors. It may be known that it always depletes some co-factors. I have not come across that information as of yet.

MePo profile image
MePo

Thank you, I have read your information on the supplementation you use, and I have a system that reacts to so many 'pill form' supplements, so am going to give the powder you use a try, it seems to have good reviews from parents of children with Autism etc too, and I would assume they are very sensitive to things. I am in the camp of 'do what works for you', everyone's body has it's own problems/way of working, and at the moment I'm on 2x Hydrox per day, IM, as I had been trialling sub cut into my thigh and it obviously doesn't get into my system as effectively as IM, so I began to spiral down again without noticing, and became very emotionally unwell again. I also have a lot of physical problems to heal, had a lot of surgeries, one big one a year ago, so feel I really need to find my own pace etc for My healing.

Thank you again for the information you give on your journey, we all need our own system but other's journey's can be so helpful when B12 fogs your brain as to where to go next. x

WIZARD6787 profile image
WIZARD6787 in reply to MePo

I found the "Simple Supplement" to be effective. It did interfere with my digestive system at first. Then I followed the advice online about taking it and that worked things out.

The original idea came from no real data on which B12 complex to use and I went with cobalamin issues are neurological issues as is autism.

I expect that those that designed Simple Supplements went through all the toxicity issues and RDA's and that is the methodology for the design. I call it my kitchen sink supplement. 🙂

I also went with as they are dealing with children so they are careful.

I also went with as they are dealing with autism they are better funded than those that deal with cobalamin issues including nutrition for those issues.

Hunt and and peck for nutrition or following the current fashion does not seem the way to go for me.

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