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Counter Intuitive Self Treatment.

WIZARD6787 profile image
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Wwwdot wrote something to the effect that the process of self treating is counter intuitive and someone else wrote that they needed higher amounts than thought to be need to heal. Reading this led me to pondering.

If you had told me 4 years ago that I would have to design a way to self-treat that goes against what the medical field was confident was unnecessary I would have questioned your mental balance.

It is not unlike when as a consultant I would be on a site and the person would say I designed it myself and I would think I knew some idiot did when drove in the driveway. This once was a licencee architect. We ended up doing a lot of work together once he understood he did not know how to design a lot. I do not know how to design buildings.

It is counter intuitive for me to administer supplements in amounts much greater than advised. including by the cut and paste non-experts with no experience of severe B12D that very frequently cut and paste advice and instruction.

B12, Methyl Folate, P-5-P, Vitiman D3, K2, Betaine, Magnesium are supplements that my body needs to heal in amounts greater than what is thought to be true. That took years to establish by trials.

It came to me that I did trials of Methyl Folate, D3, K2 and Betaine and the trials indicated they had no effect. The reason was that I administered the recommended amount.

I have an advantage as a scientist as I know in my field of environmental science we use science and then use applied science that is constantly being improved. I was able to review the justification for the recommended amounts and see the flaws and why they existed. Much of about feeling safe with better/mediocre results and not having the courage to excel.

I do not think I would have dared to self treat this way without those that shared there success with doses higher than recommended. It did take me a while to understand some on this forum who instruct and advise do so from the perspective of what might be seen as B12D Lite or are following the recommendations and may not be healing at a level that is possible by not following. That is their choice and I only object to the advice and instruction as it is wrong other than for B12D Lite.

I do not see forcing GP's to follow the guidelines as a solution only a less mediocre method. It would be nice if they would at least do what they are getting paid to do. We have the same issue in my field.

If you had told me 4 years ago that I would be able to self treat with a level of success not even known to the late great Dr. Chandy I would have thought you a fool. His work was ground breaking 30+ years ago.

When I improve my supplementation I need a lot of rest and sleep. Sometimes 14 hours + (this is hard as I need to set an alarm to wake up an supplement. That only lasts a few days now with improved self-treatment.)

The needing more sleep and rest is not counter intuitive. It is hard to go through as it is disruptive. I have to have food ready to eat before I start a new trial. It is very hard for me as feeling worse hoping that I will feel better is hard. There is the aspect than I fear causing fatigue. That is less of a fear with my success. I also do not wake up fatigued now rather just tired from healing. I did not and could not understand the difference between fatigue and being tired until the fatigue was mitigated to a large degree.

I do not hold the false belief that I know what you experienced or what you will experience with any amount or type of supplementation. I do know that those that claimed to know how I should self treat were WRONG.

Note: We all decide what we mean by 'works'.

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WIZARD6787
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5 Replies
Rexz profile image
Rexz

Wizard, I'm not on here much anymore but this is by far the best post, my opinion, you've written. Yes, listen to your body, listen to your cells yelling at you when you are unknowingly depriving them of some nutrient. All of us are different. Often forgotten is this disease is progressive, which adds a complication for treatment. In other words, just because a person is diagnosed with AIG/PA clearly does not indicate what stage you are at. Thus, the treatment will change over time further complicated by the fact that we are all different even if we were at the same stage. Personally, I'm at the end stage. I no longer have oxyntic mucosa or Parietal Cells. Long since destroyed. I've no stomach acid and, in fact, since my parietal cells are gone we've realized that both my parietal cell antibodies and Intrinsic factor Antibodies are approaching normal range. Still slightly elevated but much reduced. I presume this is because my immune system has nothing, parietal cells, left to attack. I'm hoping this will mean the inflammation will be reduced even though I've a belly full of Intestinal Metaplasia that will never heal. So my mantra about PA "It ain't just B12!"

Great post! Rexz

Wwwdot profile image
Wwwdot

Hi Wiz

I agree with Rexz too.

B12 is a team player not a Prima Donna so we need to consider the whole team.

And as Rexz says the disease is not static but progresses which in combo with our bodies aging is further challenging.

I know I need to keep on the ball and keep striving to find ways to minimise symptoms and to slow down disease progression.

I am on a plateau at the moment to rest and work out what to do next as I enter my third year of recovery.

Whilst every BODY starts from a different point and every BODY has a different set of health factors at play I think there are still some commonality in our health recovery.

1. We need to take ake control and not abdicate our health to anyone else.

2. Have an open mind but make up our own mind based on evidence

3. Choose our counsel wisely - some FB groups are toxic

4. Have a plan that respects our mind and body so gentle and gradual changes and let it adjust

5. Keep notes as this is a lifelong project!

6. Allow ourself plateaus to rest

7. Use our notes to recognise milestones, celebrate them and share to inspire others

8. Row our own boat and enjoy the journey with other likeminded FABULOUS PEOPLES!

9. Find humor in our journey wherever we can. Humor is healing and even in small snippets is helpful. So look for it, find it, and have a laugh, or maybe even just a hidden smile to ourselves. (Rexz)

🤗🤗🤗

Rexz profile image
Rexz in reply toWwwdot

Another wonderful post Wwwdot

I'm visualizing we are all racing to the finish line in a row boat race. Only we each have only one oar, all going in circles!!! 😂 🤣

Can I add one thing to your list? Please, please?

Find humor in your journey wherever you can. Humor is healing and even in small snippets is helpful. So look for it, find it, and have a laugh, or maybe even just a hidden smile to yourself.

Best wishes, Rexz

Wwwdot profile image
Wwwdot in reply toRexz

Spot on Rexz.

Added!!

🤗🤗🤗

Rexz profile image
Rexz in reply toWwwdot

Is so nice to be additive. Even though I can't do math any longer! 🤣

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