Hi Arx;
It's been just terrible to read about your suffering through this.
I think you are wise to rest the protocol for now.
I wonder if a more pared down version may be better for you in the future. For instance, I found that adB12 actually irritated my nerves, so I've suspended it . ( I'm not sure that I will even need it, maybe I make it from mb12).
I cannot tolerate Carnitine either now. Many supplements, including carnitine, are too acidic, and they irritate my damaged nerves.
I take a very low dose of B complex, B1 and B6 specifically, also irritate my nerves, causing pain.
Hi Crux,
Thank you for your support. I will consider a new version of the protocol. I have experienced irritation of nerves from mb12,adb12 and carnitine. I want to share with you my experience on the protocol in short.
When I started off with mb12, it made me extremely wired mentally and lots of physical sensations(most intense in spine and brain). But after three months, some symptoms had healed. I reached a comfort level with mb12. So I decided to add adb12. Again, I had a very strong reaction to adb12. I did not and still don't know the dosage which Freddd has recommended. But I tried out random dosages of the Country Life Dibencozide and reached a level where I could tolerate the then protocol. Now I decided to add carnitine. I started off by taking 1/15th of the 500mg Doctor's Best Acetyl-L-Carnitine(ALCAR) capsule and had an 'out of the world' response. Symptoms which I thought had healed after mb12 reappeared with pretty much a tenfold increase in intensity. It was too much to bear mentally and physically. I read the 'Hypersensitivity Identified' thread and my private chat with Freddd who had pointed out that adb12 and carnitine are essential with a careful titration. So in some weeks I had reached a level of 3/4th of the ALCAR capsule, but I was getting worse. I was taking the carnitine everyday, along with 2000 mcg of mb12 and around 750mcg of adb12. I have experienced the need to increase methylfolate and potassium on two occasions:
1. After adding adb12 to the protocol
2.After adding carnitine to the protocol
To my surprise Freddd has mentioned this very increase in the need of folate and potassium as a sign of healing.
As a fellow traveler, I have some questions which I want to share:
1. Doesn't the nerve irritation indicate the very deficiency of the supplement causing the irritation?
2. You say that you can't tolerate Carnitine now as it irritates you a lot. It has always irritated me, that is why I considered a slow titration,even though dropping out of it after some time. How does one know the correct moment to add carnitine/adb12?
3. My understanding has divided the damage in two parts: neurology affected by mitochondria and neurology not affected by mitochondria. The methylation supps will help in healing neurology not affected by mitochondria. Things that produce ATP: adb12 and carnitine specifically, are also equally responsible for healing those damaged nerves,right? Won't the damaged neurological areas be healed by the very supplements irritating them? Isn't this what Freddd means, to not avoid whatever is irritating but try to tolerate it with careful titrations, as that irritation/sensitivity indicates the deficiency of whatever is causing the irritation/sensitivity?
4. What should be the adb12 dosage? I remember reading taking the sublingual daily then once a week or something. I'm not sure as it has not been mentioned specifically by Freddd and others who are following his protocol.
5.Please share your dosages of B1 and B6. Also, what forms of these vitamins do you take?
Folate is powerful, and some people may not need as much as others, at least in the beginning. ( I've had serum folate measured twice. The first time was in early 2011, and it was above measurable range. I was only taking 400 mcg. daily, of an active food based type. About a year later, folate in serum was measured again, and it was in the high normal range, even though I had been taking higher dosages.
So I think that my folate was bunged up in the serum, and that it took some time for the B12 too help me utilize the folate. Before that, when I had tried to increase folate, it was too stimulating and irritating, my insomnia worsened.
I agree with you. I didn't pay attention to folate in the beginning. Here in India there is a 7.5 mg L-Methylfolate tablet which I have cut into many parts. I have found the need to increase folate on two occasions as mentioned above. The serum test which you mention, is it the serum folic acid level?
I had the same experience. Before adb12 and carnitine when I increased my folate,I got bad headaches. Maybe the B12 utilized it over a duration of time,as you mention.
So, I wonder if when you chose to reapproach or create the protocol that best suits you, maybe , try B12 in lower amounts alone for a time, without additional folate, without adB12, without carnitine, to first heal the nerves.
I have thought of doing exactly the same. Start with mb12 and add adb12 and carnitine in a much gentler fashion than I did this time. Folate and potassium needs will be reassessed when another supplement is added after mb12, and sometimes in between.
You say try B12 alone for some time to first heal the nerves with B12. Doesn't healing the nerves require the additional folate,adb12 and carnitine ?
As I have described my experience above, I thought that my nerves in the spine had healed with mb12. My intermittent pain and continuous buzzing,vibrating,twitching,stinging sensations in my spine had healed 80 percent with mb12. After adding adb12, they came back again, but it was bearable.But after adding carnitine,it was a very very extreme response . I went from saying that "it has healed"(after 3 months of mb12) to "it has become ten times worse of what it was before the protocol"(after carnitine). The sensations had come back so strongly that some nights I spent sitting because I couldn't lie down. This is why I suspected rounds of healing, and that everything is needed, things that make ATP, things that provide myelin sheathing, and other methylation supps. I think everything is needed and healing takes place in rounds. But yes, I will go very slowly, get saturated with mb12 for some weeks, then add adb12 and carnitine in slow amounts.
Meanwhile, consider increasing Potassium in the diet, along with other minerals that may be calming. I have found Zinc to be extraordinarily calming, even sedative. ( If I take too much, it increases my fatigue, so I think it needs to be monitored. ) I also take Niacinamide for its calming effects. (I only take 250 mgs. nightly before bed, some people take more, but too much for me brings nausea. )
Yes, potassium helps a lot. I take around 4000 mg everyday now. The Potassium Citrate solution which I have found is extremely useful. I haven't considered Zinc seriously. How much do you take? I take 25 mg twice/thrice a week. Niacin is also good, provides calmness at times. Around 125 mg suits me. It's good to see that Zinc,Niacin and other minerals are helping you.
I feel that we need to develop our own personal protocol when we find that certain standards haven't suited us. Although, this process can be the very most difficult of all, I believe it may be the potentially the most successful. It requires us to be utterly self -observant, but not self- obsessed. And I haven't found anything in my life to be more difficult or painful than this. But, I haven't found anything else more effective in relieving pain, than this process.
Arx, please stay in contact, You've made many enlightening contributions here... Thank You...
Agreed. Custom protocols are the only way out. I feel really happy for you that you have found this to be effective in relieving your pain.
This process feels like the most difficult thing. Playing scientist and the lab rat being one's own body and mind is a very hard task. The severe brain fog and mental agitation makes it seem like impossible.
On a personal level,it is a very difficult test of patience and persistence for me and I think for everyone on such protocols. The hardest part for me is the enormous courage required and the isolation that goes along with it. I can't explain things to my friends and don't have the time and energy to even talk to them most of the time. Taking so many supplements and facing varying effects from them every single day, there is no time and health to get out of the house and meet friends and family. And all this could go on for an year. Conversations with people provoke questions from their side about my health and treatment, which is almost impossible to explain to them. Instead their concerning questions provoke anger in me. This phase of my life seems like a renunciation from studies,friends, and the world outside, into the challenging world of this process.
The only support and source of information has been from the members of Phoenix Rising. Thank you Crux for your support and contributions. I look forward to more discussions.