Hello all. I'm new here but have been on posting on the Wrong Diagnosis forum for nearly three years. I have learned a great deal from all of you and have been reading here frequently for many months. Rich, I very much appreciate all the perspective that you provide and your willingness to help sort through this maze.
I have been on Fredd's protocol for nearly three years. You have likely heard a story similar to mine BUT I thought it would be helpful to Rich and others to know that Fredd's case may not be that unique. The reason I come to that conclusion is that I, too, cannot be off of the protocol for any more than a few days and all the symptoms come raging back. My sister-in-law is in the same boat.
This was my regimen each day. 3 of the 5,000 sublinguals per day. 1 Adeno B12, Fish Oil, BComplex, Solgar Metafolin 800 msg, Zinc (15 mg). I did this for nearly 2 years but could not fully recover. I tried many of the other co-factors. I had continuous buzzing/tingling in my hands and left shoulder. When I switched to injections I had pretty significant start up and then things really improved.
I have now been on the injections of Methylcobalamin (7-10 mg per day) for over a year. Many things have improved but if I go more than 2-3 days without an injection I relapse very quickly. The first symptoms that begin to emerge when I stop is terrible gastritis and shortness of breath.
Here is what I have learned:
The symptoms I had began nearly 10 years ago and were always explained away. By the time I figured it out significant damage had been done.
It takes a VERY long time to heal once nerve damage begins.
I have not permanently healed and must stay on the protocol or risk having a bad crash and I can barely function. I do not want to ever feel like that again. If I did have a methylation block, it doesn't seem to have lifted in three years of pretty aggressive treatment.
If I go off the protocol the first symptoms to appear are severe gastritis and shortness of breath and then the tingling and internal tremors begin.
In the last three years, I personally know more than 10 people that this has happened to. That is a lot. Something is going on that medicine and science has can't seem to figure out or have explained away.
I so very much appreciate the debate on this site as well as the continuous research that those who post so willingly share.
Oh, as an aside. All the testing done by my physicians came back "normal".
Rich---do you have any thoughts on being "dependent" on the methylation protocol because it appears that Fredd and I fit that category.
I have been on Fredd's protocol for nearly three years. You have likely heard a story similar to mine BUT I thought it would be helpful to Rich and others to know that Fredd's case may not be that unique. The reason I come to that conclusion is that I, too, cannot be off of the protocol for any more than a few days and all the symptoms come raging back. My sister-in-law is in the same boat.
This was my regimen each day. 3 of the 5,000 sublinguals per day. 1 Adeno B12, Fish Oil, BComplex, Solgar Metafolin 800 msg, Zinc (15 mg). I did this for nearly 2 years but could not fully recover. I tried many of the other co-factors. I had continuous buzzing/tingling in my hands and left shoulder. When I switched to injections I had pretty significant start up and then things really improved.
I have now been on the injections of Methylcobalamin (7-10 mg per day) for over a year. Many things have improved but if I go more than 2-3 days without an injection I relapse very quickly. The first symptoms that begin to emerge when I stop is terrible gastritis and shortness of breath.
Here is what I have learned:
The symptoms I had began nearly 10 years ago and were always explained away. By the time I figured it out significant damage had been done.
It takes a VERY long time to heal once nerve damage begins.
I have not permanently healed and must stay on the protocol or risk having a bad crash and I can barely function. I do not want to ever feel like that again. If I did have a methylation block, it doesn't seem to have lifted in three years of pretty aggressive treatment.
If I go off the protocol the first symptoms to appear are severe gastritis and shortness of breath and then the tingling and internal tremors begin.
In the last three years, I personally know more than 10 people that this has happened to. That is a lot. Something is going on that medicine and science has can't seem to figure out or have explained away.
I so very much appreciate the debate on this site as well as the continuous research that those who post so willingly share.
Oh, as an aside. All the testing done by my physicians came back "normal".
Rich---do you have any thoughts on being "dependent" on the methylation protocol because it appears that Fredd and I fit that category.