how can you know that the so called "start up symptoms" are actually really this?? How can you know that they aren't just a worsening of your issues and the sign you re harming your body? Going straight to the wall untill you demolish it could maybe make you overcome the issue or either smash your head... this sounds extremely risky to me.
Poll: Freddd's B-12 Treatment Plan
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Freddd
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Hi Trollo,
Have you checked the lists of symptoms either in Active B12 basics or divvied up by nutrients effective on them in http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/ . The lists are near the end of the thread spread over multiple pages. I think 5 or 6 separate posts in all. Also it could be educational to read what I have actually said. Are your symptoms for the most part on these lists? The good news is that for those who don't have these symptoms and probably quite a few more, who are not deficient of any of these nutrients have no response to them. Lots of people without these specific sets of symptoms have tried, hoping for a miracle and haven't had it usually. It just doesn't do much of anything for those not deficient.
Let's get philosophical for a minute. What are you looking for?
Many years ago, when I had young children, also all suffering from the same nutritional deficiencies as I was, I told a true story worded in a certain way. Now, I'll retell it as best I can remember it. I borrowed the wordings from here and there for affect. My daughter's body was invaded by billions and billions of inimical life forms. In taking over her body and converting it to their own usage, they were making her very sick. We went to the local healer and a weirdly pink colored and strangely flavored concentrated mold extract was suggested, which we tried.
I left it at that for a few days and was roundly criticized for child abuse.
I then added "The bubblegum flavored amoxicillin controlled the strep infection very quickly".
The wordings one might use can affect how it is interpreted. The wording a person uses to themselves can affect how they think.
How old are you? Getting ready to die? Or are you young and wanting to have a real life? My life went down hill steeply from a broken back from a red light runner at age 24. By 26 FMS was on it's way. By 33 I had to change what I was doing as I was no longer up to it physically, selling insurance and investments. I had been developing software on the side for 5 years at that point, then it became full time. Six years later I had the full total CFS crash, I had to crawl to the toilet to vomit because I couldn't walk. It took 6 months to be able to exceed 50 feet walking distance. In early 2003 I could no longer focus my eyes well enough to read or even really watch a movie. It wasn't a corrective lens thing. The muscles wouldn't work sometimes. I had a couple of hundred symptoms and life was non-stopping misery and getting worse. I was dying from congestive heart failure. My muscles were all atrophying. I WAS DESPERATE! I wanted to live a normal life more or less. I have been running a 10.5 year longitudinal study, myself, and a multitude of traveling companions. I was desperate enough to start with the only thing that had success in healing neuropathies, MeCbl, and debug all the reasons it wouldn't work at various times.
Are you looking to make your last years more comfortable or to get back a middle age I never had or maybe get well and still have some of your youth? Are you desiring to actually heal if possible? Do you hope it is possible? Are you desperate because this is destroying your life? If you wait until it is destroying your life whatever works will become less effective in how extensive the healing can be.
If a person has a form of damage in CNS deficiencies of both or either B12, which can occur separately from the body level of B12, the longer the delay the greater the damage that may not heal or even stay in remission enough. The clock could be ticking on that one.
So that you understand what you might be dealing with, b12 deficiencies is that it can cause the blockade of over 600 biochemical reactions on about 5 different levels of "triage" within the body.
The responses turn on by layer. And since there is up to a 4 way deadlock, plus half a dozen other possibly deadlocking by combination items and another half dozen or so significant modifiers or drivers and who knows what else.
It is complicated If you can figure out a way that works at all, great. If it works "better" great. If it works for other people, great.
I had started working on this by 1978 when the "non-specific" symptoms became a problem, and solved it in theory. Since then I have devoted more than 25,000 hours to solving this problem. You may find it more effective to think about things in terms of pragmatic effectiveness rather than fearful speculation. After all it may be your life that is at stake. Mine sure was.
ahmo
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Here's an excellent vid re the terrifying things that can be caused by B12 deficiency. Now that I'm apparently "healed", after 10 years ME/CFS (only 10 years...), I concur w/ Freddd's hypothesis that ME/CFS is a B12 deficiency illness. Might not be true for everyone, there are those who have viruses, maybe other things. I myself uncovered and treated my genetic problems w/ methylating. But my return to normality after all these years has happened now, after 9 months on the fully implemented protocol. And Fred's brilliance in establishing the Deadlock Quartet is, I believe, what raises his protocol to the top of the heap. cheers, ahmo
http://www.youtube.com/watch?feature=player_detailpage&v=BvEizypoyO0
And another from Dr. Ben Lynch, MTHFR expert, "Folate and Methylation Defects and Metabolism: 2013 clinical Breakthroughs
"Common genetic polymorphisms along with their effects and interactions with diet, xenobiotics, nutrients and medications
"The pathways of folate metabolism, B12, transmethylation, transsulfuration, SAMe (including Creatine and phospholipids), mitochondrial function, detoxification pathways and cell membrane functions."
http://www.youtube.com/watch?feature=player_detailpage&v=-lCQp0KkSB4
http://www.youtube.com/watch?feature=player_detailpage&v=BvEizypoyO0
And another from Dr. Ben Lynch, MTHFR expert, "Folate and Methylation Defects and Metabolism: 2013 clinical Breakthroughs
"Common genetic polymorphisms along with their effects and interactions with diet, xenobiotics, nutrients and medications
"The pathways of folate metabolism, B12, transmethylation, transsulfuration, SAMe (including Creatine and phospholipids), mitochondrial function, detoxification pathways and cell membrane functions."
http://www.youtube.com/watch?feature=player_detailpage&v=-lCQp0KkSB4
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What i know is that in this Forum there are reports of people who had the 'so called' start up side effects (that you say it should last for a few weeks) for monthes!! I can't remember who said that but i remember i read a post of somebody who reported terrible worsening of symptoms and new terrible issues for more than 1 year, then he stopped your protocol. Do i remember wrong? If not, how can you have the courage of defining 'start up symptoms' issues that last for monthes?? The same dilemma it exist with the so called 'detoxing' that is probably the same (others call it over-methylation?) thing but explained with different hypotesis; how can a detoxing lasts for monthes if not years? I find it absurd.
P.S. All my unmotivated fears (how you consider them) aren't from some other place or remoto individual, but from what i read into this Forum.
Freddd
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HI Trollo,
As I attempt to help people through "startup", identify induced deficiencies and so on. I also start right off with the 95% reasons and most of the time there are all sorts of changes and "can't touch" items and things like that. Now with finding the effects of peoples intentional taking of all sorts of things that I think will cause them trouble and it does cause them problems is no surprise. You know, if you have a specific one in mind let's read all of them and see what things the person was actually doing. I would suggest that you try speaking much more objectively. And if you are going to quote me as saying something, cut and paste with a link. From what you say you are badly confused and have no idea what you have read.
Fredd, i can't go scrutinise the whole forum to find the post i'm referring to. If i understood well what you are saying is that such cases of extreme 'start ups' are always caused by other supplements the people shouldn't take with your suggested ones. Basically you are saying that the people who follow your protocol to the letter don't have start ups that lasts for more than 2 weeks, neither serious hypokalemia... am i right?
This is from this same Thread from Arx , Page 1 "One of my major symptoms were electric sensations,twitching and buzzing in my nerves throughout body, and most intense in spine and brain regions.Initially when I started the protocol with mb12, the sensations intensified. Now one can perceive that as getting worse or as Freddd mentions, nerves 'waking up'. I agree that he came from a coma like state, and many of us from a wired but tired situation. But I perceive that wired but tired state also characteristic of neurological malfunctioning. My symptoms did get worse, lasted for about two months and then the intensity of that startup was significantly reduced. Then I added adb12 to the protocol and the symptoms worsened even more, indicating adb12 deficiency. Then when I got a bit comfortable with the adb12 titration, I added Acetyl L Carnitine to the protocol(ALCAR). ALCAR totally blew me out, and this was just a few days back. ALCAR has made my symptoms increase tenfold as compared to the mb12 startup response.I almost felt psychotic the first time I took ALCAR. I had to and am still titrating it very carefully. Freddd mentions that a hyper response indicates extreme deficiency. Even though I feel terrible and this is the reason I think many don't continue with this protocol. I suspect myself to fall into the adb12/carnitine hypersensitive category,with cord,brain issues with little body involvement. I also have the anxiety characteristic as a base mental condition and exhibit a number of psychiatric symptoms."
It sounds like an horror story that lasted several monthes, it is not clear if these terrible symptoms finally disappeared or if this person still continue to suffer and hold up, sustained only by his faith in your ideas...
It sounds like an horror story that lasted several monthes, it is not clear if these terrible symptoms finally disappeared or if this person still continue to suffer and hold up, sustained only by his faith in your ideas...
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Sea
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trollo, I'm sure Freddd can speak for himself, but I think you are confusing what Freddd has actually said with what other people think he has said.
I don't always understand what Freddd writes, nor do I know enough to agree or disagree with some of the things I do understand. I do however think that Freddd has a heart to help people and I am thankful that he shares on the forum what he believes will help and readily answers questions that people ask of him.
I don't always understand what Freddd writes, nor do I know enough to agree or disagree with some of the things I do understand. I do however think that Freddd has a heart to help people and I am thankful that he shares on the forum what he believes will help and readily answers questions that people ask of him.
Freddd
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Hi Trollo,
You know, it would be best if you cut and paste and give a link so that anyone can read it in context. I don't have time to run around trying to find whatever it is you read. I want to see what I said in context, not your interpretation summary. It's already obvious you clear don't understand.
You know, it would be best if you cut and paste and give a link so that anyone can read it in context. I don't have time to run around trying to find whatever it is you read. I want to see what I said in context, not your interpretation summary. It's already obvious you clear don't understand.
Freddd
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Page 1 of what? Do you know how to place a link? at least to the page and then you can specify the number of the post, like yours there is 30. on this page http://forums.phoenixrising.me/inde...s-b-12-treatment-plan.3566/page-2#post-404599 There is a way to link specifically to the post but I'm not sure on how to do that. I've been accused of being old school.
I am sure I am not alone here in being too sick to pour over hundreds of pages in numerous threads to work out what the latest suggestions are on how to approach Methylation, and that saddens and frustrates me greatly as here might be something that can help me, if only it was more accessible.
At the moment, it's just too much for me to understand, let alone implement.
If there was a 'too sick to get my head around what this is all about' option in the vote, I'd have clicked that.
It would be so enormously helpful, if it were possible, for an up-to-date page to be maintained providing simplified step by step instructions. If this already exists, I'd be very grateful if someone could point me to it.
And thank you Freddd for sharing your experience and knowledge. I hope I might be able to benefit from it at some stage.
At the moment, it's just too much for me to understand, let alone implement.
If there was a 'too sick to get my head around what this is all about' option in the vote, I'd have clicked that.
It would be so enormously helpful, if it were possible, for an up-to-date page to be maintained providing simplified step by step instructions. If this already exists, I'd be very grateful if someone could point me to it.
And thank you Freddd for sharing your experience and knowledge. I hope I might be able to benefit from it at some stage.
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Post # 13
P.S. It is not difficult Fredd, even for an old school to find the post that arx posted on page 1 of this same thread even without a number or a link.
Freddd
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OF THIS SAME THREAD. Well what do you know. And how was I supposed to guess that? It's only difficult when you want to play it as a guessing game.
ahmo
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These are my suggestions for finding the guts of Freddd's Protocol.
Deadlock Qtet: L-Carnitine Fumarate (LCF), Methylfolate; AdenoB12, MethylB12. This definitely did the trick for me, transformed my life.
This might be the shortest of Freddd’s explanation: http://forums.phoenixrising.me/inde...t-hole-insufficiency.22614/page-2#post-345537
This is the long, comprehensive version:
THE COMPLETE METHYLATION REVIEW Fredd Feb 2013
http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/
And here something re methylation/folate symptoms:
http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-10
And on the role of B vitamins:
http://forums.phoenixrising.me/index.php?threads/getting-back-to-balance.24134/
In my post number 27 i wrote clearly "This is from this same Thread from Arx , Page 1 "One of my major..."
No guessing game at all
Freddd
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And "which same thread as" ??? you did not say "as we are posting on right now". I didn't know what "same thread" you were referring to. I clearly did not understand what you said so you kept giving cryptic answers instead of specifying. Oh well, have fun playing it however you like. I hop around. I go by alerts, not threads typically. A virtual conversation with a person may have a dozen referents. So don't assume a person has the same referents as you do. It causes endless miscommunications and misunderstandings.
Freddd
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Hi Trollo,
I read fast and don't go of and read backstories if it isn't made easy. So let's make this easy. I would suggest that we each use different meanings for "startup" (responses, reactions, symptoms, etc.) and have different expectations. My expectations are from being sick much of my life and then largely healing, having worked on it since 1971 when my M-I-L got me going on vitamins. I mean all sorts of things that START following the start of various nutritional items. It includes the starting up of healing that can continue for years. It can cause induced deficiencies that have to be dealt with including low serum potassium which can be dangerous. ANY methylation protocol will cause that when methylation starts, and it starts suddenly, or when methyltrap ends or when ATP startup occurs, and that can go on for a year, these things happen suddenly, on or off. Correcting those usually gets things running again until something else stops it. You were expecting that maybe 600 different biochemical processes starting up don't have any effects? Each time I added a new item I had a new round of somewhat different assortment of startup items. It was how I could tell that something was being effective. If there were no effects from taking it wasn't the key to lack of healing. Healing can hurt a lot for years. So? I also said that it would have been easier to just die than to heal. That isn't advice. It was an opinion. I was very sick for a long time. The day I started MeCbl I stopped being depressed after a lifetime of it, my vision returned to normal from dimmed and often unfocusable so I knew what was happening had to be good and I was in the process of healing.
I was desperate and willing to suffer discomfort for a few years more if that is what it takes to heal. I had been totally sick and flattened by 17 years at that point and sick with FMS for another 13 years before that.. Also, we were solving it here as it was happening. It was all those people miserable with "detox" for months or years when I arrived, that pointed me at folic acid, folinic acid, paradoxical folate deficiency, donut hole paradoxical folate insufficiency, the effects of excess B1, B2 and/or B3. Those last 3 really just figured out and being confirmed by people in the last month or two. Also, finding that a common supplement or treatment, NAC and/or glutathione, can cause "detox" yet again in the form of induced b12-methyltrap manifesting first as folate deficiency. So peoples miseries, mine included, have pointed the way over and over. The 95% reasons for b12/folate therapy not working is basically a debugging list. I took what I found on the internet that got response at 5% and got it up to about 95% and very predictable. People's problems are seldom solved immediately and is in progress or that they have other complications which is very common. I have what is so far permanent damage from b12/folate deficiencies, because some of the nerves are not quite gone completely they hurt instead of being numb. I got broken in half sideways 41 years ago and plenty of damage to go around. It's a very rare person who has a "pure case". But of course there is no such thing. Over the years we get damaged and it doesn't all heal all the way. Each of us and all the treatments used are works in progress. You were hoping for perfection or miracle cures perhaps?
I read fast and don't go of and read backstories if it isn't made easy. So let's make this easy. I would suggest that we each use different meanings for "startup" (responses, reactions, symptoms, etc.) and have different expectations. My expectations are from being sick much of my life and then largely healing, having worked on it since 1971 when my M-I-L got me going on vitamins. I mean all sorts of things that START following the start of various nutritional items. It includes the starting up of healing that can continue for years. It can cause induced deficiencies that have to be dealt with including low serum potassium which can be dangerous. ANY methylation protocol will cause that when methylation starts, and it starts suddenly, or when methyltrap ends or when ATP startup occurs, and that can go on for a year, these things happen suddenly, on or off. Correcting those usually gets things running again until something else stops it. You were expecting that maybe 600 different biochemical processes starting up don't have any effects? Each time I added a new item I had a new round of somewhat different assortment of startup items. It was how I could tell that something was being effective. If there were no effects from taking it wasn't the key to lack of healing. Healing can hurt a lot for years. So? I also said that it would have been easier to just die than to heal. That isn't advice. It was an opinion. I was very sick for a long time. The day I started MeCbl I stopped being depressed after a lifetime of it, my vision returned to normal from dimmed and often unfocusable so I knew what was happening had to be good and I was in the process of healing.
I was desperate and willing to suffer discomfort for a few years more if that is what it takes to heal. I had been totally sick and flattened by 17 years at that point and sick with FMS for another 13 years before that.. Also, we were solving it here as it was happening. It was all those people miserable with "detox" for months or years when I arrived, that pointed me at folic acid, folinic acid, paradoxical folate deficiency, donut hole paradoxical folate insufficiency, the effects of excess B1, B2 and/or B3. Those last 3 really just figured out and being confirmed by people in the last month or two. Also, finding that a common supplement or treatment, NAC and/or glutathione, can cause "detox" yet again in the form of induced b12-methyltrap manifesting first as folate deficiency. So peoples miseries, mine included, have pointed the way over and over. The 95% reasons for b12/folate therapy not working is basically a debugging list. I took what I found on the internet that got response at 5% and got it up to about 95% and very predictable. People's problems are seldom solved immediately and is in progress or that they have other complications which is very common. I have what is so far permanent damage from b12/folate deficiencies, because some of the nerves are not quite gone completely they hurt instead of being numb. I got broken in half sideways 41 years ago and plenty of damage to go around. It's a very rare person who has a "pure case". But of course there is no such thing. Over the years we get damaged and it doesn't all heal all the way. Each of us and all the treatments used are works in progress. You were hoping for perfection or miracle cures perhaps?