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An Interesting Experience This Summer in Active B12/folate Healing Startup

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Oct 12, 2013.

  1. Freddd

    Freddd Senior Member

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    I spent most of the summer at a membership RV camp out in the foothills Southwest of Denver. In the course of day after day of hard recreation and rebuilding a 336 sq foot deck that was rotting out I met about a dozen people with these various symptoms of FMS and CFS, some diagnosed, some not.

    Of the ten or so that wanted to try the vitamins and responded, every one of them had a clean and successful startup regardless of which exact symptoms they had because they didn't put their identities in their illnesses or theories. They were willing to suspend disbelief long enough to actually give these things a try as stated and get started, yes with potassium and more Metafolin needed generally on day 3 and approached with a straightforward problem solving attitude. There was nobody taking hundreds of mgs of various b vitamins or glutathione. The one person having terrible "detox" from Cerefolin with NAC was able to reverse that with straight Metafolin with the other 3 of the deadlock quartet. She was feeling better in 1 day, skin lesions half healed in 3 days and all traces gone in a week.

    None of them had any favorite theories so they didn't alter things, add extras, skip steps or anything else. None of them had a belief system that had them insisting they had to do things. They didn't know "detox" from a hole in the ground. Boy, it was so easy. Reminds me of all those folks back on WRONG DIAGNOSIS that were looking to solve their problems without the precondition that it had to fit their beliefs. There the discussion progressed step by step from initial start up and through each layer. Nobody argued "detox" for the hundredth time and insisted on keeping it year after year.

    As Rich said some months before his death, 3 months is plenty of time to know if what one is doing works. And that includes EVERYTHING one is doing because even one item, too much or too little or just wrong, can completely prevent healing. It is delicate. So it is quite predictable that a person taking glutathione will NOT succeed in general healing startup and so on. Personally I found that when I learned how to determine that healing has stopped or something is going wrong in a few days or week, progress can be much faster than waiting years.

    It was indeed a vacation. Nobody kept banging their heads against the stone wall. Of course head banging or not is free will. Have fun. Good health to all.
     
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  2. SJB944

    SJB944 Senior Member

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    Can I just say however, if you don't have a clean and successful start up, if your symptoms do not fall clearly into the categories Fred has described numerous times, it doesn't necessarily follow that this is because you have put your identity in your illness or theory -- this hints of the sort of psycho babble that has done many people lots of harm.

    It implies that if it doesn't work for you, you are the problem. (Which, I don't think is Fred's intent.)

    Not everyone has a clear symptom cause and effect, not everyone has the skill (or cognitive ability) to interpret symptoms and put it altogether to unwind the tangled web of this illness, even if you reject the detox argument (which I largely do).

    What you've done and do Fred is pretty amazing, unfortunately it isn't the solution for everyone.
     
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  3. Freddd

    Freddd Senior Member

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    HI SJB944l,



    You are right. It doesn't mean a thing. I wouldn't even have mentioned it this time except that it happens approximately like that every time and this was the most unusual. Decades of experience in the group health business tells me that there is pay dirt in finding out the cause(s) of the difference(s) when it repeats this reliably and predictably. I'm a systems analyst. I really don’t care what the system is, I’m just learning it



    It implies that if it doesn't work for you, you are the problem. (Which, I don't think is Fred's intent.)





    It DOES NOT imply that unless a person is inclined to think that way, and that itself might be because of neuropsyc changes. The really important question it raises is "WHY are these populations with similar symptoms and similar startup effects so very different?" Do they have their beliefs because of their symptoms and past treatment histories? Many people here went through lots and lots of docs before many giving up on them. I went through more than 100 practitioners and $200,000 of my own self pay money getting made sicker by side effects and having zero percent effectiveness at healing anything. I’ve been working on this project for about 25,000 hours since 1979. It took 27 years to get some pain relief from the medical system. It took me 6 years of chronic daily headache and 3-5 day killers each 2 weeks, recording every headache, pain, medication etc before I learned to control and then prevent the headaches and then to repair the underlying cause. I'm sure there are people here with similar symptoms and a similar struggle with getting anything useful from their doctors. There are a lot of people here that can count their severe illness phase in decades, as I can. I suspect more of the people here are disabled, are more severely affected than the people I meet at a campground though many of them had diagnoses of FMS and/or CFS and MS, many were undiagnosed. Not one of them was housebound by the severity. However there were people in wheelchairs for various reasons and quite a few people who are visibly unwell. And of course not everybody responds who has some of the symptoms for all sorts of reasons

    Sometimes things can go wrong disastrously for the person, when nothing can be effective. One man I’ve known for about 5 years looked awful. We sat and talked at length. He had over heard me talking with somebody else (who had a great success story since starting the vitamins last year) and wanted to try them because of his severe fatigue. They had no effect. He barely might fit the symptoms profile in some ways so it didn’t look promising, but he wanted to try. It wasn’t the miracle he was looking for. In talking he had told me he was having some tests. It turned out 2 days later when he got his medical tests back, he suddenly said goodbye and left to do his bucket list.



    Can I just say however, if you don't have a clean and successful start up, if your symptoms do not fall clearly into the categories Fred has described numerous times, it doesn't necessarily follow that this is because you have put your identity in your illness or theory -- this hints of the sort of psycho babble that has done many people lots of harm.



    So what do you find so awful? That I claim to be able to predict effectiveness of active B12/folate treatment by beliefs? That can mean any number of things. A study in pain medicine some years ago showed how easy it was to predict who would develop addiction problems with prescription pills. It turned out that 85% of the pain patients that have addiction problems are already addicts to tobacco and/or alcohol and already have “stinkin’ thinkin’” as some call it, Addiction thinking as others might call it, going strong. They have all the justifications already active. Working in the industry I identified the belief systems that will predict a lack of satisfaction with opioid therapy and those people also were more likely to behave like addicts, as a logical outcome of their stated beliefs. Working with thousands of people with tapers through the years I found a different set of beliefs would correlate with withdrawal being very difficult. What is cause and what is effect?. Does that mean one shouldn’t treat smokers or alcoholics for pain with opioids? It certainly cautions the provider of potential problems. Another behavioral belief system, continued tobacco smoking, can prevent many surgeons from doing spinal fusions on people unless they quit smoking since that can prevent proper healing.

    Yes, some people do put their identity in the illness. I have seen that in all kind of illnesses. At the pain clinic I go to I had to take an MMPI II normed on pain patients. There was a 5 month waiting list just to get to the entry procedure. At that time, 2000, it was made explicitly clear to me that I was being treated with strong opioids because of my physical injuries and NOT because of my diagnosed FMS and CFS. However the whole group of doctors and 2 physical therapists all gave me a group physical exam. They asked me if I thought I could rehabilitate after so much pain and disability for so long. At that time there were articles saying, in pain specialist oriented publications, that people who had been in severe pain 20 years or more should NOT be treated because they rarely respond well and will worsen your (the pain specialist’s) “stats”. I spoke up and said that I hoped they didn’t believe such drivel. I told them that my rehabilitation will depend on fixing whatever is actually wrong after the pain is reduced enough to see what it is.



    They did clearly verify the FMS as well as study my traveling collection of x-rays, MRI and CT scans and poke and feel and stretch and everything else. They are very aware that some people will lie to them to get the pain meds and others will construct a story that doesn’t hold up under physical, lab and imaging considerations (correctly or wrongly as I know from seeing the long term results etc). I got referrals from an orthopedist, a neurologist and an internist to the pain clinic.



    I have personally worked some hundreds of people step by excruciating step through startup and the first couple of years. When somebody would come to me and say that they were having xyz problems with the nutrients I start by taking them through the 95% reasons that ACTIVE B12/FOLATE doesn’t succeed in achieving “startup”.



    THE 95% REASONS B12 AND FOLATE THERAPIES FAIL

    Version 2.0 - 03/10/11, Version 2.1 - 05/08/11. Version 3.0 – 10/25/2012, Version 3.1 10/26/2012, Version 11/05/2012 3.2, Version 3.3 - 10/14/2013



    1) They take an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10-30mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesn’t work, oh well, that’s the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzymes or ATP

    2) They take active b12 as an oral tablet reducing absorption to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorption back to that same 1% and limited to binding capacity. With sublingual tablets absorption is proportionate to time in contact with tissues. I performed a series of absorption tests comparing sublingual absorption to injection via hypersensitive response and urine colorimetry.

    3) Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.

    4) For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesn’t work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.

    5) They don’t take BOTH active b12s.

    6) They don’t take enough active b12s for the purpose.

    7) Lack of methylfolate

    8) Lack of sufficient Methylfolate, a dose can start more healing than the same dose can complete.

    9) Paradoxical Folate Deficiency - Folic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms. Folinic acid is taken which can block at least 10-20 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.

    10) Lack of l-carnitine fumarate (rarely ALCAR), the 4th of the Deadlock Quartet

    11) Lack of other critical cofactors.

    12) Lack of basic cofactors

    13) Glutathione, glutathione direct precursors, NAC and /or whey is taken causing what is often called "detox" while actually being induced folate and b12 deficiencies.

    14) Having many additional supplements and herbs of unknown interactions and effects.

    15) Too much (relative? Absolute?) B1, B2, B3, Biotin and possibly others.





    These are the result of debugging the program. I have had lots and lots of experiences where the person has multiple possibilities of not working suggested by the list. Usually after they correct ALL of the things, ie ceasing glutathione, changing brands, stop chewing the B12 and keep the b12 for 2 hours under lip. Even one small thing can mess up the whole thing, like too much B1, B2, B3 etc. Many of the people who are most vocal against my describing this have never actually tried it as written since they believe otherwise and so sabotage (intentional or not) the possibility that it might work for them. They may be right and it can’t possibly work for them but there is no way to tell for sure. They never actually find out because the modifications made assure it won’t work. It is really quite touchy. My internist flat out said “it’s too complicated for almost anybody”. He said “Very few comply well with a program of more than 3 meds taken at different schedules per day. He considers a 30 item program quite impossible for most people.

    Some people who believe that neurological healing should feel good, quit doing it when healing nerves hurt like hell. There are certainly beliefs that influence behavior.

    Many of the people who believe in “detox” made up of folate and/or potassium deficiency symptoms choose to continue with them for years instead of actually treating the induced deficiencies. An interesting item from years ago was that people who had terrible responses to milk were often unable to give it up and the same with wheat. The writer used the term “addiction” to the biochemical cascade caused by these things that keep people coming back. That may be. I don’t know. My actual experience is that one person, a good friend, I knew didn’t get desperate enough to actually fully eliminate milk, cheese and whey from her diet for 5 or 6 years after I suggested that her symptoms fit. After she finally gave up ALL of it she started healing rapidly and feels good she wants to start eating it again. Each time she starts up after the second or third occurrence her inflammatory gut cycle starts all over again. Her desired belief kept her sick for years

    People who find they got a little help from large doses of B1, B2 or B3 while taking HyCbl or CyCbl and folic acid often won’t drop it before trying the active b12s. Their belief is firm so they won’t allow the possibility that active b12/folate makes the other vitamins more effective so they might need less for a good balance.

    People’s beliefs as demonstrated by their practices affect them in all sorts of ways. There are vegetarian who starve themselves of b12 for decades. It’s a major cause of infertility and all sorts of health problems in India.

    So you may believe anything you like about what it means that indirect measures, ie. questions about beliefs, can affect what a person does and does not do. There is a campaign against Polio vaccine going on in Pakistan. So a belief against polio vaccine makes it more likely that those folks’ children will get polio.

    I don’t do psychobabble. I completely dismiss “conversion disorder” whose main symptoms are hallmark b12 deficiency symptoms invented in concept 70 years before B12 was discovered. Like many of you I have had a lot of psychobabble thrown at me; “conversion disorder”, “secret alcoholic”, psychosomatic disorder, hypochondriac, internet medical information disease (similar to medical student disease), medical industry disease, outright liar, etc. When those docs don’t understand what they were seeing they call us names. It is a major way of denying care. If a person claimed “CFS” they were dismissed as a hypochondriac with” yuppie flu” not that many years ago.







    So in this noted occurrence this summer, that they ALL had a clean and successful startup was notable because it was different. Usually there is a much larger spread of results and various different variations of startup symptoms. I have met plenty of people in plenty of disease categories who identify with their disease. It was part of my job to report on, analyze, categorize, complaints and dissatisfactions and develop questionnaires to get the details, along with other consultants in annual plan reviews. People with FMS and CFS were often far more dissatisfied than insured people with cancer or a whole lot of things with their treatment. They predominated on the lists of many plans. At least with cancer they KNOW what is wrong and the odds of survival for various periods and treatments. We also looked for maltreatment by doctors and all that. We worked for the plan trustees for the benefit of the members.



    I don’t know what causes the beliefs. My experience however is that the damage precedes neuropsyc changes. There is a substantial subset of folks here who appear to have specific damages located in the limbic system with very predictable anxieties, fears and predictable hyper-reactions to certain nutrients. Further a subset of these people who take benzos have a certain specific unusual reaction to benzos, again clearly affecting the brain in a in specific ways. When things influence dopamine, serotonin and all sorts of neurotransmitters and the actual physical structure of the brain you think it’s not going to influence cognitive, mood and personality characteristics? As these deficiencies cause damage by demyelization, inflammation and unknown reasons, they are KNOWN to affect moods and personalities up to and including florid psychosis, they cause multisensory hallucinations (not delusion though delusion may occur) including missing, augmented and changed flavors and smells, visual movement “things”, hearing “things”, sensory including feeling things that don’t exist. Hallucinations are simply “noise” in a sense, caused by short circuits, malfunctioning nerves, or low signal or missing signal, like sensing a missing limb. Neuropsychological problems are massive in these illnesses, from the near universal brainfog and generalized anxiety, to not being able to smell strawberries to what normally good food smells like missing half the odors and the rest changed. A lot of the pains of FMS appear to be neurological pain, as the advertisements for certain prescription drugs now mention.

    A major problem has always been the complicated nature. I haven’t found a way of simplifying things and still have it work. In fact as more of the roadblocks are figured out, the more complicated. Nutrition is complicated , especially since most of the research is based on people with folic acid and CyCbl in their diets. I’ve spent over 25,000 hours since 1978-79 when I started working on figuring this out. And the sum of all the alternate pathways and comorbidities is unknown. It is quite complicated and there are not any simple solutions that I know of that work.





    Not everyone has a clear symptom cause and effect, not everyone has the skill (or cognitive ability) to interpret symptoms and put it altogether to unwind the tangled web of this illness, even if you reject the detox argument (which I largely do).

    I’m working on a software design to “unwind the tangled web of this illness” and what are the differences. Seeing the effects of B1, B2 and B3 will in the end actually simplify things because some unknowns are becoming partially known.
     
  4. SJB944

    SJB944 Senior Member

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    Thanks for the clarification Fred. You largely address my reading of you initial post. The beliefs issue is interesting, open to debate and easily lost in semantics. But I take your point.

    I think software would be brilliant, I am too often frustrated, if not paralyzed, by the complexity of my reactions. I fit, but don't fit, get sidelined by other theories (with good foundation, apparently), have to start again from scratch, and am constantly thwarted by trying to work out what causes what, when and how. When it works, it is all so simple -- when it doesn't its a very tangled web.
     
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  5. caledonia

    caledonia

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    Looking forward to seeing the software whenever you get it done.
     
  6. SJB944

    SJB944 Senior Member

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    Hi Fred,

    If a b-complex causes issues, do you have a suggested approach to what individual b's to take and in what order? (assuming already taking Adb12, Mb12, and methylfolate).

    When you react to the basics, it gets all the more complicated!

    Cheers
    SJB944
     
  7. brenda

    brenda Senior Member

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    Really pissed off with you Freddd over your attitude towards people here who have had to quit your protocol and have been rejected as 'weaklings' when they did not 'push through' their 'start ups' where actually they were having symptoms that showed something otherwise and serious and other than potassium deficiency was taking place and which indicated possible damage to themselves.

    Egotism should haves no place amongst those who set themselves up as healers.
     
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  8. Freddd

    Freddd Senior Member

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    Hi Brenda,

    "been rejected as 'weaklings' when they did not 'push through'"

    THOSE ARE NOT MY WORDS THOUGH A NUMBER OF PEOPLE HAVE TRIED TO REPRESENT THEM AS WHAT I HAVE SAID for their own misunderstandings or reasons.


    I rather thought that the whole idea of "pushing through" to be rather stupid and I don't call or think people are weaklings. Somebody is projecting quite a bit or something.
     
  9. Red04

    Red04 Senior Member

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    I dont see many weaklings but I do people who want to mix things up, keep taking certain supplements they need, they are afraid to take certain amount of supplements because of what they already "know". You can read this over and over and over on here.

    People will often say that they are doing some hybrid of the protocol. Why? Just follow the protocols at first. Don't overcomplicate it. Forget what you "know". It isn't working or you wouldn't be here. Start from scratch. Get someone to help you track symptoms.

    I know there are a few people who say they tried the protocol exactly, but 90% of the people that say it doesn't work, never started from scratch. They want to take hydroxb12 or some other key deviation. At least, according to my 3 years of reading just about every post on here.
     
  10. Freddd

    Freddd Senior Member

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    Hi Red,

    That is a giant BINGO. I know that your wife has learned that the hard way, experience as anybody who reads the history here on this site will know. Those that don't know history are condemned to repeat it. I trust your wife is doing well. She is one recovered person that I would not challenge to a race but then she would be racing for the Active b12 Protocol team. I'm looking for sponsors for a race for persons recovered from CFS/FMS based on different protocols. It would not be difficult to put together a 10k with 2000 ft of vertical times 5 days in a row race, absolutely impossible for a person with CFS/FMS. How many people can we get for the SMP team or the DETOX theory team or whatever protocols anybody wants?. Who would volunteer?. Histories would have to be verified. What size team prize would we need to get people interested; $10,000? $100,000? Let's have some fun with this and get all those recovered people out off the closet.
     
  11. stridor

    stridor Senior Member

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    I just want to point out that sometimes a hybrid-Freddd or other adulterated protocols may not be related to particular leanings or over-valued ideas/beliefs but simply an inability to do the full protocol. We come as close to it as possible and failure is not an intentional or unintentional sabotage of recovery.

    Carnitine made me sick in 2009, 2010, 2011 and again in 2013. It isn't a lack of trying or some belief system at play here. The other 3 have been wonderful and along with testosterone have improved my quality of life immensely. It has been suggested that ubiquinol may be beneficial.
     
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  12. Freddd

    Freddd Senior Member

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    Hi Stridor,

    Carnitine made me sick in 2009, 2010, 2011 and again in 2013

    My questions are of course, what were the symptoms in full detail please. They can tell so much about what is going on. The "yield" on each thing that is tried supplies useful information, very often specifically because of the various unpleasant side effects which can point very specifically at something. It presents a restatement of the problem at a different point.

    It has been suggested that ubiquinol may be beneficial.

    Or it might be dangerous. One of the CAUTIONS I have given for more or less 10 years is that CoQ10 can cause a sudden increase of blood pressure by 50 points or more in 2 hours after it is taken during some stages of healing up until an unknown point in healing when it subsides to no noticeable difference. I had that reaction and so have quite a few others.
     
  13. stridor

    stridor Senior Member

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    @ Freddd Carnitine increases brain-fog, loss of energy/fatigue and brings back the ME depression symptoms. Though I would say that the overall mood is darker with some irritability which is absent from my former "all-low monoamine depression" of ME. But that is admittedly subjective. The irritability could be due to having the horrible symptoms back again.

    It is gradual in onset over 2 or 3 days after starting it and takes about 48 hours until I am feeling better when I stop. I don't know if there is a change in temperature (which was one of my symptoms) and I don't know if it would return post-exertional fatigue because this last time I parked myself in a chair.
    The last attempt 2 weeks ago was my worst day since I started mB12 in Aug 2012. It is not appreciably different that the worst days of ME.

    Ubiquinol and I also have a history. In 2007, when I just started trying to cure Bipolar, I took it and it put me through a full cycle - that is I had a period of hypomania followed by the vegetative depression that was my normal. I took it again in 2011 and I don't remember it doing much of anything. I have no clue what I am doing any more - I just wondered whether there was some form of blockage further down the ETC from carnitine.

    I have also had to be very careful with ribose.
    In reading your posts and your recent caution, I will say that I take a lot of B2. I am very sensitive to shortages and get the skin problems, and capillaries circling the corneas. I don't absorb it well and have to pay attention to the colour of my urine to make sure I get enough. The first sign is parathesia of the skin of my face. I have some this morning because I was trying to cut back to 100 mg orally. I take close to the daily amounts of B2, B1, B5 and B6 by injection each morning with the MB12 shot.

    I think that my glutathione has be reduced all my life as I was mercury toxic since a young child. I had over 100 polyps and had my colon removed due to Hyperplastic Polyposis of which little is known - just messed up methylation (of the DNA I assume) and low glutathione. I can't find a probiotic that doesnt' give me the trots, sore intestines, nausea. Historically, probiotics help with the B2 thing.

    mB12 1 mg inj daily, mfolate 1000 - 1200 mcg daily (sublingual - don't absorb it that well either) adb12 8 mg daily (I think that I am topped up on this now) testosterone creme daily (tested low) hydrocortisone 25 mg/day and thyroid meds. I take mineral and omega 3 and pcholine and antioxidants as well. I am nearing the end of mercury chelation.
    Thanks Fred for everything you have done here. It would be a real pleasure to meet you some day. brad
     
  14. Violeta

    Violeta Senior Member

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  15. Freddd

    Freddd Senior Member

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    Hi Violeta,

    Fredd,is it possible that other things might be missing from the energy production cycle for other people? For example, I met a lady who had good results with her child when she started giving her aspartate.
    Absolutely. That is one of the things that makes it so complicated. For instance, carnitine is not a required nutrient. The body is SUPPOSED to synthesize what it needs assuming it has the amino acids it needs, but a lot of us don't. As the Acetyl l-carnitine is the type generally taken and generally not effective for FMS/CFS energy production I wonder why our bodies can't synthesize the form it needs. It's quite probable that there are all sorts of other things like that. That is where the fine tuning and customizing is very important.
     

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