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What constitutes healing of ME/CFS/FMS?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Aug 4, 2014.

  1. Freddd

    Freddd Senior Member

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    I claim that I have intentionally and purposefully cured myself for FMS/CFS (American diagnoses) and quite coincidently Congestive Heart Failure of the particular variant I had. I also had a whole lot of other miscellaneous diagnoses abstracted from the same 200 symptoms that also are generally gone. I also have co-morbidities that are still present. I also maintain that others can do the same for themselves.



    “and you don't have the cure for it.”


    Clearly some do not agree with me. So I think it would be quite productive to start out by defining what a “cure” for FMS, CFS and/or ME would look like, from a naked eye viewpoint. I invite @Valentijn and any other interested parties to contribute ideas, definitions and so forth. To be able to talk about a cure we need to know what it means.


    Most of us here have or had symptoms that are other than are contained within the definitions of FMS/CFS/ME or that usually occur with them. I was broken in half sideways in a car wreck. That has left me damaged, and that hasn’t changed. I have Sub Acute Combined Degeneration and that is not included in the FMS/CFS/ME definitions. I had some virus along with my wife and many others locally that turned out to lead directly into CFS. It took my wife 3 months to recover. It was a terrible Christmas that year with 3 kids and both of us barely able to get out of bed. However, as the virus lifted, my symptoms “clarified” in the CFS/FMS pains and fatigue and so on. I had had early FMS symptoms since 3 years after the crash. Then 15 years later my body crashed totally. I and others from that period were treated terribly while it was “yuppie flu” and “an imaginary woman’s disease” and “It’s All In Your Head.” I got kicked out of practices for insisting that something physiological was REALLY WRONG. I had already located that my symptoms were from lack of MeCbl and AdoCbl. I can read and I did. It didn’t do any good. I did a 2 year 100 pill/day desiccated liver trial. The ”lights came on” (neurological brightening, depression lifted) 3 times in that period and got dumped out every time I got sick. It just wasn’t quite enough active b12 and actiove folate.


    Year by year the symptoms increased and worsened, I have a lifetime symptoms history. Finally in the late 90s I started getting FMS/CFS diagnoses, once it became acceptable enough to say it out loud. Even then my pain docs made it clear that they were NOT treating FMS/CFS but rather the documentable injuries from the car wreck. There were millions of us with this mystery disease and they were hanging us out to dry. We were write-offs, not to be taken seriously. I had all the symptoms in spades, and congestive heart failure to boot and lots of other things. You can almost diagnose FMS/CFS patients by the names we were called and how badly treated we were. Only chronic pain patients were abused as much or more. And I was that too.


    Part of the problem is that it isn’t a nice definitive disease like cancer or pneumonia. It’s a messy “syndrome”, a collection of symptoms and signs. When and how does it start and when and how does it end? Does it start with the first symptoms or not until one has built up all the required symptoms, perhaps 15-30 years after that first symptom? I had essentially all of them and then some, as well as some obvious co-morbidities. To me, it seems obvious that if the symptoms are gone and the medications being taken for the symptoms, discontinued, that a person has recovered. If their former physical capacities are more or less regained (age adjusted) and rehabilitated and able to go back to work and live a normal life, which can’t be mistaken for a CFS/FMS life, that one has been cured and some of the damage healed even. I’m not basing it on lab tests that show some biological indicator or other. Those tests never said I was sick which is part of the problem with FMS/CFS, no definitive tests.


    So the question is, if a person no longer has the symptoms defining a syndrome and no longer is taking medications for those symptoms and has been rehabilitated and can do all sorts of things a person with CFS/FMS literally can’t do, isn’t that the very example of a “recovery” and if it is done purposefully and intentionally and planned, it is then a “cure”? That doesn’t mean that a person’s genetically based nutritional needs are changed. I don’t mean that cure and recovery have to be different things, I’m just recognizing that some might make the distinction.


    In this definition I am not including co-morbidities. If a person has Lyme disease, while that might have been what pushed the person over the edge 15 years ago, if it is still present causing problems, then it is still its own problem and needs to be dealt with.


    So how do you define a “cure” or “recovery” or “healing” from CFS/FMS, if there are any differences. Do all the symptoms have to disappear 100% or just gone enough to not meet diagnostic criteria? Since so many of the symptoms are non-specific it is quite possible to have the same symptoms from other causes. Or do they just have to be gone enough that the medications are no longer helpful or needed and they are not a hindrance to living a normal life.


    I recognize a vast difference in not being able to walk 100 feet easily and being able to walk 5 miles a day, of being in terrible grinding fatigue 24/7 or having normal energy. The difference between the muscle pains of FMS and normal muscles is easily recognized. So from inside the body, being sick is a very different experience from being well. If you woke up one morning and were no longer ill with FMS/CFS would you recognize it? I did. My doctors and everybody in the office could see the difference 3 weeks after turnaround. My ex-wife didn’t even recognize me after not seeing me for 9 months. Everybody could see I was getting well. When is the line crossed to no longer having CFS/FMS?
     
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  2. sregan

    sregan Senior Member

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    When symptoms don't exist then we are call asymptomatic not cured. However, If there was a definite identified cause for CFS, there would be a definitive test and an way to tell if one has the cause or not.

    So if there is no good way to tell if someone has CFS then there is no good way to tell when someone is cured (or not cured).
     
  3. Adster

    Adster Senior Member

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    You could perhaps say you have cured your CFS/ME Freddd, but until the diagnosis actually means something, what has worked for you has the same relevance to sufferers as all the other available treatments, doesn't it?

    For me, if I'm taking a billion supplements every day rather than just eating a balanced diet, then I'm not cured or healed.
     
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  4. Freddd

    Freddd Senior Member

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    Hi Sregan,

    I make a distinction between Sub Acute Combined Degeneration. This is very poorly understood because of the legacy research on CyCbl and folic acid. For ease of description it always has low CSF Cbl levels and unlike MS, of the body, regardless of what the tests say. Otherwise it is very similar to a bilateral MS. It is considered "it can heal" if gotten to in weeks. With 30mg daily injected MeCbl that might be months to years depending on extent of damage and yet it can be put largely in remission. The symptoms I struggle with go back to demyelinations of 1992 at least. Demyelinations exist in sort of an equilibrium, always worsening and always attempting to be healed (with sufficient MeCbl and AdoCbl). The balance point depends on quantity and qualities of the MeCbl at least. For me, ANYTHING goes wrong, your fault, my fault nobodies fault my nerves get shot (Apologies to Big Jake).

    FMS (and CFS) are all, 100%, symptoms that appear to be the result of partial methylation block, methyltrap and partial ATP block (mitochondrial dysfunction), functional symptoms as opposed to damage, like Parkinson's, MS, SACD, (P)SNP that in some cases at least, the researchers say takes about 20 years of poor functioning of the mitochondria (in this case) to cause the damage that is then diagnosed as one of these incurable diseases.

    The lifelong depression I used to have was a direct result of deficiencies. If any one of them starts being deficient, as was the case when my CNS MeCbl decreased during the CL 5m trial, depression started coming back along with several other direct CNS MeCbl deficiency symptoms. It was a very interesting look at a purely CNS MeCbl only deficiency.

    However, If there was a definite identified cause for CFS, there would be a definitive test and an way to tell if one has the cause or not.

    So if there is no good way to tell if someone has CFS then there is no good way to tell when someone is cured (or not cured


    And that is why it is part of the mystery disease. When 200-300 symptoms are amputated from their causes and the causes mal-defined it is invisible in plain sight. Then at some point real damage starts occurring and these damages eventually come to predominate by the "typical" damages. We are paying the piper for these institutional blind spots. Thirty years ago one of the ski magazines had an article on differences in language, East and West. The Western skiers call ice Eastern skiers call and have 20 distinctions from frozen crust to ice rink ice which is the only real ice. Out west it is all powder, like the euphemism "frozen granular powder", "frozen hardpack powder" (white asphalt in eastern speak?) until it is ice and that is a word you never see in ski reports in the west. It got to be kind of a joke.

    Our health is no joke. Mysterious amputated symptoms that are hidden only by semantic errors cost me terribly in this life. Because of the legacy research there was no possible cure or prevention for my SACD when it first appeared but my MCV was alerted as it had been all my life. Again, from what cured it recently was not possible to get in 1992. Millions have chronic diseases damaging their lives that are preventable and curable if I am even approximately correct. There appear to be half a dozen or so main variations with the infant and juvenile forms not connected with the adult forms most likely and maybe not existent until later

    The good ways to diagnose CFS/FMS/ME will be found when the researchers ask the right questions without the blinders on.
     
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  5. Freddd

    Freddd Senior Member

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    Adster, The only thing that could cure me is probably changing lots of genes. I can't be cured for the need for the natural forms of vitamins in substantial quantity but the definitions of CFS/FMS/.ME don't include SACD. Taking those nutrients has cured the FMS/CFS/ME by every element of definition. A functional deficiency disease can be cured by correcting the deficiencies. The damage done is a different issue. CFS/FMS/ME are not defined by damage that they can see. And fortunately for lots of people, what has worked for me, especially the method, because each persons results are their own, and the functional definitions of partial methylation block, methyltrap and mito malfunction have worked for lots of people.


    For me, if I'm taking a billion supplements every day rather than just eating a balanced diet, then I'm not cured or healed

    That's a nice box to lock ones self in.
     
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  6. Adster

    Adster Senior Member

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    So it's not a discussion thread, just as I suspected.
     
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  7. Freddd

    Freddd Senior Member

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    It quite definitely is. I am discussing it and responding. If nobody comments or responds or discusses it's a lousy discussion. I don't know how many will agree or not with you or me or anybody else for that matter. Attitudes are important in healing. If you can't be healed on a diet then you can't be healed is I think an unkind thing to do to one's self. You are welcome to say that no healing or definition is possible with achievable things.. True it doesn't advance the idea of how to define being healed except by something so restrictive that healing is impossible for most everybody here to accomplish and it suggests no ways to arrive at something useful for the vast majority of us. There is no evidence at all that folks who need to take MeCbl and AdoCbl to heal ever re-establish the B12 system to how it was before the deficiency and all the experience is to the contrary. I dislike taking 3 bunches of pills a day and 3 injections., a total of perhaps 70 pieces. It is a real pain but a far cry from a billion.. But on the other hand I wouldn't want to live in those deficiencies. For that matter I would have been dead perhaps 10 years ago. I would have died as an infant without antibiotics. I've been on thyroid hormone since 8 years old. That also replaces an insufficiency or deficiency. The deficiencies made me sick from shortly after birth.

    My grandfather was diagnosed with ALS in 1942. He died in 1972. His old German family cook knew of a recipe for "nerves". She did an extract from 5 pounds of liver daily and he ate a stew made with that every day. That was in effect the only way to get a high dose of MeCbl and AdoCbl and methylfolate in those days when they didn't even know what b12 was. I couldn't handle it. The official medical treatment for pernicious anemia in those days was 2 liters of pureed raw liver daily to get that 1% absorption high enough to keep them alive. Most preferred to die than to do it with food.

    If asymptomatic of CFS/FMS/ME for the past 5 years or so and for the presumably rest of my life then perhaps that is a reasonable definition. CFS/ME/CFS is a creation of definition, assigning a meaning if one has at least 11 of 18 defined points. I guess a person doesn't have it if they only have 10 of 18. I'd prefer asymptomatic. ME is the only one with any kind of firm criteria. Maybe that is why we don't use it in the USA.
     
  8. Adster

    Adster Senior Member

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    Making a crude judgement on what you perceive to be my faulty attitude toward healing isn't really discussing something, but would appear to be just a "brute force" attempt to support your position, in my opinion.

    That's not what I said. What I said, put more clearly, was that if I'm relying on supplements to maintain or improve my health, rather than just eating a balanced diet to fulfill my nutritional requirements as I was pre-illness, then I'm not cured. I would consider it perhaps a treatment or partial treatment or management.

    I genuinely appreciate your efforts in trying to help people here. However you appear to me to be pushing toward saying ME/CFS/FMS, even though poorly defined and diagnosed, is always treatable, and now perhaps saying curable, using your protocol, if done correctly. I'm happy to be corrected on this though, if this is not what you are saying.
     
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  9. zzz

    zzz Senior Member

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    I was completely asymptomatic for a five year period three years into my illness. I was working full time, doing all my normal activities, and had as much energy as before my ME/CFS. In fact, for the first time in my life, for the last four of these five years I found that my body was fine with seven hours sleep instead of the eight I had always needed before. I thought I had really dodged a bullet by recovering completely from ME/CFS.

    Then I got sick again, and I've been completely disabled for the last 16 years.

    Unless a causative agent for ME/CFS is found and can be eliminated, I think we can talk only in terms of remission - not cure. Remission could be life-long or not, depending on one's individual circumstances.

    Note that what I mean when I talk about a causative agent (which may or may not exist) is different from a test or even a biomarker for ME/CFS. During my five-year remission, I never had any PEM (though I did before and after the remission), and I could have passed the two-day CPET with ease. The illness simply was not active then.
     
    Last edited: Aug 5, 2014
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    @Freddd, I expect you have considered this, but is it possible that your ME/CFS/FMS arose from the car accident, perhaps due to traumatic damage to the pituitary, and that this has healed over time?

    There was discussion about this a while back but I can't find the thread. I did a quick search of scientific journals for 'traumatic brain injury' in title/abstract and 'pituitary' in full text and found several papers that look relevant, including this one.

    What I'm getting at is that there seem to be numerous routes to developing ME/CFS/FMS, and thus numerous potential causes/combinations of causes, and that consequently there may be numerous different treatments required depending on the underlying pathology.

    I'm very happy for you that you appear to be at least in remission and acknowledge that your rigorous research and consequent treatment regime may well have played a part in this, but it may not work for all of us. I appreciate the fact that you take the time to share the info with us.

    I hope that your improved health continues.
     
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  11. Valentijn

    Valentijn Activity Level: 3

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    2-day CPET?
     
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  12. Abha

    Abha Abha

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    This may be the link MeSci that you were looking for(I now believe it is relevant in my illness too)....

    http://forums.phoenixrising.me/inde...0-cases-of-chronic-fatigue.30339/#post-463846
     
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  13. Freddd

    Freddd Senior Member

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    "There is no evidence at all that folks who need to take MeCbl and AdoCbl to heal ever re-establish the B12 system to how it was before the deficiency and all the experience is to the contrary"

    I can't speak about any other vitamin in this way. It has the most complicated system all the way around for absorption, distribution, purification, excretion and reclamation. . As regards b12 I know of no one who has had these illnesses in many variations and needed b12 who was able go back to the way it was before. By the way when was "before"? I have no idea of how many variations are covered in that ME/CFS/FMS deceptive simplicity.

    Pragmatically determined many of us appear to have several characteristics. One of them is that I and many others appear to have a slow transfer of tissue potassium (major storage) to serum potassium (temporary quick small access buffer). Many of us appear to have a specific need for one kind of carnitine with vitamin like necessity. There is substantial evidence that some people must have a specific carnitine since their body can't synthesize it from the amino acids. And then there are the well known folate processing errors in multiple variations. These 3 items appear present in many of us. All of these appear to be present from birth via genetic polymorphisms. It appears that these sometimes affect things especially under stress. I had some symptoms from early childhood, along with my children with similar nutritional needs. We all had allergies, and asthma, and frequent streps, (pneumonia(s), me and one daughter most affected) and "growing pains" (linked to future FMS in studies). I have lots of memories of waking up screaming from the now familiar low potassium leg spasms. I had no "before". In any case none of us could have tried a 5 star MeCbl or AdoCbl prior to 1998 at earliest and methylfolate until about 8 years ago. They were not available.

    Do you know about combinations and permutations? How many orders can 30 significant nutrients be arranged in with practical effects? Do you know any other "protocol" in which order is important and is something to be solved? The Active B12 Protocol or whatever it should be called is not like any other protocol. It doesn't say take 500mg 3x per day for 10 days or anything. Instead it is find the "most limiting factor" 10 to 20 times in a row. One has to learn to follow the clues. It is more a game of skill than a "protocol". That has been a major problem in understanding from the beginning. Everybody wanted specific doses and specific ratios, not titrate to equilibrium. Then find the next most limiting factor, titrate that and be prepared that the previously titrated items may need to be adjusted. More than once people have commented to me "that's an awful lot of work". Yes it is. As I have said more than once, dying would have been easier.

    Over the past 10 years I have mapped 2 major pathways and have pieces of several more. It can be looked at as series of predictions, first of what nutrients may be involved, second that there will be responses to the nutrients, that these can be balanced out and additional layers of nutrients added in an approximately responsive manner.. People without theses generally responsive symptoms don't have responses to the nutrients. "Response" is just that, a response. How a person interprets it or what they do with it is a different matter. If they react to the response in some ways, sometimes it is towards healing and sometimes it isn't. Then there are additional nutritional factors, that if added in the needed order give near immediate responses. Then there are all the complications of the comorbidities which are made up of all sorts of things with no specific suggestions. How well a person distinguishes things that can be corrected, ie low potassium and methylfolate, low zinc, low this and low that an too much of x and y. This is complicated and a persons success can be dependent on their ability to figure it out. There are people who make choices that don't work, they may be in a situation with no solution. Then there are folks here looking for something that are not even drawing from the same set of symptoms.

    The FMS/CFS I figured out and planned it step by step. Each step in turn worked because it was a most limiting factor at that stage. That CHF healed was not planned. I had no idea it was related. It wasn't until I had peeled back about 10 layers of symptoms that edema was exposed as a very specific symptom of methylfolate insufficiency.

    The symptoms originating from partial methylation block, methyltrap and partial ATP block can are normally responsive those items whose lack causes the symptoms. Maybe any given person can or can't figure out what to do. Left to their own devices a few figure it out but it requires a different thinking. With some coaching and suggestions and questions some more people can figure it out. Quite a few more figure it out and have good to excellent results, able to go back to a normal life, back to work and live their life as the memory of the years in hell fade. There are stages of acceptance of chronic disease just as there are to a deadly disease. Some people make these changes and have difficult getting back to a non chronically ill mindset when things change. Family can be problem. My wife wasn't happy that I was feeling a lot better but had no more capacity after a year as no rehab had taken place yet. My family had me in the disabled box and ignored me and all it did was cause problems when I tried to come out and participate again in family life and decisions. She watched me decline for 30 years had been resolved to waiting for me to die, and then I didn't. She divorced me. The more I got out of the box the worse the relationship got. It would have been easier to die. I am enjoying my bonus life which I never planned for or expected.

    Some people are going to heal and some are not. Sometimes of the differences are visible in the symptoms and sometimes they are not. I can be a cheerleader saying "Come on, you can do it" like any coach. Part of the problem is brainfog and all the cognitive deficits and changes, mood and personality changes induced by these deficiencies. Some sizable percentage of the symptoms are neuropsyc. Stirring those around can take an unpleasant year or more of daily change in them to come back to an approximation of ones former self. People have to decide for themselves if that is worth it. I'm a very different person than I was 30 years ago

    Nothing applies to everybody. The people who match up to the pathway patterns found can do pretty well and many of them have a life again and go back to work and never say a word on the board. Others have insurmountable problems. I've worked on solving my problem for 35 years. After a dozen or more hypothesis on the way, I got down to partial methylation block, methyltrap and partial ATP block. I fixed those and got better. The cost was high. The old life died and I accepted a different one but this isn't the place to go deeply into esoteric philosophy. Hopefully others can take advantage of what I learned and get themselves out of the mystery disease. I found a corruption of research, of thinking of data that got us into this hole in the first place. An ounce of prevention is worth a truckload of nutritional supplements. There may have been a point in both of our lives where a good diet may have prevented any large problem or there may not have been. Eating that "before" diet is what we all got sick on. It's worse now with more folic acid/CyCbl contaminated foods. I got sick twice as much each year immediately following starting to consume folic acid and CyCbl daily. Infants get it in formula now. Teens are as sick with FMS/CFS a 15 as I was at 30. It would have killed me quite possibly. Research done about 10 years ago found beef liver now has 5% of the B12 content of beef liver of 1950. With folic acid and CyCbl added to the food supply it is far more difficult to get the real thing from food.

    I have been kicked off a couple of boards for saying that FMS/CFS/ME could be recovered from. Those running the boards had their incurable disease thing going and didn't want me upsetting their apple cart.

    What I said, put more clearly, was that if I'm relying on supplements to maintain or improve my health, rather than just eating a balanced diet to fulfill my nutritional requirements as I was pre-illness, then I'm not cured. I would consider it perhaps a treatment or partial treatment or management.

    Yes, I have managed the predispositions to a set of deficiencies and in doing so no longer have CFS/FMS/ME. I still have SACD and the results of various injuries. And even worse I'm aging at 1 year per 365 days. Now where is that fountain of youth?
     
  14. Freddd

    Freddd Senior Member

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    Abha and MeSci,

    Interesting. I certainly had several brain injuries. By the time of the car wreck in 1972, I had three concussions prior to that and an unknown injury, probably the worst, at 4. That was the one I recovered memory of about 8 years ago. I hit the windshield head first and was possibly unconscious and have no memories until Sunday afternoon, and the accident happened on a school day. I had headaches for decades from that. The problem is I was already sick. The injures in 1972 appeared to trigger FMS starting up in earnest several years later. I have a lifetime detailed symptom history by decade or less in places. It fits in as a "tipping point" to a deficient metastable position after exhausting some resources I couldn't replace. Then the CFS came on with a nasty entero virus my wife and lots of people locally all had at the same time in 1987. It was also coincident with the seven year vegetarian crash. My wife got better in 3 months, I got worse until May 21, 2003 when I took the first MeCbl. In one hour it was clear my life was changed.

    While these injuries certainly added strain to the system, they didn't cause my folate problem, need for carnitine and need for both natural B12s and an inability to get the b12 into my brain. I was diagnosed with delayed speech because of delayed myelination before that early injury. Delayed myelination is a known b12 deficiency problem, now, but not in 1951.

    So while the injuries I'm sure did do damage, and I was perhaps more sensitive to the damage because of the deficiencies, they really don't appear to have caused my problems though they may have increased them.
     
    Last edited: Aug 5, 2014
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  15. Freddd

    Freddd Senior Member

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    What is a 2-day CPET?
     
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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  17. brenda

    brenda Senior Member

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    @Freddd

    There are some here, well me for a start who believes that a lot of chronic illnesses can be put into remission, which means to me that their genetic defects can be just about silenced and that is what l am aiming for, as much as is possible for me at my age and health history.

    Clean meaning organic, non GMO, non supplemented highly nutritious food is my first line of defence added to rifing for pathogens, frankincense oil for DNA repair and pure water are my tools along with not touching medications which l consider harmful. If l was having to keep my system pumped up with the supplements you are taking, apart from the cost which would be prohibitive for me, l could never think that l was healed, and would rather dread getting older and ending up taking more. I have to wonder what medications you are on and how much filler etc you are taking in from all of the supplements and l recall you not having much against magnesium stearate when l would never touch that.
     
    Last edited by a moderator: Aug 6, 2014
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    One point that I would query, @Freddd, is where you say "To me, it seems obvious that if the symptoms are gone and the medications being taken for the symptoms, discontinued, that a person has recovered."

    Yet you are still taking a lot of supplements. I think that there is a very blurred line between supplements and medications. Many supplements have the same properties as some medications. I pointed out in another thread today, for example, where people were discussing pharmaceutical TNF-alpha inhibitors, that some supplements also do this (e.g. resveratrol and curcumin).
     
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  19. whodathunkit

    whodathunkit Senior Member

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    @brenda: apparently magnesium stearate is not affecting Freddd adversely. Me, either. I'm doing quite well on Freddd's protocol and think it's one of the best (if not *the* best) things I've ever tried. It's not been without ups and downs, but overall it's done me as much good as anything I've ever tried. And I've tried pretty much everything. Including Rife. I own a F165 frequency generator and a SG-1 scalar device. I'd like to try a plasma tube to see if I get better results but have been low on funds and time to tinker.

    FWIW, I don't see too much of Freddd insisting his way is the only way.

    IMO nutritional supplements aren't the same thing as pharmaceuticals, and the two shouldn't be conflated. In many cases nutritional supplements are just concentrated forms of the food we eat, providing a level of nutrients we could only get by ingesting much more food than is possible, either for lack of time or for lack of space (stomach room). Therefore, a "cure" effected by taking nutritional supplements can and should be treated much differently than an absence of symptoms brought about by taking synthetic substances (i.e. lab created, molecularly modified pharmaceuticals).
     
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  20. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi MeSci,

    Let's change contexts a little. Pretend you are sitting there with databases with hundreds of thousands of members medical records. And you are looking for patients that have done well and providers that perform better than average. One looks at secondary measures. A decrease in symptoms, medications (say pharmacy bill for chronic drugs goes from $1500/month to $100/month) and see what they were being given for. We know of course what is typical of pharmacy by diagnosis codes. Then there is discontinuance of regular testing and frequent appointments. Pragmatically speaking, the people then have usually recovered substantially. Do you know how truly rare that is? When most of a persons meds are discontinued it's because something had happened. We often scheduled chart reviews and even member interviews to find out. We worked for the trustees of the plan for the good of the members. We reviewed the providers of all sorts and the insurers themselves. So we were also examining all the rate making information of the insurance company underwriting the plan and usually get at least 3 competing bids from those companies we have invited to bid.. We were at the top of the data chain. The trustees to whom we reported had no idea what was going on which was why we were hired. We wanted to get rid of ineffective providers from the panel. We wanted to encourage the effective docs to stay and use them for second opinions. So lots of things get done to protect our supervised members and the plan itself from abuse.

    Let's consider those chronic conditions that suddenly show all the signs of no longer being present. It is terribly rare. In MS, going in remission (partial) doesn't cut medication costs or doctor visits or lab tests. It virtually NEVER happens with (P)SNP, Parkinson's, ALS. Spontaneous recovery from well established CFS/FMS/ME is rare as hens teeth. And as all of us know 99% of doctors out there would poo-poo the idea that vitamins and other supplements could do it or have any real effect.

    Yes, I'm still taking a lot of supplements. Taking MeCbl of the Deadlock Quartet plus others got rid of lifelong depression 11 years ago. That is very different than taking an SSRI to correct 1 result. The nutrients correct over 600 broken biological reactions, impossible to treat each one with a separate medication. At this stage, enhancing nutrition and repairing the cause of hundreds of malfunctions is both the lowest level and most effective I can do. There is no way to correct all the genes which we don't even know yet. Maybe in 100 years that will be doable. But for me and my children and my grandchildren, if I want them to have a normal and healthy life, they have to have modest doses of the natural vitamins. They don't have damage yet so that doesn't have to be overcome. I'm betting my life and that of my entire family. I take this very seriously.

    The ME/CFS/FMS symptoms went away by triage layers. My metabolism normalized. I shed 85 pounds of water in two batches, lost 40-50 pounds of fat and grew 50 pounds of muscles, returning to normal. I had major healing. The discolored rough textured skin and coarsened hair of RSD has been replaced by healthy normal skin. My skin is literally the best it has ever been in my life (age considered). Hair has come back to neuropathic slick areas. These are all cells growing as they are supposed to instead of abnormally. My doctor has said "I've never seen anybody else come back from so far over the edge". I have healed from being 12 (10 years ago) years into congestive heart failure which has an 80% mortality in the first 10 years. My body has normalized. It took me 9 years to reach the peak of healing and normalization. It's far more than a few symptoms going away. 175 or so have gone away and stayed away, even with a couple of induced SACD relapses, and short bouts of paradoxical folate deficiency.

    So, one has a rare event that was consciously and specifically caused through the exercise of hypothesis and trial and revised hypothesis in 35 years of private research. Is that a meaningless accident or the solving of a very complicated problem? Nutrients are not medications though herbs often are. I found that when one has a rare event, study it to see what has been done right. In 95% medicine all those like me who are a rare recovery are ignored as outside the 2 standard deviations or even 3 standard deviations.

    I'm not bothered by having to take supplements, even a lot of them. The nutrients are not available in foods in adequate amount for my personal needs, which is like many here.

    Let's go on 5 mile walk with 2000 feet of vertical each way and discuss it. It would make a pleasant outing. Sometimes demonstration is more effective than words. There are no drugs suppressing symptoms that can allow this.
     
    Indigophoton, whodathunkit and ahmo like this.

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