The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
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Progress??? from sick to hyper and now to depressed??? is this normal???

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by place, May 13, 2012.

  1. place

    place Be Strong!

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    Hello,
    I am on week 5/6 of Freddd's protocol. At first I went through a slug faze then got better, almost overly hyper/ to much giggiling this past week. Now I am depressed the past three days?

    Is this normal to go up, down and even sideways?

    Thanks a million,
    Place
     
  2. place

    place Be Strong!

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    Never mind! I took 500 mg of Potassium and felt better. I'm up to 8mg of mb12 and I thought that 1000 would be enough during the day. I stand corrected. I will keep the ratio of a 2-1 potassium-mb12.
     
  3. Freddd

    Freddd Senior Member

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    Hi Place,

    THERE IS NO CORRECT RATIO per se. When healing gets switched on which can happen with 50mcg of absorbed mb12 (a quarter of A 1MG MB12 5 STAR held for 45-120+ minutes) potassium is usually needed between 2000 and 3000mg a day and metafolin typically is needed between 2400mcg and 30,000mcg depending upon severity and types of paradoxical folate deficiency and depending upon various other factors.

    As the neurology starts healing and correcting moods and personality can be all over the place and all sorts of old stuff that is unprocessed for years can come up. Mood can be very volitile, in additon to potassium and Metafolin changes themselves. A lot depends upon the areas of the brain affected.
     
  4. peggy-sue

    peggy-sue

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    I'm not on any protocol, but I get hyper and ecstatically happy sometimes - followed by a few days of rebound depression.
    It's just another ME_thing for me. I do have normal clinical depression, (reaction to 4.5 years of disease) treated by citalopram for the last 5 years.
    This has nothing to do with these bouts of cheerfulness/depression.
     
  5. Freddd

    Freddd Senior Member

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    Hi Peggy-sue,

    The active b12 protocol has major effectiveness on depression. I was depressed all my life until I started it. The mood swings are typical of interacting deficiencies in all this. You don't have to keep the ME if you don't want to.
     
  6. peggy-sue

    peggy-sue

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    Hi Freddd,
    I take a sublingual Vit B12 supplement every day - it has no effect at all on these not-very-common symptoms of cheerfulness/depression. I don't know anything about your protocol - we don't have any protocols available here. I just muddle along with a few supplements I've found out about myself.

    I'm really not at all sure what you mean by; "You don't have to keep the ME if you don't want to." :confused:
    It sounds to me very like the things said by the "biopsychosocial model" followers and quacks out to make a quick buck..... not wishing to be rude!
     
  7. Freddd

    Freddd Senior Member

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    Hi Peggy-sue,

    The mind is a key player in this game we are all playing of YOU BET YOUR LIFE. The semantics we think with, the theories and hypothesis we use, the items we consider and even how one does things and interprets the results can determine ones sucess in healing ME or for that matter a sucessful business.How people set their identity can make a difference. I choose to identify myself as "b12 deficient". A deficiency can be fixed. I quite purposefully and consciously refused to identify myself as being/having "an incurable disease". When I didn't WANT to do something, I said so. I didn't spread the disorder into all parts of my life by saying "I feel too sick to do xxx" when I really meant "I didn't want to do xxx". I have watched many people make their "home" in the chronic illness and spread it's influence in their life becasue they were not being honest with themselves or others about "want" versus "can't". Maybe "biopsychosocial model" is what you would call the summation of mental models, semantics, memes etc people use to think and understand. I've never heard the term before. The only quacks I'm aware of in all this are the lactose intolerant eating too much dairy. Boy does that make for a lot of quackers.

    Most all of the symptoms of ME are frequently responsive to various specific supplements taken in various specific ways. When I started on this path 9 years ago I was horribly sick and quite untreatable as the docs demonstrated over and over, if you were to ask any of the docs. During the two decades of severe illness I was kicked out of practices for insisting that there was REALLY something physical or biochemical wrong., called a "liar" becasue I had "too many symptoms to be believable", called an alcoholic becasue of test results (was essentially a non-drinker), was told my test results were "in range", diagnosed with "yuppie flu" and "an imaginary woman's disease", "conversion disorder" etc. I had essentially all thye symptoms of ME, FMS, CFS and a lot left over. Because the various diagnsosis put me into the "despised patient" category I got called names and lots of drugs pushed at me, a few of which made life more endurable but didn't actually do any healing and many with harmful effects. None of this is unusual for those of us with ME/CFS/FMS. I was treated badly for 20 years. A female neurologist asked me if I really wanted her to dignose me with FMS, and "imaginary womans disease that would only cause doctors to treat you badly". I already had that fatal diagnosis and was seeing her for EMS testing anyway. She confirmed the diagnosis again. Part of my consulting and data anaylsis had to do with patient satisfaction, fraud (by doc) and other problems by the provider, and we routinely got rid of the 1% worst providers from the HMO orr PPO each year. Some of those docs would not have survived in a managed care situation where there was a layer of people watching out for the patient's interests and working for the patient via the plan trustees who hired us.

    With that mindset, that CFS/FMS was some sort of faker's disease there was hardly a doc out there that was going to expend the effort to figure it out. Those that tried were condemned and villified by their colleagues. I set out very systematically to solve my problem. It turned out to be multiple layers of problems. One of the first things I hit was that methylb12 wasn't predictable in it's effects. So that was the first thing I set out to do. It turned out to be quite complicated. I ended up posting a list of about a dozen reasons why b12/folate therapies don't work. The only way I solved that was by working through each and every way I found for it not to work in trying to make it work. There are no guarantees I've coached more than 1000 people through that list testing in effect each of the reasons. An attitude of being willing to experiment to find what works for them and to keep trying is more likely to succeed. A person willing to let go of interpretations and learn new ones is more likely to succeed. The definition of ME has lots of specifics. If a person removes 2/3 of symptoms from consideration by healing that, the residual symptoms won't be ME. It it is is the next layer of the problem to solve, a co-morbidity of some kind. So, when a person learns to recognize a set of symptoms as low potassium they can have relief in hours instead of sufferring with "detox" for years. Or maybe a different set of symptoms has to be recognized as paradoxical folate deficiency or folate inadequacy instrtead of "detox" to get past that layer to the next. Those that call it "detox" rarely figure it out becasue it stops right there and often gets worse each time they try until they do something else, thereby avoiding the start of healing and the things that might work. It's their choice. No doubt about it, complicated and difficult to figure out and "counterintuitive" for many. On the other hand it appears quite predictable in following certain road signs. People who have healing startup with low potassium and increased metafolin need tend to have considerable healing and rediuction of symptoms over time. There are lots of roadblocks along the way such as hypersensitivity, a critical cofactor that isn't one of the major ones can be very subtle. There are of course comorbidities well outside the definitions of ME, FMS and CFS for which the various nutrients will likely do nothing at all except uncover the new set of symtpoms. I've just spent the last 40 days at about 2 hours per day of coaching somebody through the startup and a very delicate and difficult titration. And I have bought and sent 2 batches of vitamins as she is on disability and has no money. My internist has said, like many others, "It's too complicated and difficult for most people to get well". Complicated and difficult isn't impossible. Besides, as the Seabees say "The difficult we do immediately, the impossible takes a little longer". And that says a lot about attitude. The we had a conversation on the language of healthcare in which I've been a consultant and systems analyst sincer 1980 or thereabouts discussing the problem in technical terms which includes lack of compliance, bascially not following the schedule or plan or whatever. It takes a determined and self responsible person (I was deparate and dying, very determined) to work through a dozen reasons that a b12 therapy doesn't work and then through all the rest of the roadblocks.

    ME, like the rest of these illnesses in this family, appears to be a man-made deficiency disease. It can most likely be described in terms of maybe 6-8 overlapping deficiencies. I used to have the many symptoms of ME but was never diagnosed with such since it isn't an official recognized USA diagnosis and not current before 2003 when I stopped looking for diagnosis since I found the beginnig of the solution. It took a while. I fpound a lot of building blocks. http://forums.phoenixrising.me/index.php?threads/building-blocks-of-a-disorder.17452/

    I'm sure there are more. I haven't begun to explore the Vit D role yet that is critical for some, or zinc or any number of other things. The descriptions are not complete by a long shot. The descriptions are ALL pragmatic, based on what actually has worked for quite a few people. The "hypothecized" by one of the subsets is not yet being able to distinguish the distinguishing features, not a lack of responding people. If I were consulting for money I would offer a satisfaction guaranteed or your money back. Also, when consulting for individuals I don't charge more than their hourly rate. Consulting for an HMO my fees would reflect effectiveness based on lowered costs or other agreed criteria in the specifc area based on the group. I can coach a person through solving the problems but I can't solve the problems for them as that requires doing the trials required to solve their problems and nobody can do that but the person involved. I can help them observe and think about things. Based on my personal experience and coaching a lot of people through these things I would say that if the diagnsosis of ME, CFS, FMS are correct then the disorders are largely correctable if understood correctly and if the person has the persistance and willingness to do many trials, some of them distinctly unpleasant, to pin down all their variations. Methylation for instance can be reliably started in a few days by most people whose next challange is to recognize the flags of healing when they pop up. I have come across numerous people on this board that appear to have been misdiagnosed and who don't have the same symtpoms sets. I've even been asked why I didn't comment by specific people on their sittuation and it is because I don't recognize it as anything that might respond to these supplements. So good luck.
     
  8. Freddd

    Freddd Senior Member

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    Hi peggy-sue,

    There are two protocols detailed on the methylation menu pinned at the top. As you are already on the mb12 I would be glad to help you through the Active b12 protocol and make the mb12 and cofactors effective for you. Where are you from? This new software isn't displaying a persons whereabouts. It makes know what they have available easier as the UK has a different set of problems from the USA etc. I take it then from what you say that you are in the muddle of woad. In any case read up on the active protocol. There is a list of symptoms that if you would mark the ones you have in a red "yes" it will be easier to see what you have. I'm quite interested in seeing the distinctions that make ME where it is diagnosed. Also I have a key to the symptoms list that indicates which supplements might be helpful based on the patterns of symptoms.
     
  9. peggy-sue

    peggy-sue

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    I will have a good look, Freddd - I've been experimenting with supplements on my own, using Myhill's and Hummingbird's guides as my starting point. Basically, I'm on my own - and yes, in the muddle of woad. I have no diagnosis and a useless gp who isn't interested and thinks it's some sort of freudian conversion/functional somatisation - dualistic stuff which I can't thole - I do not have a "mind" I have a brain. The "mind" is an illusion of concsiousness. All studies into the "mind" only study the parts of the brain subserved by language. The whole enterprise of "Cognitive Science" needs binned - it's about as "scientific" as Christian Science.

    We have several quacks over here postulating cures. Lighting therapy, Mickel therapy, Reverse Therapy, "amydala retraining", "NLP"; all very expensive, and they all blame you if it fails. Most of them have some sort of mantra about "I'm not going to "do" ME any more." Which is why your comment rang alarm bells for me!
    And of course, the stuff available in England on the NHS, GET and CBT.
     
  10. taniaaust1

    taniaaust1

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    Fredd. Vit D is certainly playing some role in all this. Ive had very low 25-hydroxy vit D at 31 (normal range 60-160) ...while my 1-25 dihydroxy D has always been in middle of the normal range. This day issue has been there my whole illness and my deficiency has gone even lower when I took standard daily 2000IU supplementation amounts of D3.

    Last year after 2 previous abnormal EEGs (showing up a common ME abnormality) which were done in other years.. towards the end of last year.. I FINALLY had a normal EEG .. the ME abnormality is now gone. Then a couple of weeks back my sleep suddenly almost fixed itself over night (thou im still on melatonin but I suddenly dont no longer need to take my two other sleep pills).. Then this week.. I just found out my latest 25-hydroxy vit D test has suddenly come good, thou I havent been taking my D supplements (I was really put off of taking them in the past when my levels went lower when I was consistantly taking them.
    So it seems Im heading towards a mend seeing my test results including that D (im doing nothing different.. still mostly housebound and only leaving house for appointments and shopping) are starting to correct themselves.
    Whatever was making my D be down.. just isnt doing so now.

    Two things which have made a difference to me this year are molybdenum (it helped my brain a lot.. I went from not being able to do maths in my head to be able to do it after only 5 days of taking it) and Selenium has had good effects on my body too. When I stop those.. I start going downhill in some ways again. There seems to be a ton of missing pieces to this illness.


    I dont know what to say to that.. yeah deficiencies can be fixed if deficiencies are all ones issue.. there are so many different things thou one could be deficient in.. (I personally doubt my brain would of recovered with something else the way it did with the molybdeum.. that had the same kind of dramatic..but in a completely different way .. to what B12 injections did for me. B12 injections increased my memory, while molybdenum gave me a "working memory" eg able to work out things in head for the first time in years and years. (I still have a lot of other things to experiement with but many things others have tried havent made any difference in me)

    Maybe you made excuses for not doing certain things in your head (refering to what you posted) ..but not all of us are doing that. Some of us when we say we cant.. we actually cant.. to do so, we actually at times end up in hospital completely unable to care for ourselves (unable to walk/stand etc). I dont think that can be called making excuses when people are ringing ambulances cause one has gone and done something one shouldnt have done but wasnt listening to ones body enough at the time, due to to postive thinking etc (that's got me into trouble many a time when I overstep the boundries my body imposes on me..whatever this illness is.. its far more then something just in the mind).

    There seems to be two different types of illness.. those who have an illness they can push throu without getting much worst.. and those who cant without severe consequences. I have a ME/CFS friend who spends a lot of time in bed (where as I spend very little time nowdays in bed).. but if she has to go and do something when she is unwell she is still able to do so.

    She due to how she herself is, didnt understand how I cant push myself till she saw me on the floor unable to get up at all. The reason why that occurred was just cause she'd talked to me about 1 min more then my limit thou I was sitting at the time!!!.. complete jelly legs which wouldnt no matter how hard I tried, they wouldnt hold my body up when I went to stand even supported. We arent all the same. You are sounding like my friend and probably wont understand how some of us get unless you saw it for yourself. Have you ever seen a ME case where the body just wont work?

    Something very neurolgical happens. (I wish I had a third person here a couple of months ago when I having a bad ME episode to film two others attempting to help me to walk to the toilet while my body was spasming out all over the place.. to show you quite neurological ME.. I was almost being dragged by two people as i couldnt walk and couldnt coordinate legs... ) ..its offensive when someone thinks a person thinks we werent trying when things like that happen.

    (that incident was what suddenly had a goverment disability services officer who previously didnt think this illness was real.. believing ME exists.. he was completely shocked what kind of state I was in that day. He was lucky to witness that on his 7-8th home visit as no way can I ever leave my house when like that ,so that was only the second incident that health professionals have ever seen me that bad.. health professions hardly ever get chances to witness bad incidences of this ilness).

    Those comorbid conditions which come in with ME too.. just cause one may be able to get rid of some of the ME symptoms and are left with those.. it dont mean the ME is gone if all those comorbids one got due to it are still there eg POTS, orthostatic hypertension, abnormal low cortisol, low testosterone etc etc(I have a mass of comorbids with the ME.. this illness isnt about tiredness) seem to be part of it all. That D deficiency was part of it.. but now that is suddenly gone for no explainable reason.

    To have a complete theory of this whole illness.. there must be a place in which everything fits. I personally believe no one has the complete answer to ME yet.

    Just cause someone may not have tried your theory, it dont mean they havent tried or dont want to get well.. it probably means they are currently trialing other things right now.
     
  11. peggy-sue

    peggy-sue

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    I do know the difference between;
    not wanting to do something; (I hate emptying the dishwasher and washing machines, but sometimes I know it will cause a black-out if I try.)
    being completely unable to do something (I no longer have the strength to open jars or bottles);
    and being able to do something - but only with serious consequences. (Get my Dad through his final months).

    I don't get fatigue, I don't oversleep. My body suddenly stopped working properly.

    I'm quite aware of a lot of body biochemistry - I know what lactic acid pain is, I know my body has gone into anaerobic metabolism when it shouldn't. When I black out, I know my blood pressure has gone down before I loose consciousness. When I got restless legs and cramps, I knew I needed magnesium (with molecular equivalent of Calcium to balance any leaching from bones).

    However, I've never had any of the appropriate tests.

    I do take Vit D - it comes as standard in my Calcium.

    My personal belief about ME is that it's the mitochondria not managing to convert ADP back to ATP quickly enough.
    Every single cell in the body depends on this, thus every system does too.
    It's the simplest explanation for everything.
     
  12. place

    place Be Strong!

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    Peggy- your symptoms sound just like mine! You even black out when your blood pressure has gone down! I get so embarissed when that happens. I drink water like a fiend just to avoid this.

    you stated "I get hyper and ecstatically happy sometimes - followed by a few days of rebound depression."

    I get hyper and ecstatically happy the day before I'm going to be sick,fibro/sinus/flu. No one else has ever had that issue or and explanation. I think it is an important clue as it is dealing with ATP.
     
  13. place

    place Be Strong!

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    Also... the Active 12b protocol has helped with depression, greatly.
     
  14. Freddd

    Freddd Senior Member

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    HI Peggy Sue,

    I had lactic acid burn in my muscles all over my body for 16 years. It's generally very easy to correct in perhaps a week to 10 days. Of course it depends upon what theory one applies ...

    In any case i f you would like to try a different hypothesis, doing things in a way that worked for me and many many others I would be willing to coach your through the startup and getting stabilized. It can be more than a little tricky. The choices are yours. You can choose to let me try and see if I am essentially correct enough for you to heal or not. Or you can try to follow it from all the various postings, the basics, the potassium and Metafolin decision tree for healing startup, etc.

    I had a good day today. I trimmed a tree and cut up the branches. I dug composted manure into a section of garden and did some planting. I spent 5 hours doing physical work today and in the next few weeks I have four decks to stain/paint, an irrigation system to set up, more trees to prune, 2 swamp coolers to get ready for summer, sealing the foundation, painting the stucco and things like that. I couldn't have done one days worth of this in an entire summer 9 years ago. I'm cured. Oh yes, my muscles had atrophied in the years of disuse and deficiency. My thigh muscles 9 years ago at the top of my thigh was as thick as my thumb. Today it is 1.7 times the width of my palm. It took 3 years to come up with the combination of all the deficiencies to get my muscles growing and/or repairing again after decades of not.

    Not everybody does know the difference between can't and won't. It's easier to go along with it.. My wife would feed me the line, "You don't feel well enough to go to xxx?" The easy way out would to be agree that I didn't feel well enough instead of getting into difficult conversations as to why I don't want to "xxx" with my wife." I've watched others progressively extend the hold the illness has on them until they really have nothing left that they can allow themselves without looking like they have been lying (misleading, misdirecting, etc) to themselves and those around them. I've watched people do this to themselves and I have watched them come out of it. It's not something they set themselves to do. It's usually a subtle slide over years that they hardly notice. Have you ever tried to loose weight and suddenly "You are not eating well dear, you don't look so good, have some more food and a big dessert," from so many friends and family members?
     
  15. peggy-sue

    peggy-sue

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    Lactic acid burn only happens in specific situations - and depends on how well I'm doing at the time.
    Sometimes I can get upstairs without stopping to let the burn ease before carrying on, sometimes I don't.
    It's not an "all over" thing - it's quite specific to muscles being asked to do more than they have the energy to do. It's completely dependant on what I have just done and it goes fairly quickly.

    It's really not sounding at all as if whatever you have, is the same as whatever it is I have.

    And I don't like being told it's "all my own choice to stay ill". It's not.
     
  16. Freddd

    Freddd Senior Member

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    Hi peggy-sue,

    The question is can a well applied active b12 protocol correct your problems. Interrmittant lactoiv acid burn is certainoy far more common and "normal" than constant toal lactiv acid burn. The one indicates a larger percentage of mitochoindria not working, worse deficiencies. However, they may very well both response to the same treatment. However to find out if you could in fact recover, correcting the lactic acid burn early on most likely, you would have to be willing to give it a fair trial which means doing it in the ways that could work rather than the ways that predictably won't/don't work. The choice is yours. If you would like coaching through the active b12 startup I am willing to give you a helping hand and help you figure out what to do at each junction of events to get you started and hopefully healing. That too is your choice, I can only offer. Doing nothing at all or anything else is also a choice. People make choices all the time, concious and unconscious.
     

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