Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1
The 10th Invest in ME International ME Conference (IIMEC10) was held, as usual, in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 29th, 2015.
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B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. Freddd

    Freddd Senior Member

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    Hi Rich,

    It's a lot more complicated than that. The very definition of b12 deficiency is severely faulty. Most of the definition of b12 deficiency in the USA and UK revolve around Pernicious Anemia. It has absolutely nothing to do with a person having symptoms corectable by b12 of one form or another. In the USA a person can literally be dying or severely disabled by b12 deficiencies and yet not test as b12 deficient. So that diagnosis of exclusion of b12 deficiency has to do with test results indicating deficiency, not whether the person has symtoms that correct with b12.

    For instance in a study of methylb12 as treatment for peripheral neuropathy, people were accepted into the study based on symptoms. Of those who responded to methylb12, 63% were not deficient according to any test results; serum b12, uMMA or Hcy and would have been excluded from a study using test results as entry criteria. The mean serum b12 level in responsive people prior to treatment was over 700pg/ml with some exceeding 1500pg/ml.

    Further, other research has indicated that those with CFS and FMS have a cerebral spinal fluid cobalamin level compared to blood serum level of 25% of the healthy controls. Except in studies, nobody has cerebral spinal fluid drawn to test for cobalamins. Further there is no definition for anybody of what constitutes "low" CSF cobalamin levels.

    The tests as currently applied only cause a few percent of those who have symptoms that are responsive to b12s to be diagnosed as b12 deficient. In Japan for instance anything below 550pg/ml is "low". Their "low" flag is designed to catch more of the neurological symptoms than low being set at 170pg/ml. Even 550pg/ml isn't high enough to prevent neurological symptoms in most people.

    With testing standards like these no wonder CFS/FMS is mysterious.
     
    BluebirdFeather likes this.
  2. keenly

    keenly Senior Member

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    fatigue is a SYMPTOM; NOT A DIAGNOSIS
    The solution is to find out the CAUSE.
     
  3. keenly

    keenly Senior Member

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    NONSENSE

    if you have had fatigue for months or years YOU HAVE CHRONIC FATIGUE; BOTTOM LINE!

    That's not a disease; it's a SYMPTOM!!!!!!!!!!!!!
     
  4. keenly

    keenly Senior Member

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    hello fred

    I have got by translocater protein and DNA adduct studies back.
    I have mitochondrial membrane binding of proteins stemming from a leaky gut allowing them to pass through.
    I also have vinyl chloride(from plastics) on my DNA on the creatine kinase gene as well as copper complex.
    I also have moderate levels of creatine phoshate and the only way that could get there is by the muscles leaking it meaning i have extensive muscle damage.

    I have poor antioxidant status which means i can't detoxify lipid peroxides and so these get stuck onto mitochondrial membranes and DNA.

    I have been recommended to take glutathione.

    can i have your thoughts please?

    like i said CFS is a SYMPTOM and there are lots of things going wrong in the body; i have identified several thus far.

    cheers
    paul
     
  5. Freddd

    Freddd Senior Member

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    Hi Paul,

    The mb12 and methyfolate generates glutathione, but not in a quantity so as to disable themselves, the active b12s and folate. My suggestion is to allow the active b12s and floate to normalize the body for several months, during which an awful lot of healing can occur and re-evaluate then. This evaluation is in the midst of all sorts of things being broken down. The tests confirm what you already knew; that things are broken. The epithelial and endothelial tissue damages can be caused by the b12 and folate deficiencies themselves. Thats what those deficiencies do is damage all those tissues. Give them some time. Right now you have started taking action but not gone long enough for that action to show up. Making more changes may be swinging at phantoms that are already changing and may interfer.

    B12 deficiency directly damages the muscles, GI lining, veins, heart and arteries lining, skin, mitochondria, neurology, blood, bladder, and all other tissues in the body.
     
  6. keenly

    keenly Senior Member

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    Thanks fred. The problems is the CAUSE of the deficiencies in the first place is fungal and bacterial infections; they REQUIRE b12 and other nutrients. I had digestive issues prior to any fatigue, neurological ones and i still have them. The toxins released such as hydrogen sulfide and the alcohols interefere whith mitochondrial function. I really need to address the gut issues and that will mean no antioxidants for a couple of months; it's a difficult situation. I can't stand any AZOLE antifungals; they make my legs swell and cause nervous system problems.

    I suppose sublinguals or injections bypass the gut so yeast, bacteria can;t feed upon them in the intestines but the added sugar is an issue. I don't understand why there is no injectable DIBENCOZIDE? Couldn;t a private lab make that?

    I have some methylb12 in fridge(in tinfoil) but am currently using the jarrow one(5000mcg). I am going to get some more methylb12 liquid inject and keep it for future once i have used the subs; one injection with a small insulin needle gives me 2500mcg.
     
  7. winston

    winston Senior Member

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    B12

    Hi Fredd, I am so disappointed! I had to get off the B12s I was detoxing so bad. It all started on Wednesday 10-7-09 I upped the adb12 to 2 pills and on Thursday 10-8-09 I upped the adb12 to 3 pills. I had been on 3 methylb12 for around a week with no problem. The detoxing started on Thursday 10-08-9 with nausea and dizziness and feeling really sick. Last Thursday went down to 1 adb12 and 1 methylb12. The detoxing continued severely. Stopped both adb12 & methylb12 on Saturday and it improved some. I also stopped the folate and am still taking 1 B-right, might stop that too, took it last night and the nausea started up again.

    What went wrong? I was doing so well, all my symptoms were improving until I upped the dose. Does it sound like I have a B12 deficiency? I know I have a problem with toxins, does this B12 protocol actually correct the mythalation problem? Right now I don't know what I am going to do except let my body cool down from detoxing. What advise can you give me?

    Lena
     
  8. Dreambirdie

    Dreambirdie work in progress

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    Hi Lena--

    Welcome to the club. Several of us (me, Sushi, Lisa, Klutzo) have had severe detox induced by the B12. I am finding that lower doses work MUCH better for me, and am trying to figure out how to manage my doses without inflicting severe detox upon myself.

    It's a tricky thing that takes time to work out. Trust your body and you'll eventually find a way.
     
  9. markmc2000

    markmc2000 Guest

    Nerve pain helped by b12, and caused by bacteria.

    INteresting statment about the bacteria causing the problems, Keenly. I got a bacterial infection of the urinary tract one time. I treated it with antibiotics and it seemed to go away. However, Now I feel a burning pain in the urinary tract when I get stressed or do something else to aggravivate it. So it feels like I have nerve damage due to the urinary tract infection maybe? or what you describe as b12 deficiencies?

    When the urinary tract pain comes back, it is accompanied by other types of nerve pain. Like burning in the feet.

    By the way it seems as though my nerve pain is aggravated by the NAC like freddd describes. I get dry hair, hair falling out, pain in urinary tract, pain in feet. Stoping the NAC and adding methyl b-12 seems to help these deficiencies/nerve pains or whatever they are go away. However, the NAC helps my mood and gives me more clear headed thinking while it lasts, then I end up with depleted b12 If I continue to long with the NAC I guess.

    Mark
     
  10. richvank

    richvank Senior Member

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    My interpretation of Dr. Peterson's comment

    Hi, all.

    In interpreting Dr. Peterson's comment about B12 or iron deficiency in relation to CFS, I did not mean to suggest that I agreed with him. Kim asked what he meant, and I was trying to explain what I think he meant, from his point of view.

    In fact, I don't think that the Fukuda et al. case definition for CFS fits this disorder very well, and I think that view is shared by many researchers as well as many patients.

    I have analyzed some cases in which I am quite sure that the people have CFS, but they also had either B12 deficiency or iron deficiency.

    The problem in defining CFS was that they didn't have a good marker for it, so they had to define it by exclusion of other disorders. In doing so, they had to decide which other disorders would rule out having CFS. That wasn't easy to do accurately, and I think that has led to the type of problem that has been raised here.

    I'm hopeful that we will have definitive markers for CFS soon. My candidate for a marker is a partial block in the methylation cycle, as defined by SAMe and SAH levels and their ratio, as can be measured with the Vitamin Diagnostics methylation pathways panel. I think that defines CFS, but it will take some good studies to determine whether that's true.

    And I agree with freddd that it isn't easy to diagnose functional B12 deficiency.

    Best regards,

    Rich
     
  11. Freddd

    Freddd Senior Member

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    Hi Lena,

    I think it's more important to get a good balance of things going than a lot of one thing like Adb12. A single tablet of Adb12 and of Mb12 plus b-complex and all the basics and so on gives the body a chance to heal many things. The higer doses can wait until you see what doesn't work at lower ones. Balance is important. The balance between adb12 and mb12 plays a substantial but not easily discernable or well documented or explored role. The exact balance a person needs is not eaily arrived at so we try for an approximate balance. Most people find between 1 adb12 per day and 1 per week perfectly suitable when they are taking the mb12, methylfolate and such. Ad b12 doesn't drain from the body as quickly as mb12. Higher doses may be effective in some circumstances but that has to be tried after a balance all the way around is reached or you don't know what you are seeing.
     
  12. Freddd

    Freddd Senior Member

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    Hi Keenly,

    Taking the mb12 sooner rather than later would be best. It is fragile in liquid.


    I don't understand why there is no injectable DIBENCOZIDE? Couldn;t a private lab make that?

    I asked my compounding pharmacy about that. He said that it would be very expensive, partly becasue of no market, and much more fragile than mb12, more of a prepare and immediately use deal. You can order the crystals direct and in the freezer they are stable indefinitely and you can use the crystals sublingually as somebody I know found out by surprise. At christmas he is going to run some injection tests of adb12 so hang on until then and we will be able to tell you more.

    I have found a reasonable compromise to be 5 of the adb12 under the upper lip a couple of hours after a 7.5mg SC mb12 injection. As far as the diffusion gradiant into CSF goes, as far as I can tell "it's all cobalamin" and it does penetrate the CSF as I can tell by specific different effect than the mb12. My hypersensitivity to both varieties of active b12 has some uses.


    Sublingual does entirely bypass intenstinal absorbtion problems whether due to microorganisms, low acid, surgery, lack of IF, inflammation, etc.

    As those same factors may to some extent may hinder reabsorbtion in the entero-hepatic loop they can cause serum level to drop like a rock. For those with absorbtion/reabsorbtion problems circulating b12 may be more than 90% what is taken in daily rather than with most people it being mostly recirculated.

    Further there is no real evidence that once the applecart of entero-hepatic recirulation is upset that it ever gets going properly again. That may be why once it is gone some folks need higher levels of b12 and can't go back to the way it was. The man writing up the paper on that some months back is still refining it and looking for the last few pieces of the puzzle, that being one of them.
     
  13. Freddd

    Freddd Senior Member

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    Hi Rich,

    In thinking of another diagnosis of exclusion, MS jumps right out. Folks with MS also have a high response rate to active b12s. They can go right into remission with mb12, adb12, l-carnitine and the rest of the vitamins and minerals. The response pattern to mb12 and adb12 of people with MS is different than those with CFS/FMS. It is far more concentated in the neurology, mood and energy and much less invloved with methylation. It may be that methylfolate doesn't play as big a role but it is hard to say for lack of folks trying it. The Japanese studies of high dose mb12 showed substantial benefit as long as the mb12 was taken.
     
  14. DrD

    DrD

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    ======

    Freddd,Jenbrooks,was there a follow up to this. I assume this is University Pharmacy. If so, what would I tell them in terms of placing an order? I assume no Rx is required. How concentrated are the drops? Also, what exactly is a drop, is it similar to a lozenge?
     
  15. jenbooks

    jenbooks Guest

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    I never did follow up on this. What is the compounding pharmacy that will make me my own sublingual ? Thanks
     
  16. Freddd

    Freddd Senior Member

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    I don't think that there was a followup. I asked about high dose sublinguals specifically. I didn't ask about drops specically but they said they could do about any form. I asked them about that more than a year ago now. I don't think you would need a prescription for oral forms of the vitamin, just injectables but I don't know that for sure. Drops is a liquid form. Their limits on soluablility is 20mg/ml. The problem with drops is short time in contact with tissues as it can run right down your throat. Swallowed b12 is absorbed at about 1%.

    I would call them and tell them your problem with commercial products, ie sweet alcohols. Perhaps they could do a sublingual without any sweet alcohols. They told me it would be more expensive for handmade products. They work from recipes available them. They have made every effort to please. Also, have you considered the possiblity of suppository products? Just curious. Then flavor wouldn't be a consideration and you could get long tissue contact time.
     
  17. keenly

    keenly Senior Member

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    excellent

    fred what are your thoughts about colostrum for repairing the GI lining, tissues?
     
  18. jenbooks

    jenbooks Guest

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    Freddd what was the name of your compounding pharmacy can you PM me or post? Thanks
     
  19. Freddd

    Freddd Senior Member

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  20. Freddd

    Freddd Senior Member

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    Hi Keenly,

    It never occurred to me. The years I was so bad off I had terrible brain fog and new and different ideas were difficult to come by. I have to say that my digestion now has never been better. It's certainly better than all the way back to high school. Probably have to go to 6th grade for it to be as normal. After that, the theory is that I started developing lactose intolerance and other problems. Because I had sensitivity to so many foods the lactose was not obvious. It wasn't until I had been on the active b12s for more than a year that the lactose intolerance became obvious. After I elliminated milk products 100% healing was able to complete. It took several years of slow improvment. The only thing that took longer was neurology. I am limited to 1 dose of milk products with lactase each week and I can avoid problems otherwise problems start up that are not taken care of by lactase. There is some accumulative inflammatory effect.
     

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