The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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crazy potassium story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by vortex, Mar 26, 2017.

  1. vortex

    vortex Senior Member

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    Ever since I found out I have MTHFR, I have been taking methylation protocol for 5 years and have experimented with various amounts of methylfolate and I do injectable mb-12 every few days. I have experimented with adding various things such as p-5-p, TMG, betaine hcl, sam-e LCF, etc.

    But one thing I have never experienced is the need for potassium, I have always been puzzled by this.

    So fast forward to lately. I really havent made much progress and felt like I was in a dead end on 2mg methylfolate and 10mg mb-12

    I ran a HDRI panel and found that my folinic acid was also low and I have never
    thought about taking any as I got the impression it was not needed.

    So in addition to my 2 mg methylfolate I I had been taking.

    I also did a couple of other things, I added in gamma tocotrienol to protect BH4
    and I have high ferritin and I have been donating blood.

    All of a sudden, I have had serious low potassium events.

    At first I just thought I was overmethylating so I took some niacin but that didnt help.

    Anyway, something has made a shift in my methylation block that 5 years of simplified methylation protocol hasnt addressed.

    So I have done 3 things total that were different, folinic acid. blood donation, gamma tocotrienol.

    The folinic acid does seem to be involved as I noticed it when I started taking it.
    They says folinic makes pyridimines and so I guess that mean nucleosides that
    make dna, so if I had a deficiency of folinic, then that might inhibit cell division
    which then would then limit the demand for potassium, no cell division, no potassium
    consumption.

    So my theory is that even though I was taking methylfolate and mb-12
    which was trying to ramp up methylation cycle and cell division, there
    was a deficiency of nucleotides that was holding up cell division
    and that is why I didnt get an increased effect with taking more
    methylfolate. I ramped up to 5mg methylfolate and it did nothing.
    So the backlog theory of nucleotide shortage makes sense.
    I also did a organic acid urine test and the thymine didnt even
    register any amount. So I must have been very deficient.

    second, I have been studying martin pall theory and he says that peroxynitrite
    can destroy bh4, so I have been taking gamma tocotrienol which quenches
    peroxynitrite which could preserve bh4 which could then get the methylation
    cycle moving and then create the demand for potassium.

    third, I have been giving blood, I have high folic acid blood levels and I know that
    it can inhibit methylfolate, which can inhibit methylation cycle which can inhibit cell division.
    If you give blood, it will lower folic acid levels and lower the folic acid blocking effect
    making the methylation cycle ramp up. creating cell division and need for potassium.

    I gave blood yesterday and woke up with severe hypokalemia, was it giving
    blood lowered my electrolytes like potassium? I dont think so, because it was
    a startup reaction. So it must be the lowering of the blood levels of folic acid.

    I have been taking the gamma tocotrienol and folinic for 2 months and have
    experienced a little bit of low potassium, but not nearly as much as when I give blood.

    I am posting this to help someone out there that is stuck and is not getting
    their methylation block lifted as these things really havent been mentioned
    in trouble shooting methyation cycle blocks.
     
    Last edited: Mar 26, 2017
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  2. Learner1

    Learner1 Professional Patient

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    A few questions come to mind - I've been travelling some of the same territory... I'm familiar with Palls and Maes' papers, having BH4 and peroxynitrite problems myself, and take similar amounts of MTHF and MB12. I don't take folinic acid. This was very helpful to me:

    https://www.ncbi.nlm.nih.gov/pubmed/24669210

    What did the rest of your HDRI Methylation Panel say? Do you take adequate cofactors, like P5P and riboflavin? Do you take SAMe, methionine or TMG? Hard to know what's going on without more info.

    My doctor and I concluded my mitochondrial membranes were shredded due to lack of BH4 and peiroxynitrites damaging them, so I've been taking NT Factor lipid replacement therapy. I also take CoQ10, magnesium, d-ribose, and both ALCAR and l-carnitine. I tried PQQ and MitoQ, with no noticeable difference. I've also needed large amounts of vitamin C, P5P, and riboflavin, in addition to the folate, MB12, HB12, and a little niacinamide.

    My methylation block showed up in a homocysteine of 3 and almost no methionine. My doctor's explanation matched up with richvanks explanation.

    Is it your serum ferritin that's high? How high? Do you have the HFE SNPs? Or possibly an infection causing high serum ferritin? If it's an infection, you may want to hang on to your blood. Mine was very high for a year until my infections improved.

    Here's some info on the potassium issue. There are other discussions on PR as well, and Ben Lynch has discussed it.

    http://forums.phoenixrising.me/inde...tation-needed-in-methylation-treatment.28494/
     
  3. vortex

    vortex Senior Member

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    I notice you didnt mention gamma tocotrienol. Pall mentions it but doesnt emphasize it.
    But it is the only thing that can quench peroxynitrite effectively.

    I have tried all the cofactors you mentioned, p5p, sam-e tmg, betaine etc. etc

    I have also take all of the other things you mention, coq10, magnesium, d-ribodse, alcar, carnitine, LCF, PQQ, mitoq, you name it. None made the progress that gamma tocotrienol, folinic and phlebotomy has made.

    I have a single hemachromatosis gene

    but my ferritin was 380.

    It should be 50.

    It is now down to 200 since doing phlebotomy. I have considered that is was from infection
    but I am feeling better and better as it comes down. I am going slowly so I dont go too far.
    But this folic acid aspect is interesting and not expected. I am going to recheck my
    folic acid levels and see how far it has moved. I have always noticed that I feel better
    even from the little blood loss that occurs when I get my blood tested. I literally feel
    better, the rest of the day even from losing 100ml. from a few tubes.
     
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  4. Learner1

    Learner1 Professional Patient

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    I take gamma tocotrienol, too, and a lot of other things as well, including IV glutathione, which can tackle peroxynitrites.

    Increasing SOD production is important, too. I take manganese and do hyperbaric oxygen therapy.

    I'm compound heterozygous for the two significant HFE SNPs. My serum ferritin was 650, and is now around 220. It was around 80 before I got sick. I'm not getting rid of any blood. I've had 5 chronic infections, including c. pneumoniae, and treating them, a lengthy process, is making a difference. C. pneumoniae is notoriously difficult to get rid of, and my doctor thinks it's been hanging out in my liver.

    Getting heavy metals out of mitochondria is helpful, too. Having happy mitochondria is one of the keys to wellness.
     
  5. vortex

    vortex Senior Member

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    You lost me, Why dont you want to bring your ferritin down to a safe level?

    high ferritin is a huge oxidative load, which can sap all of your reactions and antioxidants
    like glutathione.

    To me, I would say if you have many chronic infections that points to a low intracellular level of glutathione
    have you checked your levels to see if they are still low?
     
  6. vortex

    vortex Senior Member

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  7. Learner1

    Learner1 Professional Patient

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    I became sick after cancer treatment and have a suppressed immune system, damaged mitochondria, and a boatload of other issues.

    One lab result is not an end goal. We are complex systems of systems, made more complex by the environmental factors (toxins, flora, and fauna). And an unfortunate collection of SNPs.

    Unwinding a complex set of issues like we have takes time. I have a good doctor, and hes directing an orchestra, and I'm slowly improving over time. It's been a marathon.

    Glutathione production and recycling is an ongoing challenge. The methylation block sure doesn't help. It's a matter of getting the wheels to turn and keeping the ingredients coming in the right and ever changing proportions. As bottlenecks get fixed, we move onto the next thing.

    As for ferritin, we're aware of the potential for hemochromatosis, but my doctor and hematologist think this is an acute phase reactant showing cells are being damaged by something, and not iron overload. I've had abnormal iron studies which suggest B6 deficiency anemia, and have had to bump P5P intake up to 350mg daily. It's a lot, but used in sphingoloipid production, detoxing, been production, etc.

    And, it's been coming down steadily as we've tackled the infections. I also had a CT scan and cancer markers checked, as malignancy is another explanation.

    Lots of variables in the equation....:rolleyes:

    Good luck with the potassium!
     
  8. Learner1

    Learner1 Professional Patient

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    1g.

    The cpn treatments I've tried include vitamins A, C, and E, rifampicin, azithromycin, artesunate, artemesinin, berberine, banderol, Samento, UVBI, and HBOT. I seem to be winning at the moment...

    Cpn has different lifestyle phases, requiring different strategies to kill them. It's not as bad as Lyme, but it's pretty tenacious.

    Thanks for sharing the patent...interesting reading. Looks like GT goes after the cpn EBs. I'll bring it up with my doctor.
     
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  9. jjxx

    jjxx Senior Member

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    You are talking about Gamma E, but the patent states Delta E. They are different tocotrienols, I am confusing now.
     
  10. Jenny TipsforME

    Jenny TipsforME Senior Member

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    BTW do you know it is a bad idea to give blood if you have ME (for the person receiving it)? If you have a diagnosis, or suspect this is what you have, it is best to stop. In some countries we are banned from donation.

    Early experiments with monkeys passed on ME from humans through blood. IIRC about 5% of ME starts just after receiving a blood transfusion. Ron Davis' current research indicates there's something in the blood serum.
     
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