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Had to call an ambulance because potassium got so low...

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by snowathlete, Feb 23, 2012.

  1. chilove

    chilove Senior Member

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    Hi Madie,

    Please tell me more about the potassium meter.. thats cool!

    Thanks!

    Audrey
  2. snowathlete

    snowathlete

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    What's this potassium meter then? Is it something like a glucose meter that diabetics use?
    If it is then it could be really handy I am guessing.
  3. madietodd

    madietodd Senior Member

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    I bought the Horiba (http://www.amazon.com/Horiba-Cardy-Potassium-Meter-C-131/dp/B006O12HS2/ref=pd_sbs_indust_1). It uses a bit of saliva. I'm now madly searching through threads for the posts about where we should be keeping our levels. Not very successfully so far!

    If anybody who knows about such things sees this, I'd also like to know how long to wait before measuring, after taking potassium. If I test low and supplement, I want to keep adding potassium until my level is good. How do I best do that?
  4. chilove

    chilove Senior Member

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    Sorry I don't know either Madie, but you may want to start a new thread about this meter and your subsequent questions....lots of us will be interested.. :)
    Little Bluestem likes this.
  5. Freddd

    Freddd Senior Member

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    Hi Sparrow,

    Weel, matching up for the best fit, and not everything fits for any one thing, low methylfolate/low potassium. When the SAM-e stimulates the methylation you get low folate signs and you get low potassium signs.
  6. kurt

    kurt Senior Member

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    Just want to point out that CFS patients with potassium issues might use the word 'hypokalemia' in an emergency to communicate with emergency personnel. The ER certainly will know that is an emergency, as is the opposite, 'hyperkalemia,' too much potassium without enough balancing sodium. Probably those of us with this issue should wear emergency alert bracelets when we are out and about. Maybe someday. And if you have had a blood test with low potassium, you have historical evidence of being at risk for transient hypokalemia.

    BTW, when I start getting low potassium symptoms, I also take a balanced mineral solution, getting the cal/mag up along with the sodium/potassium seems to help very quickly, sometimes within seconds the pain diminishes.
    ahimsa likes this.
  7. rydra_wong

    rydra_wong Guest

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    Snow you are very fortunate that you knew what to do and were able to do it in time. This is what scares me about this protocol. I am surprised that after such an experience you are continuing as before. I myself find that if I take those elevated doses of mfolate, it makes my potassium unstable, and I find that dangerous so that I am unwilling to take that high dose. I settle for the lower dose and don't have such issues. When you are out and about you cannot lay your hands on sufficient potassium at short notice and 99mg is nothing...I can't believe it was enough to get you by.

    If your doctor did not lose the labs again and can see that you were low potassium, maybe you can get him/her to prescribe you some potassium pills in sufficient dosage to be safe that you could carry around with you. If so, your emergency visit might be very worthwhile in terms of preventing a worse incident in future.

    Take care
    Rydra
    anne_likes_red and madietodd like this.
  8. Kina

    Kina Moderation Team Lead

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    There quite a few things that can cause hypokalemia and ER's do have protocols for dealing with hypokalemia.

    When severe hypokalemia is suspected, the person is placed on a heart monitor, IV access is established and respiratory status is monitored. Potassium replacement therapy is commenced based on symptoms and potassium level (after laboratory confirmation).

    People who have mild or moderate hypokalemia (level of 2.5-3.5 mEq/L) usually don't have symptoms. If the person has mild symptoms, they may required oral potassium replacement therapy. People with mild hypokalemia may not need any potassium replacement at all if the underlying cause can be corrected (eg caused by vomiting or dehydration). This description, of course, applies to the "average" person, not somebody diagnosed with ME -- but the point is that potassium level and severity of symptoms needs to be addressed not if they are diagnosed with ME.

    When a person has cardiac arrthymias or other significant symptoms, then more aggressive therapy is needed and the treatment is similar to the treatment of severe hypokalemia.

    IV potassium is given when the potassium level is less than 2.5 mEq/L. Replacement therapy with IV potassium takes more than a few hours as infusion has to be slow. They should also be looking at serum magnesium level too because if magnsium is low, it is difficult to replace potassium adequately if magnesium is low.

    If an ER is not following protocol for hypokalemia, especially if it is a recurring problem (especially with markedly severe symptoms), no matter what it is caused by, then a letter of complaint should be written.

    Kina.
    kurt likes this.
  9. richvank

    richvank Senior Member

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    Hi, Snow.

    I, too, am very sorry to hear about what happened to you.

    This post will probably not make me very popular, but I again want to urge people that if they do not have to use high dosages of methyl B12 and methyl folate to experience improvement, as I understand Freddd and perhaps some others do have to, apparently because of their particular genetic issues, I think it would be far safer to use hydroxocobalamin and something closer to the folate RDA dosage of methylfolate. This will leave the cells in control of how fast they bring up the methylation cycle and the folate metabolism, and thus how fast the cells reproduce, and how large the demand for potassium will be. If it is necessary to use methyl B12 to experience improvement, then I think that the dosage should be limited to something like 2 milligrams per day, sublingual. It may take longer to get the improvement this way, but I think it will be safer. It would be a horrible tragedy for someone to die in trying to correct a partial block in their methylation cycle, and this does not need to happen.

    When high-dose methyl B12 and methylfolate are used together, the normal control by the cells is overridden. The methylation cycle is overdriven, and the folates come up rapidly. This drives rapid synthesis of new DNA and RNA, and that speeds up the cell cycles for reproduction, producing a rapid and large demand for potassium. My opinion is that this is an unnecessary risk for most PWMEs, and that opinion is based on the experience in the clinical study that Dr. Nathan and I carried out.

    Please be careful!

    Best regards,

    Rich
  10. justy

    justy Senior Member

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    Hi Snow, so sorry you had to go through this terrible experience. Many years ago when i was first ill i had to call an ambulance due to severe shaking for many hours that wouldnt resolve - i was told it was a panic attack and left in a room on my own then told to get a taxi, in the middle of the night, it was really awful experience, which has recurred twice more since then. I have had a panic attack so i know what they feel like, but what happened to me was not panic. I was actually undiagnosed at the time (with M.E) and was the beginning of being told i had an anxiety disorder for 16 years before i got a proper diagnosis.
    It was funny to hear you are in Bristol - im only about 2 hours away in west wales - almost feels near! I do hope you recover quickly from this shocking episode.
    Im not doing the full protocol (Rich or Fredds) too much of a scaredy cat, but i am doing B12 daily injections with some slow, but worthwhile progress. I'm not to keen on supplementing with potassium due to the warnings about caridac problems, kidney issues etc and so far, just taking the MB12 doesnt seem to be having any adverse effects. I only do things very low and very slow.
    Please be careful, and take care, Justy.
  11. Sasha

    Sasha Fine, thank you

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    I agree with this. I tried Fred's protocol first, and quickly ran into symptoms of potassium and possibly magnesium deficiency that didn't go away no matter how much potassium and magnesium I threw at it and I was becoming dangerously debilitated, despite some initial marked improvement on the protocol. After several weeks I had to give up for my own safety. In retrospect I wish I had stopped raising my b12 dose and kept it at a lower but steady level which might have allowed me to keep building on my improvement.

    I switched to Rich's SMP which has a lower dose of b12 and in a different form for exactly this concern about potassium. I was reassured that there had been a clinical study on it in which the patients didn't run into potassium problems. The SMP didn't work for me at all so I've now switched to methylb12 but at SMP doses. I hope I'll see slow and steady improvement over weeks and months.

    It is frustrating for us PWMEs to not be able to have rapid improvement after such a long time of being so severely ill and I can understand people wanting to go fast (and as Rich says, some of us have genetic issues which require high doses to get an effect at all). For me, though, trying high doses left me worse than at the beginning (though I am now recovered) and was getting dangerous. The experience did at least give me a strong indication that fixing the methylation cycle is an avenue to explore for me, and for that I'm extremely grateful, both to Fred and to Rich.

    Good luck to everyone trying to find the right balance!
  12. snowathlete

    snowathlete

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    Thanks. The reason I'm carrying on is because it seems to be making me better from my ME. I catch colds now for the first time in years, and although it's early days I think I am getting more well.

    Also the reason I ended up having a problem and needing emergency care was purely my own fault. I'd completely skipped my morning tablets. Had I not have done that I would have been completely fine I expect.
    Actually I take this as a good sign because it shows my body is getting through a lot of potassium - why? Because its healing.

    I'm starting to think in terms of 'how much better can I get now' rather than will anything get me any better.

    I don't get out and about much but I have a bottle of potassium in my glove box now just in case and I'm taking a lot more each day too. Still not as high as most people though.

    I got my results from the second test, it was low but in range at 3.9. But then it was after a banana which I think someone mentioned probably had about 500mg in it which is five times my tablet dose. So I guess I must have been well below normal when it all started. I do wish it was all a little more certain but it seems that it works differently in each of us how much of everything we need etc.
  13. madietodd

    madietodd Senior Member

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    Sasha, I feel like I've been trying to reinvent the wheel! Would you mind posting, here or on my thread (http://forums.phoenixrising.me/showthread.php?15865-Folate-Issues-amp-Methylation) about the protocol you've figured out for yourself? So far, I'm on all of the basic active protocol co-factors, and just upped to 250mcg mb12 twice a day. I'm trying to figure out the metafolin dosage.

    Thanks,

    Madie
  14. Sasha

    Sasha Fine, thank you

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    Hi madie - I should have said "am about to start"! Was going to do Rich's SMP but substituting mb12 for hb12.
  15. snowathlete

    snowathlete

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    I think Rich makes some very good points and i wouldnt necesarily reccomend the more potent protocol as a first outing, or even at all necesarily. I started on Rich's simplified version and quickly had benefit, which proved to me that this methylation stuff really is relevant and the treatment beneficial.
    That was what convinced me to learn more about it and move to the more potent version. This version is probably more risky because of the strength and amount of what you are taking, meaning that you shoot through your potassium far quicker than is the norm. But that is because your body is using the potassium for repair, and ultimately you want that in order to hopefully get better.

    Whichever protocol you chose I would recomend reading up on it first and at least understanding at a high level, how it works, and what risks that brings.

    For me, the potential benefit of the more potent protocol balanced against the increased risks makes it worthwhile for me, personally. But its an individual choice, and i see the risk as being entirely my own.

    I wouldnt want my experience a couple of days ago to put anyone off - it hasnt me - but anyone reading it should realise that this more potent protocol, is not comparable to taking a few vitamin c tablets for example. Its more complicated and has more risk. Having benefited from these treatments (both protocols) I just wish that people do try at least one of the protocols, whichever one, because its the only thing that has made me more well.
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I agree, many or most of us do not need huge amounts so it is easy to stay in balance. So important not to overdo a few things and have problems later.
  17. madietodd

    madietodd Senior Member

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    I completely agree. I tried the SMP for 9 months and it didn't do anything for me. But I spent all that time trying to understand Freddd's protocol, and finally decided to try it out with modifications. The modifications being testing one thing at a time. I only switched from hb12 to mb12 10 days ago, and I'm on a tiny dose. Also I'm not adding adb12 yet; one thing at a time. My hope is to do this very slowly, giving my body time to adjust and hopefully to normalize, without needing large doses of anything.

    I did get some reactions in the first weeks that were immediately relieved by potassium, even though I wasn't taking either of the active b12s. I imagine the metafolin got something working, but I don't really know.
  18. Freddd

    Freddd Senior Member

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    Hi Rich,

    I would like to remind you that the start of this excursion on potassium was to find the casue(s) of so many people doing the SMP that were having all sorts of "detox" episodes.. It turns out to be a combination of two things that that had been formerly solved, but not figured out, with the ABP. SO the hazard of sudden potassium drop is present in the SMP. The only addituional variable is timing as it does not happen as reliably on the 3rd day as it does with the ABP. So as it turns out some of the "detox" episodes on the SMP are in fact low potassium episodes. Some of the "detox" episeodes on the SMP are paradoxical folate deifincy episodes. Some of the "detox" episodes on the SMP are induced by glutathione, whey or NAC . Some of the "detox" episodes remain unindentified.

    So it looks like any methylation startup that actually works at starting epithelial layer healing can also cause pow potassium, whatever the exact form as indicated by falling potassium levels as a flag of healing. I was looking for a sign that would show distinctly that mb12 was getting healing going and hycbl wasn't. Turns out that hycbl does get it started, applying the same flag criteria, but takes longer with the time to flag showing larger variance.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    This is an agricultural product. It measures potassium in a solution (which saliva is) in parts per million. Do you know of anyone who is using it for a person or are you being a pioneer? Have you used it on yourself yet? If so, what readings are you getting? Be sure to keep us informed of all you find out (perhaps in another thread, as previously suggested).

    I looked up the Horiba website and found their information on their Potassium Ion Meter:
    http://www.horiba.com/uk/applicatio...etails/c-131-compact-potassium-ion-meter-430/

    Horiba has a Medical division. Their products descriptions says, These automated analyzers meet the needs of various users including patients, doctors, private laboratories, clinics and university hospitals. I didnt see anything that looked like it was developed for patient use.
  20. baccarat

    baccarat Senior Member

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    Thanks for your post, Rich.
    I had been taking 2mg of hydroxy B12 plus 2mg of mb12 daily without any apparent problem but I have now decided to slow things down and will stick to the basic protocol.

    Snowathlete, are you sure it wasn't hypoglycemia?
    Since doing the protocol I have never experienced low potassium symptoms as described elsewhere.
    At times, however, I have felt over-energised and restless which I think may have pressurised my adrenals causing hypoglycemic / panic attacks kind of reactions, particularly at night.
    It usually got better after eating something sweet.

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