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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. Calathea

    Calathea Darkness therapy

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    SA - I get that you are infuriated by the terminology problem, but I think you're fighting that particular battle in the wrong place. Handing them a factsheet which tells them almost nothing about your medical condition but suddenly throws an argument about terminology in their face is just going to put doctors off. They will use the term they have been taught to use, and you need to work with them rather than against them. I wouldn't personally go any further than, "So you have CFS?" "ME, yes," and then leave the rest up to them. The important thing is to suss out how good they are at treating ME patients, to work with them if they are good, and to move quietly on to a different doctor if they are bad. Putting their backs up unnecessarily will not help anything at all, and will reinforce any preconceptions that ME patients are neurotic.

    If you want to argue about terminology, I suggest you form a campaign about it, rather than trying to make this part of your medical care. The factsheet you hand your doctors should discuss your actual medical condition, e.g. OI, need to lie down, dodgy heart rate, IBS, whatever applies to you.
  2. snowathlete

    snowathlete

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    I've changed the middle part as follows:

    (Parliamentary Under Secretary of State (Quality), Health; Conservative), 1 March 2011.

    The NHS website on CFS/ME states: The World Health Organisation (WHO) have classified CFS as a chronic (long-term) neurological condition and this classification has been accepted by the Department of Health.

    My condition has been diagnosed as the composite term ME/CFS, and I wish this to be recognised and not for one or more of these terms to be removed because of a doctors preference, whatever that may be, and for my treatment to be prescribed accordingly.
  3. Calathea

    Calathea Darkness therapy

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    But what is it going to accomplish, apart from convincing the doctors that you're a difficult patient and probably mentally unstable? All you've told them is that you want to pick a fight. And it's a fight that needs to happen in the public arena, but your personal medical care is not the place for it.

    Patients in the UK are treated the same whether it is called ME or CFS: there is no real treatment, they may try to push CBT or GET on you, it's luck of the draw whether or not you'll get a doctor who is good with ME. Long-term, the terminology matters because it's part of the overall perception of ME. In individual cases, the terms are currently used interchangeably. You won't gain anything by trying to argue with the doctor about their terminology, you'll just lose.

    Why don't you get involved in ME advocacy, in campaigning for proper terminology and recognition, via the ME charities or similar? Once you've recovered from the experience you've just had, of course - right now you should be resting, we all appreciate that.
  4. snowathlete

    snowathlete

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    As Fred mentioned, if you arent able to convey the required information (as i wasnt until i got some potassium in my body) thats where having some information like this written down helps.
    I agree that it needs rewording to appear less confrontational though, but its just a first draft.

    Patients are not treated the same regardless of the term ME, CFS, thats the whole point. ME being clasified as a nerological disorder means they have to treat it as one. CFS doesnt have this clasification.

    The NHS are also terrified of litigation so having something in writing like this means that they will treat you more carefully and give you more of what you want, because the individual doctors do not want investigations, and the NHS trust does not want to pay compensation for errors, which they do frequently. Its in the billions each year and covers a wide range of cases - not just serious stuff like a patient dying in their care.

    In terms of motive, it may not be about predjudice. The fact is that the NHS (and especially A&E) are over stretched and when a patient comes in, these pressures mean that the staff are trying to discharge asap to reduce load on the system. Its quick and easy to discharge me as having had a panic attack, as apposed to having me there for hours while they test my potasium levels.

    Having something in writing is also helpful because its a record of information that was provided, as apposed to verbal info which can be contested more easily.


    I am already involved in Advocacy btw, to the degree that I am able.
  5. Calathea

    Calathea Darkness therapy

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    I have never heard of a doctor who will use CFS and ME to refer to two separate conditions, and who also will allow the patient to choose which term is applied to them. They either use CFS or ME, and they have their own opinion on what the condition is that doesn't have all that much to do with which name they prefer, and may or may not not have all that much in common with what the illness is actually about. I've had some doctors ask me whether I preferred to use CFS or ME, but they were still clearly thinking of the conditions as the same. It didn't change how they treated me in any way, let alone my course of treatment. It just meant they were more respectful of their patients and appreciated that the name issue matters to us. You can't force a doctor to be respectful in that way: either they are already like that, in which case a simple, "I prefer to call it ME," will suffice, or they are not, in which case the more you fuss about it, the less sympathetic they will get.

    The important thing is that they recognise that you have the condition, that it's physiological, that it's serious, that they take it into consideration with regard to your treatment. Giving them a history of the name disputes and arguing about which name they must be forced to use won't affect that. Giving them your personal medical history, describing your symptoms, their severity and how they impact onto your life, is what they actually need. Another important point is that doctors are usually busy and will not pay attention to much information that they are given. If they will only read one paragraph, say, do you want to waste that on telling them about naming disputes, or do you want to use it to give them real information about how the condition affects you?
  6. snowathlete

    snowathlete

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    The dibencozide I've only been on for a week to ten days. The other two I've been on for about a month I think. I sort of titrated, in that I worked up to holding them in mouth for an hour, starting with just 15 minutes. I don't know if this approach was appropriate or not. The main thing for me was that I skipped the all important potassium and probably wasn't taking enough in the first place.
  7. snowathlete

    snowathlete

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    I think we will have to agree to disagree as I think the name used does potentially matter at the point of treatment but at any rate don't forget it was the doctor who raised the issue of the name, not me. He was saying one was correct and that the other was not used in the nhs which was simply not true.
  8. Freddd

    Freddd Senior Member

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    When people start healing and manitain healing they will use more of certain items than when thy are not healing. I have found that on the third day after the last item is in place for a certain type of healing to occur, it will, often supressing potassium. So maybe a person has added zinc and a few days later healing starts and potassium plunges. The thing is that every body here has been chasing how to heal for years. Now that healing is here don't pass it by. Try to stay in the sweet spot of things healing, using lots of potassium and methylfoalte. Though has been a long and difficut place to find don't keep wlking past it. Keep in mind that the object is to HEAL, TO GET BETTER.
  9. Dainty

    Dainty Senior Member

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    So awful this appened to you. :( I just wanted to quickly comment on this bit - please write up and send in a complaint if it's at all within your capacity, not only for you but for the sake of those who are treated after you. Maybe your complaint on its own won't do anything but if 2-3 come in from different people then it's very likely to get something done.
  10. Enid

    Enid Senior Member

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    I think you should complain too snowathlete - it's perhaps the only way to educate sheepish Docs on the front line. I much doubt in a similar situation ten years ago in A & E that the Docs concerned have learned any more about ME.
  11. snowathlete

    snowathlete

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    I will try to find time to complain, but I am in the closing stages of a very long and energy saping complaint with the DWP at the moment where my complaint is going before the Parlimentry Ombudsman, so i will have to see how it goes.
    I agree that not complaining just means it will happen again to someone else, and it is the combined weight of such complaints that cause results. I'll see what i can do.
  12. snowathlete

    snowathlete

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    How much methylfoalte should i be taking Fred? Im taking two of the 800 tablets a day. Should i take more for a while?

    I try to eat a varied diet in order to maximize the types of nutrients im getting, is that the right thing to do?

    My SAMe arrived today as well as the omega fish oils, so i will probably take those tonight also.

    I also wondered if you might have a view on why only my shoulder muscles hurt yesterday when my potassium went low. It seems odd that only these muscles hurt, on both sides, while the other muscles in my body were basically fine.
  13. SOC

    SOC Moderator and Senior Member

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    I agree that it's important that we complain about the poor medical treatment, but at the same time I see Calathea's point. I have learned from long, hard experience that the moment I need adequate emergency care is not the time to be arguing ME/CFS politics with the medical professionals. I give them only the info they need to deal with the immediate situation, otherwise their brains explode and they become incapable of listening.

    So, if I were to pass out in public, for example, and the EMTs were called, I'd let them do all the things they like to do because it keeps them happy and it does no harm. I might say something like, "This has happened before and this is what worked then...." If they want to do something that I know is bad for me as a PWME, I just flat refuse the treatment without feeling like I have to explain my decision. That is my right.

    I think the bad attitude of the public to our illness has made us inclined to try to justify ourselves too much. We know our medical professionals are ignorant of the details of our illness, that's nothing new. I am not going to educate this EMT/nurse/doctor in this brief encounter when they're already rushed, but if I'm not careful, I find myself trying to explain why this situation happened, or why I think a certain treatment would help. We don't have to explain ourselves, or justify ourselves all the time.

    They don't want an extensive education right then, they want to handle the immediate problem. "Such and such worked in the past" or "I can't tolerate (or am allergic to) sulfa drugs" is about all they can handle in the moment. They aren't going to do an extensive search of your medical record right then, so make definitive statements if you have to. I'd even go so far as to white lie if I had to, and that's a big deal for me. "I need a potassium test." "Why" "Because the last time this happened I was low in potassium" Okay, so maybe I never got taken to the ER for low potassium before, but no harm will be done by having the test done. Will they risk not doing the test once you've told them that? If I start trying to educate them about potassium depletion in ME/CFS or during methylation treatment, or whatever, their brains turn off. Basically, their brains turn off anytime they hear something that doesn't fit in with their current knowledge. Maybe after the fact, when they are not trying to resolve a crisis, we might be able to educate them, but in the moment, forget it.

    If I wanted to educate emergency medical professionals, and I admit that I've postponed doing so, I'd get the names of the EMTs and doctors and send then an information packet after the fact. "You recently treated a patient with ME. Because ME is a poorly understood illness, I thought you might be interested in this information..." Then they can digest the information (or not) when they actually have the time to process it.
    Little Bluestem, ahimsa and Dainty like this.
  14. Freddd

    Freddd Senior Member

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    HI Snowathlete,

    For me it is typically one leg, or one thigh or 1 calf or one side. I can't tell you why. I don't know how much metafolin you should be taken. Titrate for effect. If it keeps getting beter while you increase, keep doing it. If you have deficiency symptoms, keep going up. If low potassium starts deal with the low potassium while stable on Metafolin, then deal with metafoiln.
  15. Sparrow

    Sparrow Senior Member

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    So sorry to hear that you had to go through any of that. It's such a frustrating and helpless feeling when medical professionals won't take you seriously when you KNOW that something is a concern.

    I think rather than focusing on the name or trying to convince them that ME is a serious and legitimate condition, a different handout might be more effective for getting them to take you seriously. It's important information for them to have, but I doubt that any doctor will change their mind based on that piece of paper, and drawing attention to it that way almost gives you less credibility as a valid patient (which is awful, but also probably true). So as much as it's important for them to know, it may not actually help you in that situation.

    Potentially more helpful might be a sheet that was very technical and professional sounding, like it could have come from a doctor (because they tend to take that a bit more seriously), and that didn't mention supplements or even the reason for them (since "supplements" of any kind tend to conjure up bad associations for many doctors), but instead just said that due to current medical treatment, this patient is at risk of low potassium, then listed the symptoms to watch for that may indicate that, then maybe a note at the bottom to seek medical attention immediately in the case of severe symptoms.

    Looks like it is credible, and more importantly (as silly as it is) looks like it probably wasn't written by you. So you go from being some crazy guy who thinks he knows ALL about medicine so much better than his doctors (which is probably true, but they won't be inclined to believe) to somebody noticing the symptoms they were told to watch for and just following the directions laid out by some health professional. Isn't directly deceptive, but may omit the right things to get them to treat the concerns seriously.

    Almost nobody takes seriously concerns by somebody about their own health. It's a foolish piece of human nature, but it's pervasive. As a species, we have a tendency to assume that somebody else is exaggerating, or imagining things, or being paranoid. When their spouse or coworker is in bed with the flu, many people wonder on some level if they're REALLY so sick they can't do anything, or if they could push through if they really wanted to. Even good people, sometimes. I've found that the more I can remove myself personally from what I'm saying ("this other doctor mentioned...", etc.) rather than just educating them myself, the more successful things tend to be for me. And to be fair, they probably truly do get a lot of people in there who think they know WAY more than they actually do. Not that it excuses the terrible lack of education out there about our condition, but it helps me to keep that in mind sometimes. They can't tell the difference between me and the person who just took a whole bottle of iron and doesn't understand why their liver is shutting down.

    I'll admit that I'm still nervous to increase my own potassium too much through supplements. I know that if the kidneys are working properly any excess should pass out okay, but it's still scary going over that 100mg mark. The last thing I need on top of everything is a self-induced heart attack. :) I'm hoping to do what I can through food sources and electrolyte drinks where it's combined with sodium for now. Not ideal, I know. I'm just being a chicken with this. And I know that as I continue to ramp up my methylation, I will probably need to increase further than that. My body likes to send ice pick pains when I'm on the low side. Hard to miss, at least. :)

    Freddd - On the topic of "detox" side effects from methylation supplements, I'm interested in whether you have any ideas on which shortage in particular (or what else) might be behind feeling super flu-like, tired, and with really badly swollen/sore lymph glands. That's what a tend to get - from SAMe and Metafolin in particular. It almost feels similar to my post-exertional issues. Is it just that I'm starting the spring cleaning of toxins and that's triggering my glands to swell up that way, or might there be something I can do to help offset the problem? That's the only kind of adverse symptom I tend to get so far from the methylation supp's (aside from the lower potassium), but it's pretty severe when it's there.
  16. Freddd

    Freddd Senior Member

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    Hi Sparrow,

    Freddd - On the topic of "detox" side effects from methylation supplements, I'm interested in whether you have any ideas on which shortage in particular (or what else) might be behind feeling super flu-like, tired, and with really badly swollen/sore lymph glands. That's what a tend to get - from SAMe and Metafolin in particular. It almost feels similar to my post-exertional issues. Is it just that I'm starting the spring cleaning of toxins and that's triggering my glands to swell up that way, or might there be something I can do to help offset the problem? That's the only kind of adverse symptom I tend to get so far from the methylation supp's (aside from the lower potassium), but it's pretty severe when it's there


    It's tough to say in any specific example without all the detail present. Are you also taking mb12. What kind of folates are you taking? folic acid? folinic acid? Without more detail it sounds like a mixed bag of some low potassium, some low folate, some immune startup, lack of adb12 and l-carnitine fumarate. Are you taking NAC, GLutathione, whey? There are a lot of variable to be pinned deon.
    Fred
  17. chilove

    chilove Senior Member

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    I've been to the hospital twice in the last three months with low potassium before I found this board and the information here. It's no joke. You were very lucky. So glad you're ok!!

    If you pay more attention from now on you most likely will be able to feel more subtle symptoms that will indicate you are getting low in potassium... once you start recognizing it earlier it it won't hit you like a ton of bricks again unless you get too busy or distracted to notice the symptoms. Everyone's symptoms seems to be slightly different with major in common ones being fatigue/lowering of energy, muscle pain and nausea, some also report headaches frequently.

    My initial early low potassium symptoms are a slight lowering of physical energy and mood and some slight nausea and tummy rumbles. When I feel that feeling I take more potassium right away and can avoid the more painful muscle symptoms that come later with lower levels. My muscle pain is always in my chest and arms by the way. Interesting that it varies by person isn't it?

    Try to tune in more to those more subtle feelings and hopefully you won't be caught unawares next time.

    Best to you!

    Audrey
  18. madietodd

    madietodd Senior Member

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    Hi, Snow,

    I'm glad you pulled through this OK. I'm now thinking of keeping a card in my wallet stating that due to medications, I'm prone to low potassium. Because if I get hit by a car and am far from my supplements for however long, that's the issue that could hurt me.

    My potassium meter came in today's mail. I'm now doubly glad I sprang for it.

    Madie
  19. Sparrow

    Sparrow Senior Member

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    Fred,

    Thanks for the reply. I know that it's all a complex puzzle. Just thought I would ask in case you'd encountered the swollen glands thing in connection to anything in particular. I get that a lot, but it was particularly distinct and particularly bad with the methylation start-up. I've been on the full protocol (including 5000 - 10000 methyl B12, and one Dibencozide daily). Wasn't taking any glutathione, whey, etc. just in case I was one of that group. :) Wasn't taking any folic acid, for similar reasons. When I started to get really sick, I decided to put the methylfolate on hold for a while and tackle other things in my program, as I didn't want to build up any bad momentum (I think I got lulled into a false sense of security and increased my dose too quickly, so I wanted to try fresh). Consequently can't say if the symptoms would have passed on their own or not with time. Will give it another try again sometime. Didn't notice any problem with any of the B12's on their own (potassium dropped some, but that was pretty easily corrected as far as I can tell). Just the methylfolate, and previously the SAMe. At the time I started the SAMe, I knew nothing about methylation and wasn't yet diagnosed with ME, so just cut the dose down a lot and rode out the initial side effects and they passed with time.

    Thanks again for the help. I didn't expect that you'd necessarily be able to pinpoint the problem for me. Just thought it was worth a try to see. :)
  20. drex13

    drex13 Senior Member

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    Your potassium meter ? Can you elaborate on what that is ?

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