Lou
Senior Member
- Messages
- 582
- Location
- southeast US
Hear, Hear!, Madietodd.
Hi Madie,
Well, Crux beat me to it, but I think you pierced right to the heart of the matter. Thanks for that post.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Hear, Hear!, Madietodd.
These two sentences seem to contradict each other: you are using your personal experience as your basis for authority, to support your theory (unsupported by objective clinical testing) of how it worked for you. How is that better than basing it on a theory that should work for a few people?
Are we talking about your personal subjective experience again, regarding "phantoms assigned to the nervous system waking up"? Why do you assume that your personal subjective experience and interpretation are correct, but those who have a different experience and interpretation are seeing phantoms?
The attitude expressed here bothers me quite a bit. You are asserting that if people want to be healed, they must listen to you to the point of ignoring their own perceptions of their symptoms. Just like GET? Or is it different when you are the one telling us we are wrongly interpreting our symptoms, and sticking it out is the key to our medical salvation?
Of course, pushing past pain or other unpleasant symptoms is sometimes necessary in medicine, but it's usually based on far more than personal subjective experience of how the "cure" will work. I think it's fair for people to demand an explanation that is more rigorous than "but it worked for me and maybe for some other people without ME/CFS".
Here's the crux of the problem. You're saying we need to use our brains and intelligence to understand things in a specific way (your way), even though we don't have the medical expertise to, for example, distinguish between high and low potassium. In fact - YOU don't have that expertise either. Even if you were a trained doctor, you have not evaluated the people that you are encouraging and goading into doing things your way. You do not know if their potassium is high or low. You do not know if they are taking a lot of NSAIDs every day or have messed up adrenals and are at increased risk of potassium overdose.
This is why people are getting upset. You are telling them that they are misinterpreting their body signals and you are trying to tell them what is really going on, even though in addition to lacking the necessary medical expertise, you have LESS information about their problem than they do - you are not experiencing it. They are. Ideally we would all have excellent doctors taking care of us and all of the testing we want, but in the absence of that, I'm going to trust my perceptions of my symptoms over some internet guy's perception of my symptoms.
That's not to say that your experience isn't useful or appreciated. But your way is not THE way. Your experience of ME/CFS is not the only experience of ME/CFS. You can be wrong. Please keep that in mind when helping people.
Taking into account the advice given recently by Madie (and, too, my history with doctors in dealing with my ME/CFS) I think I'd rather have a knowledgeable person who most often knows what he's talking about 'practicing medicine' without a license than one who has a drawer full of licenses who knows, despite all his testing(and my money), beans about what's going on with me, or ME, either.
therron, can you detail your approach a bit more? I also have similiar mutations, just with a CBS.
Salt substitute may not be pure potassium chloride. Mine says that tsp. (610 mg) is 17% of the Daily Value, so a teaspoon would be 68%. Most potassium tablets are 99 mg., so tsp. of this salt substitute would be equivalent to 6 tablets.For people's info, 1 standard teaspoon of pure potassium chloride is roughly the RDA of potassium
I don't know how literally you mean 'along with'. My dietitian says not to mix the sea salt and potassium salt because the sodium in the sea salt will interfere with the absorption of the potassium. I do take sea salt, just at a separate time from the potassium salt.Also, I usually take some sea salt along with any potassium, to make sure the body can keep a balance.
Drugs which will or may cause an increase in potassium:Are there drugs people can be taking that decrease potassium loss? There are some diuretics that increase potassium loss. Are there other drugs that do that too?
I will leave this with just one thing, if your understanding of your situation was correct and effective we wouldn't be having this conversation because you would be healed.
I'm trying to tell them that some of those signals are "noise", "phantoms", "hallucinations" and similar such things that are charactersitic of both the deficiencies caused damages and of the healing of the same. This causes cognitive dissonance as their beliefs don't include that they could be "hallucinating" or interpreting noise as something of significance.
I had potassium low enough to require a doctor's intervention for a while, and I will say that they are VERY careful about the dangers of giving people too much via supplements. It's probably erring on the safe side, but there's a reason behind that 99mg limit on supplements that contain it, and even with low levels, they're very slow and very careful about how much they prescribe (with a strong deficiency, I was only supposed to take one 99mg slow release tablet per day). When it's balanced with other things (as in a food product, or a sports drink), there is much less danger of complications. I would say that potassium supplements seem to me to be one of those things that it would be dangerous to mess with without regular blood tests to make sure that levels aren't getting too high. Too high is just as dangerous as too low.
From what I was told by my doctors, when things go wrong with too much potassium, there is the potential for them to go VERY wrong (sometimes fatally wrong), very quickly. It's the balance of sodium and potassium that keeps your heart beating right. Too much potassium all at once without anything to balance it out can be dangerous (keep in mind that potassium is one of the methods of lethal injection). When we supplement, it's our kidneys that we're relying on to regulate those levels and keep too much from circulating. With a relatively small dose, that's probably not too much of an issue, but it's probably worth being aware of if anyone plans to take a large dose. If everything is running smoothly and the dose is not too much for them to handle, the kidneys should be able to do it. But it's good to be informed. The same logic says that even if you only take in a tiny amount of potassium your kidneys should be able to hold on to enough of it to keep your body levels sufficient (and many of us know sometimes they just can't). Combined with the high levels of potassium in many foods, that's why potassium deficiency is so rare in the general population. I don't want saying that to come off like a scare tactic (it's not intended that way). But it's something my doctor and specialist mentioned to me when they were explaining their reluctance to increase my potassium dose that had an impact on me.
While it is easy for me to dismiss posts that appear so obviously tainted with prejudice and misinformation; I feel I must clarify some of this because many people here may be vulnerable to this.
Sorry you went through that. No fun at all.
To my knowledge, potassium supplements are recognized as often being quite hard on the stomach and it's gastric lining. That's why people with ulcers, etc. are usually warned not to take them, and why people are warned to take them with food and plenty of water.
I had potassium low enough to require a doctor's intervention for a while, and I will say that they are VERY careful about the dangers of giving people too much via supplements. It's probably erring on the safe side, but there's a reason behind that 99mg limit on supplements that contain it, and even with low levels, they're very slow and very careful about how much they prescribe (with a strong deficiency, I was only supposed to take one 99mg slow release tablet per day). When it's balanced with other things (as in a food product, or a sports drink), there is much less danger of complications. I would say that potassium supplements seem to me to be one of those things that it would be dangerous to mess with without regular blood tests to make sure that levels aren't getting too high. Too high is just as dangerous as too low.
From what I was told by my doctors, when things go wrong with too much potassium, there is the potential for them to go VERY wrong (sometimes fatally wrong), very quickly. It's the balance of sodium and potassium that keeps your heart beating right. Too much potassium all at once without anything to balance it out can be dangerous (keep in mind that potassium is one of the methods of lethal injection). When we supplement, it's our kidneys that we're relying on to regulate those levels and keep too much from circulating. With a relatively small dose, that's probably not too much of an issue, but it's probably worth being aware of if anyone plans to take a large dose. If everything is running smoothly and the dose is not too much for them to handle, the kidneys should be able to do it. But it's good to be informed. The same logic says that even if you only take in a tiny amount of potassium your kidneys should be able to hold on to enough of it to keep your body levels sufficient (and many of us know sometimes they just can't). Combined with the high levels of potassium in many foods, that's why potassium deficiency is so rare in the general population. I don't want saying that to come off like a scare tactic (it's not intended that way). But it's something my doctor and specialist mentioned to me when they were explaining their reluctance to increase my potassium dose that had an impact on me.
Too little potassium is a very real danger as well, and I do feel that it is a pretty definite risk during methylation start-up. But like others here have mentioned, I feel like sometimes people on these boards end up taking VERY large doses of potassium by supplemental standards, and may not always realize the risks. Or sometimes make reference to the recommended daily intake for potassium from food sources without realizing that there are government regulations in place when it comes to supplementation that are very different. And as others have mentioned, the symptoms of too much and too little potassium are extremely similar.
I'm not anti-supplement by any stretch (I take tons), or anti methylation supports (I very much believe in that problems with methylation pathways and/or an extra need for B12 is involved in at least some of our problems), and I hope that I'm not coming across otherwise here. I also am all too personally familiar with how much we all need to take our health and treatment into our own hands much of the time. But I also recognize that some interventions carry more risk than others, and that it pays to be informed so that we can be careful where needed and to make informed decisions about what we do. I do take supplemental potassium (albeit at low amounts), and would increase it if my levels were consistently low and I was unable to bring them up through diet changes alone.
I just wanted to echo what others were saying here in saying that I hope people are using extra potassium only as intended, to offset levels made low by methylation interventions (and not in high amounts before there's evidence it's needed), when food sources have proved insufficient. And that the people taking supplemental potassium in large doses are getting their blood levels checked at least sometimes to make sure that everything is okay. We all have enough challenges to deal with, and I always like to be fully aware of the risks of the interventions I try.
As a side note, I don't want to get in the middle of the conflict that seems to have come up in this thread, but for what it's worth, I think that sharing information and things that have helped us is one of the most valuable things we have in combating this illness right now. And it probably will be until the medical community becomes more knowledgeable and more supportive. So I give kudos to anyone who has dealt with ME/CFS and chooses to spend some of their limited time and precious energy trying to help others here who are going through the same thing. On the other side, I also think we all need to be careful sometimes to make sure to use other patients as a resource but to also do our own research and to investigate risks as much as possible before we proceed with something ourselves.
While it is easy for me to dismiss posts that appear so obviously tainted with prejudice and misinformation; I feel I must clarify some of this because many people here may be vulnerable to this.
It would take 1/6 the amount of aspirin to induce death as it would potassium chloride.
Although potassium chloride is used with lethal injection, not all states add it because the injections of barbituates and paralyzing agents work well enough on their own.
There are so many conditions associated with low potassium, that drug companies are truly making a killing with the fear mongering wrought by those who disseminate false information about it.
And finally, I would fire any doctor who(if this is true), treats hypokalemia with 99mgs. of K daily.
One issue i have with the idea of 'using my intelligence' to sort out how much of each supplement etc to take is that that intelligence seems to be based on some members abilities to feel minute changes in their bodies and then attribute them to certain things they have done or taken. For them, they are very lucky that they have a body and mind that work that way - that they always have a deep knowing of what works for them and what does not. I dont have this ability (although i am an intelligent woman) i dont know what potassium deficiency caused by methylation start up feels like, i dont know if this has ever happened to me. I know that the low dose MB12 injections have helped and i continue to use them. I know taking a higher dose makes me feel horrible for a long time and my itelligence in this situation tells me not to do it.
I have been ill for a long time, but i also have a good family life. I have many commitments and little time to spend wondering about my bodies reaction to supplements (un less its immediate and massive) Many of us here are simply human and do not have these abilities. I dont even know what the symptoms of potassium deficiency are.
Earlier Fredd you advised people who had a problem with the Active protocol and your advice to stick to their doctors advice - i have a good M.E doctor who i am happy with and i DO stick with her advice, but it gets a bit wearing when every time i discuss something that has been prescribed or suggested etc you chip in and tell me its wrong! Maybe it is wrong, maybe its right, but i dont know you from Adam. I'm so glad you are helping s many others and that you are healing so well, i hope for the same, but being constantly told by you that i must listen to my body, and then when i do listen and need to back off you criticise it and say i am having hallucinations? I understand your strong desire to help others heal, but maybe you need to adopt a more gentle approach to others.
All the best, Justy.