POTASSIUM SUPPLEMENTS made me ill

[Lou]

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.

 

[Lou]

Taking into account the advice given recently by Madie (and, too, my history with doctors in dealing with 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 doesn't know, despite all his testing(and my money), beans about what's going on with me, or ME, either.

 

[Freddd]

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.

Hi Valentijn,

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?

Nine years ago it was basically based on what I found in myself. I did a number of informal studies becasue I had to know what was going on and how much applied to other folks as well. I surveyed, ovwer several years approximately 1000 people developing the symptoms list with each of those people taking a single dose of mb12, mb12/adb12 or adb12. I had to know how symptoms tied to this very quick response I had. I was in a hurry as I was trying to save my life, and as it turned out, some other folks too. Those with symptoms, and I've detailed it elsewhere, had a noticable response within 2 hours, the bulk within 1 hour. 85% of those with lots of symptoms had 2 hour responses, completely unexpected based on cyanocbl clinical testing. Those without genuinely without symptoms had no noticable responses at all. Those with a few symptoms were the ones that tended to have weak reponses or no responses. The pattern of the symptoms appeared to be the determining factors. Since then I have watched many people continue, more than a thousand, on one forum or another some with better and some with worse compliance, some making just customizing changes, some making major structural changes. I'm not basing the whole thing on a theory about where the cycle gets broken as Rich does. So by his theory person X with a given set of symptoms and person Y with the same set of symptoms but different lab or gene tests, person X might have CFS/FMS/ME and other person who broke the cycle becasue of say paradoxical folate deficiency doesn't have CFS/FMS/ME becasue it isn't based on a reduced glutathione messing up the cycle. So it has a different "first cause" even if all the consequential symptoms are the same 5 years later. One person has CFS/ME/FMS and one person has the same broken methylation cycle from a different casue. So Rich is targeting just that one very specific cause of cycle breakage with the SMP. As he has said, I'm applying a much broader approach with the ABP and saying it doesn't matter WHY the cycle broke in the first place, the point is to fix it. What concerns me about that approach is that it produces a favored class that gets treatment and a whole lot of us that don't fit that narrow model. To me and the ABP it doesn't matter if the person got into trouble because of a virus, a vaccination, vegetarian, IF insufficiency (very rare), paradoxical folate deficiency or any other first cause. I don't see any reason to define a few percent of the sick people with SYNDROME HYDRA as CFS/ME/FMS and the rest are out of luck with an unknown mystery disease.

Working from that specific theory he is looking for specific lab results to "prove" effectiveness. I'm looking for people healing, regardless of what their lab results are concerning various microdetails. I've seen a lot of people heal substantially, to the point of being able to rehabilitate and start working. Since I am using healing as the criteria, and have observed hundreds of people acutally heal, based on large reduction of specific symptoms, discontinuance of medications as they are no longer needed and abilty to lead a normal life again. Having observed some hundreds of people heal I have a better idea of what that looks like. So when somebody has methylation startup as a result of whatever treatment, and they then have this whole new set of misery inducing symptoms, and a lot of people were all tied up in that here, on this board, when I came on in 2009. Having two populations with identical symtpoms, similar protocol and these two very different set of occurances, it got my attention. One group had some of these symtpoms, increased their potassium, adjusted their folate (after Metafolin became available) and got on to the business of healing. Here there were a whole lot of people having all these additional symptoms, calling it detox, and stalled in their efforts to heal for years of these symptoms. It was a puzzle. Was it due to hydroxcbl? Was it due to folinic acid? Was it due to missing cofactors? In the almost 3 years since based on these differences we now know, despite the lack of any official clinical studies which would certainly help clarify exactly what was going on, that people who started methylation have a drop in potassium level casuing all sorts of nasty symptoms that can hold up healing for years. So now we are learning how to spot that and some people have made use of that, improving the odds that they will heal reagardless of whether on the SMP or ABP. That's fine. My object is to solve the problem of healing, not any specific protocol. However, recognizing that it was a low potassium and/or low folate problem required being able to recognize what the clinical course of healing looked like, having seen it. A successful healing didn't leave those "detox" symptoms untreated to just go away by themselves. Based on a "detox" theory there was no way to quickly and effectively treat what turned out to be low potassium and/or low folate or the additional treaments didn't change the underlying problems. So the operating theory of "detox" pointed things in the wrong direction and didn't work for most of these folks. However a "low potassium" theory points at trying a dose of potassium and that was a BINGO for a lot of people in allowing healing to progress. Again, becasue of familiarity with induced low folate becasue of my own experience with glutathione I was able to recognizse that I was having a milder version of that from folic acid. When others tested that idea it paid off. Quirte a few persons are finding a problem with folic acid and./or folinic acid. Some of us most troubled for decades have found a similar problem with veggie food based folate. This is an uncomfortable finding from some theoretical viewpoints becasue it supports a different "first cause" and may be the reason the methylation cycle breaks for many of us. Again, as I'm not concerned with "first cause" except as it relates to healing, this is just about removing another roadblock to healing, not in defining who the target group is.

50 years of research on folic acid, cyanocbl and hydroxcbl gives us a picture of a population with a significant percentage in chronic functional folate and b12 deficiencies with hundreds of symptoms and doesn't tell us what a population with adequate active b12s and folate looks like. It leads to a lot of non predictive theories. It leads to lots of SYNDROME HYDRA folks who are undiagnosable, such as myself. After decades of being undiagnosable I was diagnosed with FMS and CFS becasue so many people had SYNDROME HYDRA they had to give some of it's faces a name. Many have accused FMS/CFS as garbage can diagnoses because to name it doesn't define the problem or the cure. For 20 years the medical system was out to punish SYNDROME X people with "imaginary woman's disease","yuppie flu", "It's All In Yiur Head" and other such things. After all it didn't fit their theories so it had to be imaginary.

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?

I have been through several rounds of neurological healing as I added various items. I have observed hundreds of people go through the same neurological healing. When something affects the nervous system so strongly as these deficiencies and system breakdowns do, there are effects. Characteristic for instance are paresthesias (another name for a sensory nerve hallucinations), olfactory hallucinations, visual hallucinations, changes in taste (another kind of hallucinations), mood and personality changes. All of these thinbgs result from "inappropriate neural signals" or loss of appropriate neural signals or a combination. Extra signals that mnakes it feel ike cobwebs on your toes are paresthesias, and hallucinations, and in another term "phantoms". All these things are signal noise, not genuine meaniful signals. They are noise caused by actual damage, demyelination and it's accompanying "short circuits" and many functional breakdowns from biochemical changes. Again, these all amount to noise, perceptions of things not real. One of the thigs some see is like "spiders" around the fringes of the visual field. Almost nobody believes their eyes have been invaded by physical spiders, they accept it as hallucinations, as visual noise and illusion, phantoms again. Virtually everybody undergoing neurological healing will have an increase in this noise which manifests in all sorts of idiosyncratic ways depending upon specific damage locations and specific biochemical changes. It will go through all sorts of changes over and over as the neural system heals as much as it can. This is different from chasing down the symptoms of low potassium or folate. The b12/folate affects very directly the nervous system which we use to perceive ourselves. It may be that 10,000 changes are needed to heal the neurology and each change will be perceived. I have regained feeling in formerly numb areas and again observed many people who have domne the same. The course of healing these is very similar in most people. First there are intense shooting pains, then intense painful tingling diminsijsing to tingling. Then feeling starts coming back and it is hypersensitive. A light touch can be painful. Slowly the hypersensitivity fades and more or less normal feeling returns to a square inch or so. Then it happens in the piece next to it all over again. There can be a year of increased and changing pains in an area that is recovering function. Despite the changes happening in the feet, it might be in either the peripheral neurology or the spinal cord or brain or all of the above. As other parts of the brain heals noise is generated and that is perceived as generally unpleasant stimulai. If it felt good nobody would be complaining. However, these are phantoms, just like "phantom pain" after amputations. These are noise signals in the brain that feel like pain in the no longer existing limb. Everybody who undergoes effectvie neurological healing who has had these damages has these "phantoms" I certainly had my share. The only difference is that I considered them phantoms and didn't get upset about them knowing that they too would pass. After the first round I also knew them to be signposts of healing. Again every person I have observed healing the neurology goes through experiencing these phantoms. Have you ever had stitches? The can itch like all get out at a certain stage of healing. How about healing from sunburn? Itches badly at a certain stage of healing. It doesn't mean that there is anything wrong. If ten people all describe such a little differently doesn't mean that ten people all have different things going on. If one person with the same sunburn healing in the same fashion decides that they have ants crawling under the skin, there is a word for that "formication". However, if they start trying to dig the ants out with a knife that is a differnt problem. Chasing phantoms is very unsatisfying becasue you can't catch them. Why do you assume that I didn't experience the same phantoms or that I use the term in a deprecatory way? I assume the defensiveness comes from years of mistreatment in the system that didn't believe our SYNDROME HYDRA was real. I just interpreted them differently. Phantoms wear whatever faces we assign to them. Learning to differentiate between symptoms that need something done about them, ie potassium and folate, versus transitory noise phenomina in the nervous system


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?

I'm not even going to deal with this one. There are too many chips on your shoulder. I don't deal in salvation though at times I'll make a try at salivation. In person I engage in enlightement teachings (mystical yoga) but I'm not going to get into that here and that isn't salvation in any case. 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. Isn't that what learning is about, changing one's understanding to be more effectvie?

This is why people are getting upset. You are telling them that they are misinterpreting their body signals

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. And always it is important to distinguish things that can be changed, like low potassium and low folate and other possible things, by symptoms, from "phantom" signals. And some didn't believe that it could be low potassium or folate until they tried it for themselves. I always found plenty of providers willing to take my money and run me through their therapy model as long as I was willing to pay. Not one guaranteed results or your money back. As it turned out not one of them had a theory or therapy that was correct and produced favorable results. Every one of them had a theory about what the various body signals meant. And they were all wrong. None of them want to hear how and why they were wrong. As the old joke goes "Q- How fast does physics theory change? A - One funeral at a time". And it was my funeral that was coming up fast. I decided I would rather change my understanding and heal than "prove I was right" and die.


I'm glad you have so much faith in the medical industrial complex. First through misguided research they create SYNDROME HYDRA and then they blame people for having such and then they can't identify it. The ABP has been through 20 or so iterations in the past 9 years because of many changes on the fly as understanding increases. In a strict research setting each of the cycles would have taken perhaps 5 years. I didn't have 100 years to wait, I was dying. I rather think you don't have a spare 100 years either. The difference is that I was out to solve a problem, not to prove something. So none of the things you ask from the stance of "proving" something in a specific clinical research way have been done in that way. Instead thousands of people have done things in many ways and variations, a Monte Carlo simulation in essence. Finding the patterns of what has worked and what hasn't worked has been my goal, much as Edison said, the 99% perspiration. Somewhere in all the carefully defined studies the art of observation has been lostm and proving a specific biochemical point has become more important than actually healing the people. Where ABP protocol is at at this point is that data mining methods could be used to pull out people in a plan and offer them a nutritional program that could heal substantial quantities of symptoms, reduce drug usage and utilization costs a predictable amount and get a significant proportion of those folks back to work. It may take another 100 years or more to prove why that can happen. In the consulting business I was paid for results, not nice theories and proof. We just had to find the docs doing fraud, not prove it in court.

I use HYDRA as a many faced monster sense. Here at Phoenix Rising we are speaking of a mythical bird rising from the flames, so doing battle with a mythical many headded monster seems to fit. And maybe you find that offensive that FMS, ME and CFS are defined subsets of that. Maybe all of us with paradoxical folate deficiency don't fit Rich's strict definition of ME, CFS and FMS which had to start with a specifc break in methylation despite all of us having that break in the cycle. If it matters to you fine, if it doesn't that's fine too

 

[Freddd]

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.

Hi Lou,

I wish I had run across somebody who knew something about this problem 20 years ago before my nervous system was so damaged. It would have left me with a lot more money and lots of other things to do with my life. I'm not practicing medicine and have no desire to. I expect individuals to use their brains and innate intelligence to identify their own best self interests and the practice of medicine would find that a threatening idea. What I am doing is learning how to pick out some very specific patterns of data from people and helping them understand how that fits into a larger system and trying to demonstrate how the medical industrial complex has made a lot of us sick. In doing so I am exposing the flaws in how research is done and how that creates classes of mystery diseases. And then the flaws in the medical system based on that flawed research are exposed. We have all fallen through the cracks of the system and those are the results of the flaws. I'm merely consulting on those cracks. When we have our mystery disease it is difficult to get good treament becasue nobody seems to know much about it and what they do know is usually wrong. There are a few docs out there that do better than the rest and those need to be recognized. What I do recognize is that you and I and all of us in out DIY treatment of this mystery disease is that we are actually better equipped to understand it quickly because the type of targeted variation trials we are doing. We have been able to identify low potassium and low folate, still just learning that, but awareness of it's possiblity is most of the problem. Welcome to the the adventure that can occur by sharing data. People who identify low potassium in themselves and identify all the obvious symptoms that are then relieved by potassium can be very helpful by posting that info on the thread for that purpose. The same for those who have identified low folate of one kind or another. For that matter those who have those symptoms come on with appropriate timing and they don't respond to the suitable trials can be helpful by posting that info as well. These things are all developmental and will proceed more quickly with more contributions. Thankyou for being willing to cooperate rather than getting all hot under the collar because it isn't finished and perfect.

 

[therron]

therron, can you detail your approach a bit more? I also have similiar mutations, just with a CBS.

Hi lampkld2
Through 3 years of experience trying out alternative treatments for impaired methylation/CFS/ME, I have a bank of experiences that tell me I have four categories of adverse reactions to supplements:

1. Immediate neurological hyperdrive (sometimes referred to as excitoxicity.) I can decrease this response by working on low and slow doses and reducing the overall number of methyl donors that I take.
2. The Two-Week response-neurological hyperdrive and/or gastro distress based on a cumulative effect. This ALWAYS worsens if dose is continued.
3. Inflamed/tightened throat and increased histamines. (sulfite/sulfate conversion issues?) This usually goes away after a couple of weeks.
4. Potassium drop-extremely tight muscles. Electrical misfiring in brain if not addressed over a long period. Improves with low and frequent doses of potassium and increase in potassium based foods.

So, with 3 years of bad experiences, why did I keep trying? The very same supplements that caused such extreme reactions for me caused life changing improvements for my sister, 80 year old mother, and nephew. We have genetic issues that won't just disappear by thinking happy thoughts. Also, my health was getting worse every year, and it was scary!

Here's what I did to finally get to the point of improvements. (Along with below, my basics are Vit A, C, D3, E. Cannot take B complex.)
1. I started by cutting a 1,000 mcg methy b12 into 8-12 pieces (hard to be exact). I took one piece for many weeks before increasing to two. Even this small amount made me hyper for about 3 weeks, but then things normalized. No improvements were noted in CFS/ME symptoms.
2. I'm not sure when I added methylfolate, but I used the same idea. Buy low dose tablets, cut into many pieces. Stick with each dose for a minimum of 2 weeks, but maybe up to a month or more. I added TMG and P5P after methylfolate.
3. It took 5-6 months to work up to the full 1,000 mcg mB12 and 400 mcg methylfolate. Still no improvements.
4. I started randomly trying pulse doses....a one time shot of a larger dose. Mb12 pulses NEVER gave me improvement. Methylfolate pulses were MAGIC!
5. My potassium problems build up over many months, not 3 days as most people find. I now take 50 mg potassium gluconate about 4 times a day in addition to increasing potassium foods. This works really well.
6. My current experiment is to use a "tiny sprinkle" of l-carnitine fumarate, ALA, zinc and selenium. This is going well. I have passed the 2 week mark!

I have no plans to increase doses of methyl supplements. My body can't handle it. I hope this is helpful.
PS FREDDD, I WILL ANSWER YOUR QUESTION NEXT. OUT OF TIME. (I added methyl donors before crash.)

 

[Little Bluestem]

For people's info, 1 standard teaspoon of pure potassium chloride is roughly the RDA of potassium

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.

I take no more that 1/8 tsp. at a time, with a cup of water. Others have warned that if it is not well-diluted, it can damage the digestive system.
ETA: Oh, I guess you were one of those people.

 

[Little Bluestem]

Also, I usually take some sea salt along with any potassium, to make sure the body can keep a balance.

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.

 

[justy]

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.

 

[Little Bluestem]

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?

Drugs which will or may cause an increase in potassium:
ACE Inhibitors (some?)
Angiotensin Receptor Blockers
Potassium Sparing Diuretics
Indomethacin
Nonsteroidal anti-inflammatory drugs
Heparin
Cyclosporine
Trimethoprimand and Sulfamethoxazole (Bactrim, Septra)
Beta-blockers (some)

Drugs which may cause a decrease in potassium:
Thiazide diuretics
Loop diuretics
Corticosteroids
Amphotericin B (Fungizone)
Antacids
Insulin
Fluconazole (Diflucan)
Theophylline (TheoDur)
Laxatives

Low blood levels of potassium increase the likelihood of toxic effects from digoxin.

http://www.umm.edu/altmed/articles/potassium-000320.htm

 

[Valentijn]

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.

... Are you saying I'm still sick because I misunderstand my illness?

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.

So they're actually experiencing what you think they're experiencing, and if they think they're experiencing something else, then they're hallucinating or misinterpreting their body's signals?

If you do respond, please try to stick to much shorter paragraphs. Normal paragraphs are difficult to read, and long ones usually aren't worth the effort to wade through.

 

[Lou]

Hi Fred, just to be clear the single quotation marks enclosing 'practicing medicine' in my post indicates I DON'T see you as doing so; was simply referring to what seemed an earlier accusation of such.

 

[Sparrow]

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.

 

[Dreambirdie]

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.

Hi Sparrow--

Thank you for your thoughts on this.

(re: my bolds) I totally agree that the potassium in a food source or sports drink is a LOT more balanced and less dangerous to mess with than the potassium in a supplement. That is the lesson I learned with my experiment-gone-wrong last week. AND WOW! I didn't know that an overdose of potassium is used in lethal injections. Given the effects an excessive dose can have on heart function, this does make sense.

I think it's a good idea for people to consider getting some labwork done before they begin supplementing high doses of potassium, and not just assume that their symptoms are an indication of low potassium caused by methylation, because someone on a forum said so.

Thanks again for your informative post.

 

[Crux]

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.

 

[Dreambirdie]

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.

This is a really strong opinion. Who are you to "clarify" and judge what boils down to other people's personal experiences? It sounds like Sparrow has found a sensible approach and a good doctor to work with. I found her information helpful and not in the least bit "prejudicial."

 

[Freddd]

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.

Hi Sparrow,

Thankyou for a most thorough and clear explanation on potassium. I hope it brings clarity to the whole thing. I would just like to add that time release potassium chloride is the most dangerous form of potassium because it can sit next to tissue for hours causing ulcerations.

 

[Little Bluestem]

Sparrow, and perhaps other, have alluded to this, but I want to give it its own post.

The ratio of potassium to sodium, calcium, and magnesium can be as important as the amount of potassium (or sodium or calcium or magnesium). The kidneys usually keep these in balance. They require the help of the adrenals, which produce aldosterone. Some of us have under-performing adrenals, which complicates the situation.

I had some weirdness a day or two last week that I thought might have been electrolyte imbalance (or not). I have already decided to do as Sparrow suggested and wait until I am doing the active B/Methylation protocol before taking any more high(ish) doses of potassium. I was trying to raise my serum level from low normal to high normal before starting. Since I had been at it for over a month, I may have succeeded. I will spare you the details, but I now realize that when I had the serum test my serum K my have been lower than usual.

 

[Freddd]

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.

Hi Crux,

Yes IV potassium is most definitely NOT a do it yourself item. And I agree fully with your last line. The K-DUR produts contain much larger amounts, 750mg and 1500mg. There are other brands and other doses.

http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=4237
DESCRIPTION

The K-DUR 20 product is an immediately dispersing extended release oral dosage form of potassium chloride containing 1500 mg of microencapsulated potassium chloride, USP equivalent to 20 mEq of potassium in a tablet.

The K-DUR 10 product is an immediately dispersing extended release oral dosage form of potassium chloride containing 750 mg of microencapsulated potassium chloride, USP equivalent to 10 mEq of potassium in a tablet.

INDICATIONS AND USAGE

BECAUSE OF REPORTS OF INTESTINAL AND GASTRIC ULCERATION AND BLEEDING WITH CONTROLLED RELEASE POTASSIUM CHLORIDE PREPARATIONS, THESE DRUGS SHOULD BE RESERVED FOR THOSE PATIENTS WHO CANNOT TOLERATE OR REFUSE TO TAKE LIQUID OR EFFERVESCENT POTASSIUM PREPARATIONS OR FOR PATIENTS IN WHOM THERE IS A PROBLEM OF COMPLIANCE WITH THESE PREPARATIONS

1.For the treatment of patients with hypokalemia with or without metabolic alkalosis, in digitalis intoxication, and in patients with hypokalemic familial periodic paralysis. If hypokalemia is the result of diuretic therapy, consideration should be given to the use of a lower dose of diuretic, which may be sufficient without leading to hypokalemia.
2.For the prevention of hypokalemia in patients who would be at particular risk if hypokalemia were to develop, eg, digitalized patients or patients with significant cardiac arrhythmias.

The use of potassium salts in patients receiving diuretics for uncomplicated essential hypertension is often unnecessary when such patients have a normal dietary pattern and when low doses of the diuretic are used. Serum potassium should be checked periodically, however, and if hypokalemia occurs, dietary supplementation with potassium-containing foods may be adequate to control milder cases. In more severe cases, and if dose adjustment of the diuretic is ineffective or unwarranted, supplementation with potassium salts may be indicated.


CONTRAINDICATIONS

Potassium supplements are contraindicated in patients with hyperkalemia since a further increase in serum potassium concentration in such patients can produce cardiac arrest. Hyperkalemia may complicate any of the following conditions: chronic renal failure, systemic acidosis, such as diabetic acidosis, acute dehydration, extensive tissue breakdown as in severe burns, adrenal insufficiency, or the administration of a potassium-sparing diuretic (eg, spironolactone, triamterene, amiloride) (see OVERDOSAGE).

Controlled release formulations of potassium chloride have produced esophageal ulceration in certain cardiac patients with esophageal compression due to enlarged left atrium. Potassium supplementation, when indicated in such patients, should be given as a liquid preparation or as an aqueous (water) suspension of K-DUR (see PRECAUTIONS: Information for Patients, and DOSAGE AND ADMINISTRATION sections).

All solid oral dosage forms of potassium chloride are contraindicated in any patient in whom there is structural, pathological (eg, diabetic gastroparesis), or pharmacologic (use of anticholinergic agents or other agents with anticholinergic properties at sufficient doses to exert anticholinergic effects) cause for arrest or delay in tablet passage through the gastrointestinal tract.


WARNINGS


Hyperkalemia

(see OVERDOSAGE)

In patients with impaired mechanisms for excreting potassium, the administration of potassium salts can produce hyperkalemia and cardiac arrest. This occurs most commonly in patients given potassium by the intravenous route but may also occur in patients given potassium orally. Potentially fatal hyperkalemia can develop rapidly and be asymptomatic. The use of potassium salts in patients with chronic renal disease, or any other condition which impairs potassium excretion, requires particularly careful monitoring of the serum potassium concentration and appropriate dosage adjustment.


Interaction with Potassium-Sparing Diuretics

Hypokalemia should not be treated by the concomitant administration of potassium salts and a potassium-sparing diuretic (eg, spironolactone, triamterene, or amiloride) since the simultaneous administration of these agents can produce severe hyperkalemia.

 

[Freddd]

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.

Hi Justy,

say i am having hallucinations

You are reacting to the word "hallucinations" and appear to be confusing that with "delusions". As I explained in the somewhat lengthy post above that these multisensory hallucinations are basically "noise" from damage or loss of functionality. It is in no way perjoritive. All I'm saying is that "formication" (the crawling of ants) and many things like it are neurological illusions that are self generated by damage or loss of function, interpretation being caused by what nerves are affected. In assessing the meanings, if any, of reactions of ones body is a matter of learning to do so, applying intelligence and discernment to what nobody but the individual in question can possibly feel.

To the degree they can learn to interpret so that it takes them towards the healing of CFS/FMS/ME the more likely to heal. If a person can catch that "scent" and follow it, they can heal to various degrees based what other comorbidities and complicating factors they have. It is all rather complicated in the end. In essence it is "debugging" the nutritional program and can only be done if one learns to see healing in their own body. The catch is if one can learn to see the direction, healing or deteriorating or treading water, quickly, one can try a supplement and see if it helps. If it takes a week, one can have 1 week cycles, if it takes a month that takes longer to find the way through the maze then. Time will vary depending upon substance from hours to months.

Good luck.

 

[justy]

Hi Fredd, thanks for the clarity on your thinking - i see what you mean about the 'noise' However, despite having been ill for many years and trying many supplements etc i am not able to develop this ability. I don't know why, and its not for want of trying to feel my way around the supplements etc. What i do notice is that regardless of what i take or eat the thing that always makes me ill is overdoing it and the only thing that keeps me feeling consistently well is doing nothing most of the time. Methyl B12 injections are helping somewhat, Magnesium has helped somewhat (RLS and severe daily cramps cured - took about a year) I do slightly better with selenium. Everything else i have taken does either absolutely nothing or else i cannot tolerate it. I have a very high cell free DNA and gene blocakges on my SODase. My doctor describes me as having 'very poor nutritional status' despite many years of an interest in and concern for my health through diet. The gains that i have made have been lost over and over again by overdoing or slightly increasing my activity levels, and as i said the only 'treatment' that really seems to help is resting and correct pacing. Thanks for your continued interest.
All the best, Justy.