salt tablets causing PEM?

[cfs since 1998]

Has salt tablets made anyone worse with PEM-like symptoms? I'm not talking about increased activity either, just salt by itself. Trying to figure out why I've been doing so poorly lately.

 

[Mary]

Has salt tablets made anyone worse with PEM-like symptoms? I'm not talking about increased activity either, just salt by itself. Trying to figure out why I've been doing so poorly lately.

It's maddening, isn't it? I just realized you and I have the same "birthday" - both have had ME/CFS since 1998! A birthday I'm sure we'd both rather not share!

I've had a rough couple of months, unable to get my energy back - I think part of it was due to a sinus infection which hits every time I crash and I theorized that it was raising IL-6 levels (I wrote about this elsewhere) - when I started astragalus which helps deactivate IL-6, got some energy back. but ---

I was still struggling and was pretty sure I remembered I used to feel better. And then finally - maybe - have solved the second part, which might be affecting you - low phosphorous. I first discovered low phosphorous issues in connection with thiamine, which caused a refeeding syndrome reaction - initial boost in energy followed quickly a day or 2 later with severe fatigue. Potassium did nothing for this particular fatigue and after more research decided it might be hypophosphatemia, hallmark of refeeding syndrome. And when I drank 3 or so glasses of kefir (dairy being high in phosphorous), within a few hours that horrible fatigue began to abate. I was so glad! It meant I could keep taking the thiamine and just had to add in phosphorous. This was in 2017 or so and I've had to take phosphorous ever since.

I figure my dose by muscle testing in general. Several months ago I changed my phosphorous supplement, and seemed to be doing okay. But the last couple of months I've been dragging. And then this past week pills started sticking in my throat, trouble swallowing in general, which can be signs of low phosphorous. Low phosphorous weakens muscles and the first place you usually notice it are things like the throat and eyes, the small muscle.

I increased my phosphorous supplement a couple of days ago and now have energy I have not had in several months.

So - your salt tablets may have altered your electrolyte balance which may have affected your phosphorous levels. Also, the salt may have affected your potassium too - low potassium can cause severe fatigue - I've had this too, especially after I started taking methylfolate in 2010 and have had to take potassium ever since. I had a very similar refeeding reaction, as I did with thiamine.

Ideally you could get blood testing for this. I haven't had blood testing recently, I go chiefly by symptoms and muscle testing. I don't have a doctor I can run to every time I get a new type of fatigue. One of these days I will go to the doctor and I'm sure my blood work will be fine!

An easy thing to do to see if low potassium is involved is to drink several glasses of low-sodium V-8, which is high in potassium. Similar to the kefir and low phosphorous, if low potassium is a problem, usually the low-sodium V-8 will start to help within a few hours.

 

[bradipa]

And when I drank 3 or so glasses of kefir (dairy being high in phosphorous), within a few hours that horrible fatigue began to abate.

Phosphorous helps me a lot, too, Mary. I initially discovered that because when I had a headache, coffee, sweetened or not, usually wouldn't help me, but coca cola did. I actually still have a bottle of coke in my medicine cabinet. But on a daily basis, I do the same you do, consume a lot of kefir.

 

[Mary]

@bradipa - Interesting, I haven't heard of phosphorous helping with headaches before though I have heard of caffeine helping.

I don't drink a lot of kefir regularly. I did drink several glasses after the thiamine initially boosted my energy and then dropped me as if from a great height! I wanted to see if it would help the thiamine-induced severe fatigue, which it did, which confirmed for me that the problem was related to refeeding syndrome and phosphorous.

But I do take a phosphorous supplement daily. And apparently my new supplement was not giving me enough phosphorous.

I have found kefir to be great when my gut is messed up, but I don't drink it daily - it would be too much dairy and also a fair amount of calories . . .

 

[bradipa]

You can supplement that?
I did a little research, admittedly not profound at all, and all I found were bundles for the industry. And the omnipresent warning of too much phosphorous in convenience products...

@bradipa - Interesting, I haven't heard of phosphorous helping with headaches before though I have heard of caffeine helping.

That's the exact same reaction a couple of my friends had at the time. In fact the first time I was offered a coke for my headache it was because they had no coffee (that was in a youth center) and "caffeine helps with headaches". I told them caffeine doesn't help me but took the coke anyways. Then I got better and had everybody saying "I told you caffeine helps".

It helps me only with a certain type of pain, but that always, as long as it doesn't exceed a medium level, and not only in the head but in the body, too. I think it has a bit of an impact on fatigue, too.

I have found kefir to be great when my gut is messed up, but I don't drink it daily - it would be too much dairy and also a fair amount of calories . . .

Well I can use every single calorie. Even though I eat normal portions and changed my diet accordingly, I am always close to underweight.

 

[bradipa]

Has salt tablets made anyone worse with PEM-like symptoms? I'm not talking about increased activity either, just salt by itself. Trying to figure out why I've been doing so poorly lately.

Hi. No, but I can imagine that happening. Is leaving them out for a couple of days to test that an option?

 

[Mary]

You can supplement that?
I did a little research, admittedly not profound at all, and all I found were bundles for the industry. And the omnipresent warning of too much phosphorous in convenience products...

You can. When I first started taking phosphorous several years ago, Swanson Vitamins had a cheap product, I believe it was monosodium phosphate. Then they stopped carrying it. I had to do some digging, but then found this: https://hargravesotc.com/products/s...e-100-packets-by-rugby?variant=39364807000147 which I took for several years. It worked great. It was just a little bit of a hassle dissolving the powder instead of taking a pill. But oh well!

And then I found this some months ago: https://www.amazon.com/dp/B074XQLRT...=&crid=1SASEJN4XXIPT&amp=&sprefix=biotics+pho and it seemed to work great and was easier to take - a couple of pills I could add to my daily regimen. Only now am realizing I wasn't taking enough. This product also has calcium which I have to be very careful with - too much gives me insomnia (!) so I'm going back to the Hargraves product.

When I first started taking potassium in 2010, I was very careful - all those warnings! Yeah - and I think the real problem is that most people probably don't get enough potassium. Anyways ...

Well I can use every single calorie. Even though I eat normal portions and changed my diet accordingly, I am always close to underweight.

And I have the opposite problem!

 

[Mary]

One other symptom I've been having which am only now connecting to low phosphorous is loss of appetite. I haven't been really hungry for breakfast for several weeks, not eating until almost noon, ,and a couple of times skipping breakfast altogether, which is not my normal pattern. But this morning I was really hungry by 9:30, which hasn't happened in quite awhile. The increased hunger apparently is matching my increased energy . . .

I wasn't really losing weight by eating less, because my activity was correspondingly less as well - ya can't win!

 

[Dysfunkion]

I eat a fair amount of salt every day, not sure how much but definitely more than what is normal because I like my sea salty chips too much. I've had times where I had much less though over past months and not much changed so I don't think the sodium I'm taking in is a huge factor with me.

 

[bradipa]

And I have the opposite problem!

Pity we can't just ship those pounds over here!
Over here, the market is widely dominated by some big companies that sell homeopathic stuff, e.g. they sell products that say phosphorus on them, but actually there is none in them. So far I am happy with my Kefir & Co anyway, given that I don't know exactly how my phosphorous level is and what would be the right dosage for substitution.

The increased hunger apparently is matching my increased energy . . .

That's how it should be, no?

 

[cfs since 1998]

It's maddening, isn't it? I just realized you and I have the same "birthday" - both have had ME/CFS since 1998! A birthday I'm sure we'd both rather not share!

Thank you, Mary. Yes, it's maddening that we have the same "birthday". I'll look into the phosphorous and other things you mentioned. My sodium/potassium levels were balanced last I checked without supplementation, so maybe the salt threw off my balance. I do have some potassium chloride in the cupboard. Also I did not experience PEM when I tried electrolyte powder awhile back. Just the straight salt.

Hi. No, but I can imagine that happening. Is leaving them out for a couple of days to test that an option?

Yes, I stopped taking it. With how long PEM lasts, it might take a few months of trial and error to see if there is a cause and effect. But I wanted to see if anyone else experienced this because if they have, I probably won't even try taking it again at all.

 

[bradipa]

Yes, I stopped taking it. With how long PEM lasts, it might take a few months of trial and error to see if there is a cause and effect. But I wanted to see if anyone else experienced this because if they have, I probably won't even try taking it again at all.

That makes sense. I wish I could offer you the answer. Hope you figure it out a lot quicker than a few months.

 

[cfs since 1998]

Klaus Wirth paper
"Potential pathophysiological role of the ion channel TRPM3 in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the therapeutic effect of low-dose naltrexone"

He mentions there could be a "sodium overload". Could high salt intake make us worse then? I don't know enough about biochemistry to answer that myself.

 

[cfs since 1998]

Klaus Wirth paper
"Potential pathophysiological role of the ion channel TRPM3 in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the therapeutic effect of low-dose naltrexone"

He mentions there could be a "sodium overload". Could high salt intake make us worse then? I don't know enough about biochemistry to answer that myself.

I contacted Dr. Wirth and he wrote back. He stated that intramuscular and extracellular sodium are not directly linked, therefore, high sodium intake should not worsen symptoms, but should help symptoms by helping to increase blood volume. However, hypothetically, a large sudden dose of sodium ~could~ increase intramuscular sodium. Therefore, sodium intake should be spread out.

 

[cfs since 1998]

Well, after a one-month break I tried the salt tablets again at a lower dose -- only once a day instead of twice a day. Got PEM again. Seems to be pattern.