Low energy, low mood? Phosphorous might be key (hypophosphotemia may be triggered by thiamine - refeeding syndrome)

[lenora]

Hi, so what your saying is that our diets are particularly bad. Interesting, b/c when I'm feeling particularly bad, all I want is something I crave...for e.g. right now chicken soup & soda crackers....that's it. I force myself to eat well rounded things like salads with lots of good things in them and meals that my husband prepares. But it's always forcing & I don't know how we end up in this anorexic mode.

I have stomach issues, so that's probably the beginning, then you add upsetting the intestinal flora, the stomach getting used to being smaller, etc., and you have what is essentially anorexia. I've also balanced vitamins & supplements for years and have found just lately that they've led me to overdoing it in one area and underdoing it in the other. Now I'm just taking an all-around balance vitamin once/day and the others perhaps 2-3 times/wk. I needed them at one time, I'll be the first to say, but perhaps that need doesn't continue as we go through this spiral.

If we could eat normally, then we may be able to balance our bodies ourselves. It's just a thought!! Now I'm going to one of my doctors today, I'm dressed and my pants feel somewhat tight. Interesting, as I had been down to about no size at all. So on this insane diet, I'm gaining weight & bloat, but I am taking a diuretic to help with the salt being held.

Interestingly enough I was hospitalized for low sodium that was bringing on the loss of my l. eye vision, crossing to the r. eye and loss of my l. leg during one night. So I was filled up with sodium and was told to take it, in spite of the fact that I have very high BP in the late afternoon and night, and low in the a.m. One doesn't know who to believe and what regimen to follow. I'm getting very weary of it all. I want to return to normal eating, but the nausea is pretty bad at the moment. As before, I'll start with good, fresh things that I like and will work up from there.

Interesting read about phosphorous. Thank-you. Yours, Lenora

 

[Mary]

@ZeroGravitas - no weight loss for me with phosphate supplementation (unfortunately!) Though low phosphate made me so tired, I could see if someone's energy suddenly increased with phosphate supplementation that they might become more active and thus lose weight.

I've still been unable to ramp up my m. phosphate back up past 350mg, without getting sore throat and then mild fever.

So taking more than 350 mg. of monosodium phosphate causes a sore throat and mild fever for you? Thinking of Prusty's paper where he said that people with ME/CFS were too weak to support a flu virus - our cells lacked the nutrients necessary to support the flu - I wonder if loading with phosphate provides the nutrients for some type of pathogen - flu or otherwise - to flourish?

 

[ZeroGravitas]

I wonder if loading with phosphate provides the nutrients for some type of pathogen - flu or otherwise - to flourish?

Right. It seemed like some virus already in me was reactivated and then passed on(?!). That or I caught my first cold in a decade at a very co-incidental time (when I only ever pop to Sainsbury's and my parents had been super-social by comparison)...

I don't know anything about cold viruses going latent like that, though. Don't remember seeing any in Prusty's lists of herpes viruses, etc, (I need to take a closer look some time).

 

[Learner1]

I have the exact (!) same issues, intermittently my calcium in blood was high though, but the the low phosphate in urine is the same, I also had a kidney stone 3 months ago, I am very severe me/cfs,... do you feel better with the phosphate supplement?

Have you looked into oxalates? Most kidney stones are caused by them. They create oxidative stress, which can promote fatigue, deplete minerals, deplete b6, deplete sulfur, and cause depositions in kidneys and other organs, as well as muscles and joints, which can cause pain.

The following gave me next day fatigue reactions a lot like a food intolerance reaction (but generally without the IBS component): Bone broth (or long stewed meat), gelatin (I still stick to vegi capsule shells), hydrolysed collagen, glutamine, cysteine, NAC, lysine, glycine(!). Don't think I ever figured out these mysteries...

Those particular foods can cause endogenous oxalate production, which can cause osteoporosis, deplete minerals, etcetera.

you'll avoid a pill dissolving slowly on the outer edges of your stomach and burning a hole in it ..

Do you have a scientific reference for that?

taking more than 350 mg. of monosodium phosphate causes a sore throat and mild fever for you? Thinking of Prusty's paper where he said that people with ME/CFS were too weak to support a flu virus - our cells lacked the nutrients necessary to support the flu - I wonder if loading with phosphate provides the nutrients for some type of pathogen - flu or otherwise - to flourish?

Having read through this entire thread, I would guess that this could contribute to low ATP production and recycling. Adding the phosphate could have the effect of increasing ATP production, which would then give the immune system more juice to work with. I really suspect that most people's " not being sick " is really their immune system not functioning well enough to make them feel sick. I wasn't sick for about 3 years, yet I had 5 chronic viruses and 2 atypical pneumonia is going on that I wasn't aware of.

@ZeroGravitas I think Your investigation into mitochondrial metabolism is likely very worthwhile.

 

[Mary]

The following gave me next day fatigue reactions a lot like a food intolerance reaction (but generally without the IBS component): Bone broth (or long stewed meat), gelatin (I still stick to vegi capsule shells), hydrolysed collagen, glutamine, cysteine, NAC, lysine, glycine(!). Don't think I ever figured out these mysteries... (Mthyl-B9 also wore me down progressively.)

@ZeroGravitas - The bone broth, gelatin, collagen and glycine all could have been causing a detox reaction for you. Several years ago I had a very strong detox reaction to glycine - it made me feel like I'd been hit by a truck, and I also got very spacey. Gelatin did the same - it's high in glycine and bone broth is also high in glycine. It's a long story but muscle testing indicated that the glycine was actually good for me, but that I had to start with a very small dose, which I did. I was able to very gradually increase it over a period of some 6 months and at the end of that time, my detoxing reaction stopped. I then learned that glycine is important for Phase II liver detoxification. Before doing this, I used to have detox reactions to various substances - anything that said it was "cleansing" - several times a month. Since doing this (close to 5 years ago I think) I've had only a couple of detox reactions.

Glutamine also caused a detox reaction for me, as well as inositol, but not nearly as strong as the glycine. I had started the glycine, glutamine and inositol all around the same time. Anyways, I cut the doses of those and kept taking them and the same thing happened - they stopped causing a detox. I found out that glutamine and inositol were also needed for Phase II liver detoxification (as well as several other nutrients).

Also, the bone broth and collagen are high in glutamine (again, caused detoxing for me) and many people have trouble with glutamine causing brain excitotoxicity.

And the NAC is involved in detox reactions.

I think it's very likely you were having some sort of detox reaction to these substances. How to find out? Muscle testing worked for me. My chiropractor who does muscle testing was the first one to point out that my liver had problems with toxicity - this was close to 20 years ago. I'd had no idea why I was feeling crappy- fluish, tired, digestion was off. I ended up doing a liver detox under his supervision and my digesetion improved a lot (I'd had heavy exposure to chemical solvents at a job when I was 19). But I still kept having detox reactions. And then my glycine experience I wrote about above really seemed to finally get my detox pathways working properly.

 

[ZeroGravitas]

Those particular foods can cause endogenous oxalate production

Thanks for coming to take at look at this thread, @Learner1. Do you have any good link to hand explaining endogenous oxalate production? (Certainly interesting on multiple fronts, for me - osteoporosis, oxidative stress, I've even often noted cloudy urine, but no idea if that's necessarily related.)

Adding the phosphate could have the effect of increasing ATP production

That's gotta be the presumption, given it's backbone role in these processes...

I also wondered if me taking 10g/day of D-Ribose might contribute to flushing phosphate through (as it's required to make ATP, but it generally pressumed to not be a limiting factor).

which would then give the immune system more juice to work with

That's kinda what I'm assuming, roughly. That I'd not been able to fever without more phosphate. The reverse seems true - phosphorus is depleted more by higher fever temperatures:

"Fever as a Cause of Hypophosphatemia in Patients with Malaria" [NCBI 2007].

I wonder if that could be a main factor in pwME/CFS not fevering despite all other Covid symptoms (and subsequently struggling longer to recover, anecdotally).

I then learned that glycine is important for Phase II liver detoxification.

Right. I've started talking about this with Learner1 a fair bit too. Literally all the Phase 2 substrates have caused me next day fatigue/crash. And I've usually had slightly above normal range ALT (liver damage proteins) in my NHS bloods. (Never enough to pursue.)



Certainly trying slow introduction of glycine is something for me to add to my list of stuff to try. I'm wondering about Phase 3 support, too, which seems less explicitly talked about... (Definitely getting back to new thread teritory, although everything is connected, eh...)

 

[YippeeKi YOW !!]

Do you have a scientific reference for that?

It's one of the reasons that you can only get potassium in pill form in 99 mg strength. It was determined that that amount, even if it settled on the stomach lining, wouldn;t cause extensive or permanent damage. It's a pretty well-known fact, but I don;t have the strength or time to do a google search to dig up a reference that you'd accept without further challenge.

 

[ZeroGravitas]

This recent paper from Anna Dorothea Höck, that I saw Tweeted here, mentions phosphate deficiency, in the context of proposing that vitamin D status might determine whether mild ME/CFS progresses towards severe (also discusses Nrf2 and a whole bunch of other things):

Phosphate deficiency through long-standing vitamin D deficiency should be considered as well.

Anyone have an idea of whether certain supplements might flush through phosphorus faster, too? I thought of D-Ribose because (I think) that forms the backbone of ATP, but the phosphate units are seperate, and if whole ATP molecules are being lost from cells/body, then one would need to replenish that phosphate component, too...

I also wondered if me taking 10g/day of D-Ribose might contribute to flushing phosphate through

Personal tangential update: I finally had my rheumatologist follow-up phone appointment (extra delayed by Covid situation). It was pointless, as he wouldn't even explicitly confirm the lab ranges for (my low) phosphate excretion. He also suggested maybe just leaving investigation of the osteoporosis alone! He was mostly interested in if I'd had a fracture, yet, which would apparently make the situation worst. I'm hopefully being forwarded to a bone specialist, maybe by the end of this year...

A simple test which may help determine this is to dissolve 1/2 teaspoon baking soda in 8 ounces of water and drink on an empty stomach.

I finally got around to trying this. As suggested, took 1/2 teaspoon bicarbonate of soda powder with 200ml water, on empty stomach before cooking diner (so I was hungry and acid should be ready).

I had 3 medium sized burps, the first halfway through drinking the water in big sips, over ~3 minutes. 15 min after last burp I took my digestive supplement and had a couple more burps.

So clearly I have stomach acid, although maybe only a modest amount?


Also, I succeeded in re-gaining the 1.5kg I'd unexpectedly lost earlier in the year, doubling up my meat intake on 2 out of 3 days, while reducing root and high oxalate veg accordingly. So CronOmeter shows me spot on the RDA for protein, now, which had been a little bit low, overall, before.

I tried adding more potasium, to compensate the veg loss, but it seemed to reduce my energy, beyond a tiny amount (3x 100mg capsules, citrate form). If it was competing with the calcium supplement, and reducing their effect, I don't know (increasing from 3 to 4 calcium citrate capsules badly disrupted my sleep, making me feel too hot, too). Or maybe it was the P5P (B6) I happened to try introducing while titrating the potassium citrate. Unsure.

 

[lenora]

Zero Gravitas....I'm sorry that your rheumatologist was so clueless.

Since you didn't like him, I wouldn't bother going back to him. As they say..."You may have to kiss a lot of frogs before you find a prince/princess." But you will and you'll know for sure by the 3rd visit.

I'm sorry things ended this way, but I have a feeling a Naturopathic Dr. may be your best bet at the moment. Ask him if he has worked with ME patients and, if possible, get some references. It's worth a try, isn't it. Read every single Review and go from there.

I don't know what your bone trouble is or why, but the one and only difference between osteopenia and osteoporis is one thing: A broken bone. When you've broken an impt. one, it is then called osteoporosis. I think the results are useless and I've been having them done for years upon years. I do take Fosamax, had 10 bad falls this year but didn't break anything. Was I sore, yes, but I'm fine.

Mary appears to have the answer to the rest of your question...she knows a lot! I wish you well. Yours, Lenora

 

[Mary]

Anyone have an idea of whether certain supplements might flush through phosphorus faster, too? I thought of D-Ribose because (I think) that forms the backbone of ATP, but the phosphate units are seperate, and if whole ATP molecules are being lost from cells/body, then one would need to replenish that phosphate component, too...

I took d-ribose for 15 years and it never caused my phosphate to be depleted, going by symptoms. I never suffered extra fatigue or other symptoms of low phosphorous after taking d-ribose. I've recently mostly stopped the d-ribose mainly because I don't seem to need it any more, after taking Cellfood for close to 4 months.

The only thing I'm aware of that caused my phosphate to tank was B1 - thiamine - from refeeding syndrome. It was hard to miss - very severe fatigue - and later I correlated a few other symptoms, difficulty swallowing pills which only happened intermittently and double vision at night.

 

[dreamydays]

Really good thread, I am working on a high dose thiamine (TTFD) trial, which needs co-factors, magnesium, copper and phosphorus. It looks like the swanson supplement is the cleanest way to supplement phosphorus but I also found a good hemp seed powder in the UK (link), which looks like it would do the trick.

 

[Learner1]

Really good thread, I am working on a high dose thiamine (TTFD) trial, which needs co-factors, magnesium, copper and phosphorus. It looks like the swanson supplement is the cleanest way to supplement phosphorus but I also found a good hemp seed powder in the UK (link), which looks like it would do the trick.

What TTFD supplement do you use and what dose? I've been taking 750mg benfotiamine, but no one can tell me what the equivalent dose would be of TTFD.

 

[dreamydays]

Hi Learner, There are two makes available Allithiamine or Thiamax https://www.objectivenutrients.com/products/thiamax
Thiamax is produced by Elliot Overton who has produced some excellent youtube videos about Thiamine deficiency based on the work of Derrick Lonsdale and Chandler Marrs

Here is a long interview with Dr Marrs about the forms

Its all based on the book

I have not read the book yet but I am taking 1g x daily, but in terms of cost, I will have to find a wholesale supplier.

Benfotiamine I take occasionally and it works, but you can see that most people need TTFD as it gets in the brain

I know that its helping me as it calms my neuropathic pain and nothing else has helped (4g Thiamine or 1g Benfo does work but TTFD is stronger.)

 

[Judee]

So yesterday or the day before I was doing research and came across a disorder that sounded so much like ME/CFS even to the PEM after exertion but it had to do with a defect in processing phosphorus and how it affects glucose metabolism and the muscles.

Arrggh. I was going to come here and post but for some reason didn't and now I cannot find the name of that. It started with M and may have started with Mc or Mac. I've even looked down a list of similar names to see if it will trigger my memory as well as searching for phosphorus disorders but that only brings up hyper and hypo info. I went into several websites on diseases and it's not there either.

Hoping someone knows the name of that disease. If I run across it again I will try harder to come back here and post about it.

 

[YippeeKi YOW !!]

It started with M and may have started with Mc or Mac.

Could it be McArdle's Disease? It was the 'Mc' that helped get to the solution ....

If that rings a bell, here's a link, tho not sure if it's the one your looking for.

https://www.cedars-sinai.org/health-library/diseases-and-conditions/m/mcardle-disease.html

 

[pamojja]

I know that its helping me as it calms my neuropathic pain and nothing else has helped (4g Thiamine or 1g Benfo does work but TTFD is stronger.)

Did you really mean 100mg of the TTFD product you linked to is stronger than 4g Thiamine or 1g Bendotiamine?

 

[Judee]

Could it be McArdle's Disease? It was the 'Mc' that helped get to the solution ....

Yesssss...Thank you so much, @YippeeKi YOW !! I would have been racking my brain and fighting OCD to keep searching the internet for that name. Thank you for the link as well. That's where I found it the other day too.

Looking at the disease description and treatments makes me wonder if some of us could have a degree of genetic overlap of some kind with this disease.

I did also read (again, can't find it ) where high IL-6 and Tumor necrosis factor has an inverse relationship to phosphorus levels. I know that I have one gene that pre-disposes me to high IL-6 levels.

Anyway, thanks again, @YippeeKi YOW !!

 

[YippeeKi YOW !!]

Yesssss...Thank you so much, @YippeeKi YOW !! I would have been racking my brain and fighting OCD to keep searching the internet for that name.

Oh, Judee, you're so welcome .....

This could be fascinating and even liberating news to a few of the members here who are baffled by where their ME came from, ie, no history of EBV, no recent viral thingies, etc .... really good post and information !!!!

 

[dreamydays]

Did you really mean 100mg of the TTFD product you linked to is stronger than 4g Thiamine or 1g Bendotiamine?

No absolutely not, if you watch the video it explains the differences. I said myself I take 1g TTFD. In terms of direct bioavailability my understanding is that TTFD is slightly more bioavailable into the blood stream due to it not requiring transporters. And in addition it passes into cells without transporters so there is no rate limiting element. Also the main thing is that it passes through the blood brain barrier, so increases thiamine in the brain and nervous system. I am not affiliated with this in any way. The two youtube videos go into detail and Dr Marrs talks about it in detail. When I am well enough I will read the book. Benfotiamine is great and more affordable, so much better than thiamine. I would say that the dose equivalent to 1g benfo is about 750mg TTFD, but that doesn't take into account the uptake and central nervous action. I think it will be more beneficial for some than others. Especially with Dysautonomia. I would watch the videos, they aren't biased in my opinion especially Dr Marrs.

 

[Mary]

Could it be McArdle's Disease? It was the 'Mc' that helped get to the solution ....

If that rings a bell, here's a link, tho not sure if it's the one your looking for.

https://www.cedars-sinai.org/health-library/diseases-and-conditions/m/mcardle-disease.html

Good find @YippeeKi YOW !! ! An interesting feature of McArdle's Disease contained in that link is:

Better able to do aerobic exercise after 8 to 10 minutes (second-wind phenomenon)

I think this is the opposite of most of us, but very well could apply to some of us!