The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Hypophosphatemia and low cardiac output, respiratory depression

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Mary, Jul 8, 2016.

  1. Mary

    Mary Senior Member

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    I've been thinking a lot lately about hypophosphatemia. It is the hallmark of refeeding syndrome (in addition to hypokalemia and hypomagnesium), and can cause profound muscular weakness. Based on symptoms caused by a couple of different supplements, and resolution thereof with high-phosphate foods and monosodium phosphate (initial boost in energy followed by severe weakness with B1, B12, and possibly arginine) I think hypophosphatemia may be quite common in people with ME/CFS, only it is rarely diagnosed.

    Also see: http://www.ncbi.nlm.nih.gov/pubmed/9683977

    Foods high in phosphorus include yogurt, kefir and sunflower seeds, all of which have helped me. I can now take B1 without that horrible weakness and was able to increase my B12 as well, which I could not otherwise do. Also, Swanson Vitamins has a product called monosodium phosphate which I've taken in quite small doses as well when needed.

    So here's a wiki article on it: https://en.wikipedia.org/wiki/Hypophosphatemia#Major_signs_and_symptoms

    @Gingergrrl - I was thinking of you and your breathing difficulties and wondered if anyone had checked your phosphate levels.
     
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  2. alex3619

    alex3619 Senior Member

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    This is actually very old in ME research. A percentage of us do benefit from phosphate therapy, and this goes back to 2000 or so. However most of those do not improve unless they also take vitamin D with it, though vitamin D can be problematic for many ME patients. Look up phosphate diabetes ... excessive excretion of phosphate.
     
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  3. Mary

    Mary Senior Member

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    Interesting about the vitamin D connection with phosphate - I didn't know about that. I did link a study about phosphate diabetes and ME/CFS in my post above, so yes this information has been around for awhile. However, it's my impression that very few people or doctors even know about it and that's why I was posting.

    And apart from phosphate diabetes, there is also the issue of refeeding syndrome, which is a separate matter, and which seems to affect many of us when increasing supplements we seem to need a lot like B12 and folate etc. Many of us are on top of our potassium tanking with B12 and folate, but I don't recall anyone talking about phosphorus tanking as well, although it is the hallmark of refeeding syndrome.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @Mary, Stupid question right off the bat LOL but are phosphate and phosphorus the same thing? My Endo checked my phosphorus level in April and it was slightly high (4.9) and the range was 2.9-4.5. However, I am unclear if these two things are related to each other.

    I do not believe I have had an actual test for "phosphate." If I asked my doctor for one, is that the exact name that I would be asking for? When I read the links, it didn't really match with my experience overall but certain parts of it did and I definitely do not want to miss anything that could be relevant.

    I cannot eat yogurt, kefir or anything fermented b/c of my MCAS but I do eat dairy products (milk, organic butter, soft cheeses, etc) with no issues. I have no idea about sunflower seeds in relation to MCAS and have not ever tried them.

    If I tested low in phosphate would this be the only test that is needed to make this diagnosis? I do not tolerate B-12 or Folate in case this is relevant but I do supplement with prescription Potassium and (OTC) Vit D daily.
     
  5. Richard7

    Richard7 Senior Member

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    @Mary I read an article on refeeding syndrome that you linked to on another thread https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

    and noted that they included taking antacids as a concern because they contain magnesium and aluminium salts that bind to phosphate.

    I wonder if this is a problem for those of us who have taken lots of magnesium supplements. The doctor who diagnosed me, Myhill and I am sure many others speak of an increased need for magnesium, some patients taking magnesium injections, and others baths, sprays or tablets. Could the shear quantity be causing phosphate issues?

    I know that when I tried foot baths it seemed to improve my muscles, making them softer at rest, but gave me major head spin way over the top POTS.

    I also tried Freddd's protocol last year to mixed results, I felt like I was in some sense getting better getting a sense of my body and the neural brightening stuff Freddd speaks of, but I was basically prostrate most of the time with really bad POTS.

    So maybe I should read the article you linked to above (in this thread) and have a chat to my GP.
     
  6. Gijs

    Gijs Senior Member

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    Hypophosphatemia in ME/CVS is due to breathing problems like hyperventilation (alkalose). It is a metabolic problem and i think a very importent one! So the question what causes hyperventilation in ME/CVS patiënts. Maybe gram negative bacteria sepsis. I like hear your ideas too, anyone?
     
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  7. Mary

    Mary Senior Member

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    That's not a stupid question! and I may have been using the terms interchangeably. This article explains the difference: http://www.livestrong.com/article/444445-serum-phosphate-vs-phosphorus/ Apparently we ingest phorphorus in our foods and then create phosphate in our bodies with the phosphorous we eat. And Lab Tests Online uses the two terms interchangeably in relation to the test: https://labtestsonline.org/understanding/analytes/phosphorus/tab/test/
    Your level wasn't low so I don't know if any other testing would be warranted - this is a new subject for me and I'm learning about it as I go! :nerd:

    I read that dairy products are one of the best sources of phosphorous, and I don't drink milk but I do eat yogurt and kefir so that's why I Iisted those. Sunflower seeds are also high. You can look up foods that are high phosphorus. But it sounds like your levels are okay, it's good your doctor checked them. I don't think mine have ever been checked. I do have an appointment coming up at the end of the month and will ask about getting a phosphorus test done then.
     
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  8. Mary

    Mary Senior Member

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    That's a very interesting point you make about magnesium binding to phosphate. I too have been taking lots of magnesium for several years. I had Myhill's testing done too (via FedEx) but I also have been taking a lot of magnesium because on hair analysis my levels were always low.

    It seems like it's very possible that the large amount of magnesium could be causing phosphate issues. I am so glad you raised this issue!

    I'm going to ask to have my phosphorous levels checked at the end of the month.

    BTW, did you try adding in potassium when you tried Freddd's protocol? I found that the folate greatly increased my need for potassium, without it I was completely wiped out. I've been taking extra potassium ever since, but phosphorus/phosphate (and its relationship to magnesium) very well could be on more piece of this crazy puzzle!
     
  9. Richard7

    Richard7 Senior Member

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    @Mary yeah I was taking massive amounts of potassium. I cannot really remember how much at this point, but I am now taking 1 tsp or potassium chloride a day, back then I think it might have been 3tsps.

    What I remember is that I would get a sense of vibration that many of us have talked about and take folate or b12 or both or a b complex depending on how the vibration felt, and after a bit of experimenting I was pretty good at stopping the vibration and took .5 tsp potassium chloride whenever I felt palpitations (my symptom that more potassium is due).

    I cannot really remember but was taking whatever other cofactors were recommended. I felt good, relaxed but had really bad POTS and was unable to maintain my diet as I could not stand up for long enough to cook and found myself buying yoghurt or buying bread and making sandwitches both of which seemed to make the POTS worse.
     
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  10. Richard7

    Richard7 Senior Member

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  11. Mary

    Mary Senior Member

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    Interesting - it all gets so complex! I can't stay on top of all this .....

    Has your POTS improved? I think I have a mild version, I can stand for awhile, but after 10 minutes or so feel the need to sit down - I know, a lot better than many on this board! One thing I have done while cooking is to bring a chair into the kitchen and kneel on it while prepping vegies. I can kneel longer than I can stand, so it helps a little. Food preparation is a real issue for many of us - well, everything is, actually, it all takes energy.
     
  12. Richard7

    Richard7 Senior Member

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    Well I stopped the methylation protocol and the POTS got much better. I also found intermittent fasting made it better.

    At the moment I am just taking a couple of tsp salt and 1tsp potassium chloride a day, fast for about 18-20hrs and trying to pay enough attention know when I am struggling and sit down well before I get lightheaded. An attempt at a DIY without a continuous heart rate motitor version of the workwell foundation approach to activity and CFS.

    And yes I have a stool in the kitchen, sometimes I sit on it for the whole time it takes to wash the dishes sometimes I stand the whole time. I am still experimenting, when I had PEM a week or so ago I was sitting to do all the prep for cooking and then stood to stir the pot etc.
     
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  13. rosie26

    rosie26 Senior Member

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    I feel like I have breathed nearly double time in the last 15 years quite a lot of the time. Lungs and heart really get a work out and probably will be the first thing to go for me in the end from wear and tear (?). I try hard to slow things down - not easy to do.
     
  14. ryan31337

    ryan31337 Senior Member

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    Just to expand on what @Gijs said, here's a lay description of the link between hyperventilation/hypocapnia & hypophosphatemia. There are no refs but I don't think anything there is contentious.
    http://www.livestrong.com/article/273319-the-indications-of-low-carbon-dioxide-in-the-blood/

    It's worth clarifying that hyperventilation does not necessarily equate to breathing too quickly. It just means you're breathing too much (excessive volume) for your CO2 production. The part I understand to be contentious is whether or not you can experience this respiratory alkalosis from low CO2 production alone and not some additional factor like anxiety causing you to hyperventilate too. Some seem to take the view that the body would ordinarily reduce your ventilation to a level appropriate for the metabolism, and that only in the presence of forced ventilation (e.g. intubation) could it happen...but I imagine there must be a limit to this adaptation?

    I'm still waiting for my doc's opinion but for ref in tests I had a PETCO2 of 25mmHg (normal range 35-40) with no obvious signs of tachypnea or hyperpnea. The levels really crashed after a forced hyperventilation test and then took an abnormal amount of time to get back to 25mmHg again. This could explain a lot about my muddled mental state when you consider the following:
    "Cerebral blood flow (CBF) decreases quite markedly with hypocapnia: a decrease of 4% per mmHg reduction in pCO2. For example, an acute drop in pCO2 from 40 down to 25mmHg will decrease CBF by about 60%." :ill:
     
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  15. Gijs

    Gijs Senior Member

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    Very interesting ryan3137 :) Exactly what they found in POTS and some ME patiënts with bloodflow problems. This is a specific subgroup of patiënts. The breathing problems are due to bloodflow problems to the brain (and filling poblems in the heart). I think the bloodvessels are the problem.
     

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