PEM and why women get CFS more often than men

[Mary]

@Mary I looked at the thread but it seemed to be about MTHFR and folate and the second was about exercise.

Is it possible to explain to me in a dumbed down version what you mean re: using baking soda? I have no familiarity with this at all. Do you mean like an Epsom salt bath or a supplement or some other form?

What specifically does it do and when you use the word PEM are you just referring to muscle pain for people who exercise or something else? I am at much, much lower level of functioning so not sure if this pertains to me?

Gingergirrl -yes, a lot of the thread is about MTHFR and folate. But if you look at pone's post near the bottom of the page that I linked above, you will see him talking about baking soda and PEM (page 3 of the thread, near the bottom - http://forums.phoenixrising.me/index.php?threads/methylfolate-and-mercury-detoxing.30967/page-3). He talks about how to use the baking soda. So read that post and the following ones which talk about using baking soda. It's not an Epsom salt bath. The supplement is baking soda.

I don't know if this would pertain to you. From what I read you do have a very low level of functioning so I don't know if this would help you. All I can say is read pone's posts, see if they make sense, and maybe try it.

From what I understand, for some of us at least, PEM is caused by glycolysis metabolism which creates a lot of lactic acid. The baking soda draws the excess lactic acid out of the cells and neutralizes it, thus ending the PEM symptoms. I think this is what happens, though of course I could be wrong. Anyways, the baking soda helped my PEM end much quicker than usual.

We don't have a standard measure of PEM so I don't know if we all talk about the same thing when we talk about PEM. I thought pone was talking about something different than I experience, but after reading his posts I decided to give the baking soda a try - 1/2 teaspoon in water on an EMPTY stomach - it neutralizes stomach acid so will screw up your stomach if you try to eat shortly thereafter. I wait about an hour before eating and am fine.

Also, as I posted elsewhere, the baking soda seems to increase my need for potassium. Adreno suggested that potassium bicarbonate could solve this problem - he might be right, something else to check out.; In any event, I needed a lot more potassium after taking baking soda.

Pone said he also has mental impairment with PEM. I don't. I just have muscle aches and a complete loss of energy. But, the baking soda helped me as well as him. Again I don't know if it will help you.

You might look into some of the measuring things he recommends - Ph paper to measure acidity (in theory, one would take baking soda when one was acidic) and also the conductivity meter he talks about, to measure hydration. For you especially I think these might be important because of all of your issues.

 

[Mary]

Baking soda is sodium bicarbonate. It's an alkalizer. You mix with water and drink it. If you tend to suffer high acidity (acidosis), it might help. But I'm generally not a fan as it will neutralize your stomach acid. When I tried it I got symptoms of alkalosis. It also gave me nausea and reflux.

Did you take it on an empty stomach? Yes, it neutralizes stomach acid so it's important to take on an empty stomach away from food.

Actually there's the baking soda "burp" test to test one's stomach acid. Drink 1/2 teaspoon baking soda in 8 oz of water on an empty stomach. If you don't burp within 2 minutes it means your stomach acid is low and you should take HCL with meals. Based on this , my stomach acid appears to be pretty good. Several years ago it was deficient. I don't know why it's better now.

 

[Mary]

@adreno how would someone know if they suffer from high acidity? I don't think I have ever been tested for this. Is it a blood test or urine test (or neither?)

Get some Ph paper or strips from your health food store or on-line. They will give you a picture of your acid/alkaline level at that time.

I'm sure it would be good for anyone who was going to try using baking soda to help with PEM, to use the Ph test paper first to see if you're acidic. I didn't have any Ph paper when I first used it when I was crashed, but it definitely helped end my crash. And fortunately (or unfortunately?) I haven't crashed since. I've been using Kimsie's recommendations for resting which have helped me to accomplish things without crashing. Earlier today my Ph showed a little bit acidic and I was going out to visit for Christmas so I took one dose of baking soda - on an empty stomach of course - and I did okay. Also have taken a good dose of potassium today, both low-sodium V8 (900 mg. in an 8 oz. glass) and some potassium gluconate capsules. Will see how I do tomorrow, that will be the acid test (no pun intended!) But so far so good--

Gingergrrl - because of your wildly fluctuating pulse and BP etc., it might be good for you to get a conductivity meter that pone references in his posts linked above, it might help you stay on top of your electrolyte situation.

 

[adreno]

Did you take it on an empty stomach? Yes, it neutralizes stomach acid so it's important to take on an empty stomach away from food.

I'm not really interested in baking soda as a treatment. However, as kimsie says, if alkalizing helps PEM, then this tells us something about the pathophysiology of ME/CFS. There are biochemically different ways of reducing lactate, which I think are better than taking baking soda. That said, using it as an emergency measure when we have overdone things might be ok (in small doses), or simply as a test to see if we are hyper-acidic.

 

[taniaaust1]

I've tried potassium bicarb in the past and developed alkalosis. I wasn't sure if I was going to survive for about 12 hours. Another problem with oral bicarb supplementation is that alkalising your gut is bad as it will worsen dysbiosis including candida issues.

Ive had abnormally low anion gap results .. so in my case maybe bicarb bad for me. (Ive also had abnormally high chloride come up on a blood test result).

"
Low anion gap[edit]
A low anion gap is frequently caused by hypoalbuminemia. Albumin is a negatively charged protein and its loss from the serum results in the retention of other negatively charged ions such as chloride and bicarbonate. As bicarbonate and chloride anions are used to calculate the anion gap, there is a subsequent decrease in the gap.
" http://en.wikipedia.org/wiki/Anion_gap

 

[MeSci]

Or you could just take potassium bicarbonate.

Maybe check first whether you are prone to low potassium. I've been using sodium bicarbonate for two and half years and never had low potassium - it's always tested normal or high.

I don't know whether sodium bicarb lessens PEM, but I have got worse both times I tried stopping it (weakness, insomnia, headache, digestive dysfunction, nausea, brain fog, etc.). I take about 8-10 grams a day in water, divided into 4 doses.

 

[MeSci]

I've tried potassium bicarb in the past and developed alkalosis. I wasn't sure if I was going to survive for about 12 hours. Another problem with oral bicarb supplementation is that alkalising your gut is bad as it will worsen dysbiosis including candida issues.

Did you have your blood sodium levels tested? Some of us seem to be prone to low sodium, which can be very dangerous (as I know from experience). However, I recently found that my severe episodes of low sodium (hyponatraemia) may have been (mostly?) due to an inappropriate prescription for an ACE inhibitor, which increase sodium excretion (and potassium retention).

Whether bicarb helps or harms your digestion may be partly due to dietary differences. If you consume a lot of meat or protein, you may need a lot of stomach acid. If you are a vegan, you may need much less.

 

[Sidereal]

Did you have your blood sodium levels tested? Some of us seem to be prone to low sodium, which can be very dangerous (as I know from experience). However, I recently found that my severe episodes of low sodium (hyponatraemia) may have been (mostly?) due to an inappropriate prescription for an ACE inhibitor, which increase sodium excretion (and potassium retention).

Whether bicarb helps or harms your digestion may be partly due to dietary differences. If you consume a lot of meat or protein, you may need a lot of stomach acid. If you are a vegan, you may need much less.

My sodium levels have inched upwards since my latest relapse in 2012. They used to be right in the middle of the range whereas now they hover around the top of the normal range. Hypokalemia on the other hand is a big problem for me and has landed me in near death situations a number of times... the sorts of episodes you've had with hyponatremia. Doctors have been entirely useless of course. Actually, worse than useless since one even put me on steroids which of course is going to lead to even worse sodium retention and potassium wasting.

Regarding digestion, I was referring to the bowel where a lower pH (i.e. more acidic conditions) is desirable.

Ive had abnormally low anion gap results .. so in my case maybe bicarb bad for me. (Ive also had abnormally high chloride come up on a blood test result)

Yeah, I've had high chloride pop up on blood tests too sometimes.

 

[MeSci]

Ive had abnormally low anion gap results .. so in my case maybe bicarb bad for me. (Ive also had abnormally high chloride come up on a blood test result).

"
Low anion gap[edit]
A low anion gap is frequently caused by hypoalbuminemia. Albumin is a negatively charged protein and its loss from the serum results in the retention of other negatively charged ions such as chloride and bicarbonate. As bicarbonate and chloride anions are used to calculate the anion gap, there is a subsequent decrease in the gap.
" http://en.wikipedia.org/wiki/Anion_gap

My albumin always tests near the top of the scale - sometimes over. I had low blood bicarbonate when I was in hospital with severe hyponatraemia (low blood sodium).

I don't think that anion gap always correlates with acidosis or alkalosis.

There are other threads referring to sodium bicarbonate, acidosis and anion gap, e.g.:

http://forums.phoenixrising.me/inde...s-and-my-bp-went-up-a-tad-and-sjogrens.23477/

http://forums.phoenixrising.me/index.php?threads/dealing-with-cfs-as-metabolic-acidosis.30541/

http://forums.phoenixrising.me/inde...-the-same-symptoms-as-d-lactic-acidosis.8159/

 

[MeSci]

My sodium levels have inched upwards since my latest relapse in 2012. They used to be right in the middle of the range whereas now they hover around the top of the normal range. Hypokalemia on the other hand is a big problem for me and has landed me in near death situations a number of times... the sorts of episodes you've had with hyponatremia. Doctors have been entirely useless of course. Actually, worse than useless since one even put me on steroids which of course is going to lead to even worse sodium retention and potassium wasting.

Oh dear - I had the same problem. I had doctors disbelieving me, neglecting me, misdiagnosing me, accusing me, insulting me and giving me the wrong treatments. And they all failed to identify the probable cause - the ACE inhibitor, which I had started not long before the first episode.

But it appears that little or no advice is given to doctors (at least in the UK) about ACE inhibitors increasing sodium excretion, despite the fact that this is a property of the drugs which has been known about since at least the 1990s!

(I can't help wondering whether the drug companies downplayed/failed to mention the risk when they were seeking licences.)

 

[Sidereal]

Oh dear - I had the same problem. I had doctors disbelieving me, neglecting me, misdiagnosing me, accusing me, insulting me and giving me the wrong treatments. And they all failed to identify the probable cause - the ACE inhibitor, which I had started not long before the first episode.

But it appears that little or no advice is given to doctors (at least in the UK) about ACE inhibitors increasing sodium excretion, despite the fact that this is a property of the drugs which has been known about since at least the 1990s!

(I can't help wondering whether the drug companies downplayed/failed to mention the risk when they were seeking licences.)

In my experience, GPs know very little about metabolism. I get blank stares when I bring up issues like this.

 

[Kimsie]

@Kimsie I tested low in lactate on my OAT. 4.6 (ref range 10-100)

Do you remember if you were having PEM a lot at the time?

Gingergrrl, it might be called lactic acid. It would probably be on a comprehensive test, I don't think you would see it as a stand alone test.

Has anyone here tried a ketogenic diet? How did you feel on the diet and how long were you on it? Did you crash or did it help with crashing? If you were on a low carb diet, how many grams of carb each day and how did you feel? I am just trying to gather some data.

 

[Mij]

@Kimsie no I was not experiencing PEM at the time of testing.

edit: I should add that during that period of time (11yrs ago) I was running. I'd like to forget that I ever did.

 

[MeSci]

Has anyone here tried a ketogenic diet? How did you feel on the diet and how long were you on it? Did you crash or did it help with crashing? If you were on a low carb diet, how many grams of carb each day and how did you feel? I am just trying to gather some data.

Quite a lot of people here have been limiting carbs in some form, myself included.

There are threads on ketogenic diets here:

http://forums.phoenixrising.me/index.php?threads/possible-benefits-of-a-ketogenic-diet.26505/

http://forums.phoenixrising.me/inde...-for-me-rationale-evidence-experiences.20525/

http://forums.phoenixrising.me/inde...-used-to-treat-diverse-neuro-disorders.20523/

Personally I think that we need some good fibre/resistant starch in order to create/sustain the right microbiota.

 

[Kimsie]

@Kimsie no I was not experiencing PEM at the time of testing.

edit: I should add that during that period of time (11yrs ago) I was running. I'd like to forget that I ever did.

OK, thanks, then so far the hypothesis about PEM being related to lactic acid holds.

 

[Kimsie]

Quite a lot of people here have been limiting carbs in some form, myself included.

There are threads on ketogenic diets here:

http://forums.phoenixrising.me/index.php?threads/possible-benefits-of-a-ketogenic-diet.26505/

http://forums.phoenixrising.me/inde...-for-me-rationale-evidence-experiences.20525/

http://forums.phoenixrising.me/inde...-used-to-treat-diverse-neuro-disorders.20523/

Personally I think that we need some good fibre/resistant starch in order to create/sustain the right microbiota.

Thanks for the links. I checked them out but the information that people give in those threads doesn't answer my specific questions, especially about PEM, so it isn't very helpful to me.

 

[taniaaust1]

Do you remember if you were having PEM a lot at the time?

Gingergrrl, it might be called lactic acid. It would probably be on a comprehensive test, I don't think you would see it as a stand alone test.

Has anyone here tried a ketogenic diet? How did you feel on the diet and how long were you on it? Did you crash or did it help with crashing? If you were on a low carb diet, how many grams of carb each day and how did you feel? I am just trying to gather some data.

Ive been on that kind of diet for a while .. Atkin's diet (not sure if I spelt it right). In this diet one stays below 15g carbs daily at first.. This kind of diet does help me but then I have PCOS and insulin (hyperinsulinemia) issues on top of the ME/CFS. The normal diabetic diets are way too high in carbs for me and give make my ME/CFS worst eg more sore throats, more morning tiredness, severe mood swings etc etc if I have too many carbs.

ME/CFS specialist Dr Sarah Myhill recommends low carb diet to her ME/CFS patients.

From what Ive noticed over the years from those who have ME/CFS, is most of us do have dietary issues there which we do find out we have sooner or later, thing is we tend to have all different ones. Some will lactose, some gluten sensitivity, up to 50% with ME/CFS have fructose issues, others need low carb etc etc. It simply isnt one size fits all. Generally thou, artificial sweeteners, I think our patient group should avoid those.