New Symptom - Bulging Veins?!
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Gondwanaland
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Protein breakdown generates ammonia
JaimeS
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I'm taking Copper and Zinc in my antioxidant blend already. 
I'll have to take a closer look at the ratio, but I remember glancing at it and thinking it looked good...
-J
I'll have to take a closer look at the ratio, but I remember glancing at it and thinking it looked good...-J
JaimeS
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I'm doing much better after resuming the Co-Q10, but the weather has also normalized. In two or three more days, it's gonna spike up again in my area, though.
I never imagined looking at a weather report that said it was going to be sunny and warm could cause this much dread.
#movingtothearctic
-J
I never imagined looking at a weather report that said it was going to be sunny and warm could cause this much dread.
#movingtothearctic
-J
Gondwanaland
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Is your diet or supplementation high in fat? I seem to be much more humidity-sensitive when I have high fat meals. Fat causes uric acid retention, as I mentioned before.
JaimeS
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@Gondwanaland - Again, the pH of the pee would be pretty indicative of high uric acid levels, right? Yours is quite low? The pH of my pee is not low.
I have little tolerance for fats (low lipase, I'm guessing) and this has been true for most of my life. Using caloriecount, I find I get almost exactly the same number of grams of fat every day (within 3 or 4 grams), which shows that I self-regulate to avoid eating too much fat.
Lactic = what I have evidence for at this point.
-J
I have little tolerance for fats (low lipase, I'm guessing) and this has been true for most of my life. Using caloriecount, I find I get almost exactly the same number of grams of fat every day (within 3 or 4 grams), which shows that I self-regulate to avoid eating too much fat.
Lactic = what I have evidence for at this point.
-J
Gondwanaland
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Yes! Interesting!
JaimeS
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You know what else is interesting?
At least one person (Yasmina Ykelenstam) has associated this with mast cell disorders. Since that was not the topic of this thread, I'll continue here, where they're talking about mast cells.
I'm exploring the idea that nighttime is simply when all my supplements wear off. I take Vinpocetine, but that's a vasodilator, at least theoretically, so if anything it should be causing blood pooling, not causing blood pooling once it wears off. In fact, I took it and any other pills that aren't excitatory (so can be taken in the PM)... aaand my hands are back to normal in five minutes.
-J
At least one person (Yasmina Ykelenstam) has associated this with mast cell disorders. Since that was not the topic of this thread, I'll continue here, where they're talking about mast cells.
I'm exploring the idea that nighttime is simply when all my supplements wear off. I take Vinpocetine, but that's a vasodilator, at least theoretically, so if anything it should be causing blood pooling, not causing blood pooling once it wears off. In fact, I took it and any other pills that aren't excitatory (so can be taken in the PM)... aaand my hands are back to normal in five minutes.
-J
JaimeS
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@Gondwanaland -
...uh, re-did the pH strips and it was maybe 4? (That's how low the pH strip measured.)
Doc poo-poo'd me and said that was 'totally normal'.
-J
...uh, re-did the pH strips and it was maybe 4? (That's how low the pH strip measured.)
Doc poo-poo'd me and said that was 'totally normal'.
-J
Gondwanaland
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I would consider 5.5 in the morning acceptable. In the evening definetely too low. 4 is even out of the lax lab ranges.
I am filling the bathtub right now for my weekly bicarb soak. My joints are craving it!
I am filling the bathtub right now for my weekly bicarb soak. My joints are craving it!
Gondwanaland
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EVERYthing is mast cell disorder for her.
http://thelowhistaminechef.com/the-rosacea-histamine-mast-cell-connection/
read the comments first
JaimeS
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@Gondwanaland -
....it wasn't the morning.
As far as YY goes, yeah, I get that it's her thang. But what it comes down to is saying "it's all inflammation", and that's true for certain values of true. I certainly feel better on antioxidants.
still, always. Salt. Grain. Take with.
<3 J
....it wasn't the morning.
As far as YY goes, yeah, I get that it's her thang. But what it comes down to is saying "it's all inflammation", and that's true for certain values of true.
I certainly feel better on antioxidants.still, always. Salt. Grain. Take with.
<3 J
I'm confused as to why you think you have elevated lactic acid and metabolic acidosis. Did you have this from a blood test?
The first step toward figuring out if you have metabolic acidosis would be looking at some very common bloodwork. What is the CO2 level? That is generally reduced in metabolic acidosis. The next thing is to look at the anion gap. This is usually with the electrolytes. If it is not there you can calculate it yourself - it's just cations minus anions from the electrolyte panel (monovalent). So it's basically Na+ + K+ - Cl- - HCO3- = anion gap. (Some people include the K+, and some do not, just make sure the reference ranges you use are based on the same inclusion or exclusion of K+.) CO2 in the blood is actually found mostly as HCO3-, which is why it's a monovalent anion (OH- from water combines with CO2 to form HCO3-).
The anion gap represents "missing anions" not included in those 4. The size of the anion gap helps to determine the cause of metabolic acidosis.
A reduction in CO2 can also be caused by respiratory alkalosis, which is from hyperventilation syndrome (usually not something you consciously notice). It just means respiratory rate is being regulated oddly.
CO2 actually is reduced in metabolic acidosis because your body is compensating for the acidity by increasing respiration and blowing off acid in the form of CO2. CO2 is actually an acid in terms of human physiology. If you release the CO2 from HCO3-, you are left with OH-, which is a base. Think of Lewis acids and bases rather than Arrhenius/Bronsted definitions.
If you have some abnormalities in CO2, then a more thorough evaluation for metabolic/respiratory acidosis/alkalosis can be performed which involves looking at blood gases (either arterial, generally the gold standard, or venous, which is much easier to get to).
You symptoms of bulging veins sound more like venous insufficiency, and I would google this. There is a treatment for it, but you should make sure that that is what it is first. It does cause venous pooling and is associated with POTS and ME.
The first step toward figuring out if you have metabolic acidosis would be looking at some very common bloodwork. What is the CO2 level? That is generally reduced in metabolic acidosis. The next thing is to look at the anion gap. This is usually with the electrolytes. If it is not there you can calculate it yourself - it's just cations minus anions from the electrolyte panel (monovalent). So it's basically Na+ + K+ - Cl- - HCO3- = anion gap. (Some people include the K+, and some do not, just make sure the reference ranges you use are based on the same inclusion or exclusion of K+.) CO2 in the blood is actually found mostly as HCO3-, which is why it's a monovalent anion (OH- from water combines with CO2 to form HCO3-).
The anion gap represents "missing anions" not included in those 4. The size of the anion gap helps to determine the cause of metabolic acidosis.
A reduction in CO2 can also be caused by respiratory alkalosis, which is from hyperventilation syndrome (usually not something you consciously notice). It just means respiratory rate is being regulated oddly.
CO2 actually is reduced in metabolic acidosis because your body is compensating for the acidity by increasing respiration and blowing off acid in the form of CO2. CO2 is actually an acid in terms of human physiology. If you release the CO2 from HCO3-, you are left with OH-, which is a base. Think of Lewis acids and bases rather than Arrhenius/Bronsted definitions.
If you have some abnormalities in CO2, then a more thorough evaluation for metabolic/respiratory acidosis/alkalosis can be performed which involves looking at blood gases (either arterial, generally the gold standard, or venous, which is much easier to get to).
You symptoms of bulging veins sound more like venous insufficiency, and I would google this. There is a treatment for it, but you should make sure that that is what it is first. It does cause venous pooling and is associated with POTS and ME.
JaimeS
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Regarding CO2:
Yes, during an exercise test they told me my lactate levels were out of range. (This was arterial, not venous.)
PCO2 range is 35 - 45-mmHg ; mine was 33.8
Bicarbonate range is 22 - 26-mEq/L; mine was 21
Base Excess should be - 2 to + 2-mEq/L; mine was - 4
Arterial lactate should be 0.6-1.6; mine was 5.6
CO2 is taken as a matter of course in my usual every-6-mo bloodwork, so I have a LOT of data saying it's generally low, though once in a while it climbs to 24 (lowest normal) level. I thought I already said that on this thread, but I believe I was thinking of someplace else! I don't see anywhere I mentioned it.
Anion gap:
Hmmm. Now I don't believe I've ever calculated this myself, before. It strikes me that the units should probably all be the same, and they're not. [Edit: they're equivalent; I checked ]
[Na+ + K+] - [Cl- + HCO3].....
[142-mmol/L + 4.3-mmol/L] - [ 107 + 21-mEq/L]
145.3 - 128 = 17.3
According to my Blood Chemistry and CBC Analysis, this (anything over 16mEq/L) is high.
I ruled this out, Eeyore, based on other data. Unfortunately, my brain-fog makes my brain like a bookshelf that can only hold a certain number of books [Edit: initially, that said, "my brain is like a like a" which is a self-demonstrating article!]. I definitively ruled out respiratory alkalosis at one point, but I can no longer tell you why. As Sherlock might say, "I deleted it". Since I'm a human being and can easily be wrong, this is a bit not good, but I can't help it. My brain really only holds a certain amount of information.
Yes! Had it done.
Why? And now that you've seen all this data, does it change your mind? Not to be challenging; I'm genuinely curious. This exact symptom is listed as a sign of metabolic acidosis. Why does it seem otherwise to you?
Thank you so much for the thorough grounding in CO2 and metabolic acidosis!
-J
Yes, during an exercise test they told me my lactate levels were out of range. (This was arterial, not venous.)
PCO2 range is 35 - 45-mmHg ; mine was 33.8
Bicarbonate range is 22 - 26-mEq/L; mine was 21
Base Excess should be - 2 to + 2-mEq/L; mine was - 4
Arterial lactate should be 0.6-1.6; mine was 5.6
CO2 is taken as a matter of course in my usual every-6-mo bloodwork, so I have a LOT of data saying it's generally low, though once in a while it climbs to 24 (lowest normal) level. I thought I already said that on this thread, but I believe I was thinking of someplace else! I don't see anywhere I mentioned it.
Anion gap:
Hmmm. Now I don't believe I've ever calculated this myself, before. It strikes me that the units should probably all be the same, and they're not. [Edit: they're equivalent; I checked
][Na+ + K+] - [Cl- + HCO3].....
[142-mmol/L + 4.3-mmol/L] - [ 107 + 21-mEq/L]
145.3 - 128 = 17.3
According to my Blood Chemistry and CBC Analysis, this (anything over 16mEq/L) is high.
I ruled this out, Eeyore, based on other data. Unfortunately, my brain-fog makes my brain like a bookshelf that can only hold a certain number of books [Edit: initially, that said, "my brain is like a like a" which is a self-demonstrating article!]. I definitively ruled out respiratory alkalosis at one point, but I can no longer tell you why. As Sherlock might say, "I deleted it". Since I'm a human being and can easily be wrong, this is a bit not good, but I can't help it. My brain really only holds a certain amount of information.
Yes! Had it done.
Why? And now that you've seen all this data, does it change your mind? Not to be challenging; I'm genuinely curious. This exact symptom is listed as a sign of metabolic acidosis. Why does it seem otherwise to you?
Thank you so much for the thorough grounding in CO2 and metabolic acidosis!
-J
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Ok - well lactate levels do normally rise during strenuous exercise. Did they tell you if your anaerobic threshold was abnormally low? Lactate is one of the things they use to measure when you cross the AT. Are the ABG values you give a baseline or during exercise? If so do you have baseline numbers? Lactate elevation does suggest lactic acidosis but this is normal under strenuous exercise - but your AT may be low. Was your VO2 Max low or normal? What was their general interpretation of the CPET? Was this the only CPET, or did you do 2 days in a row, and if the latter, how did they differ? Did they give you a pH as well as the other data you've listed? pH should be below normal range for acidosis. The reduction in CO2 is a compensatory mechanism for the acidosis - so if your pH is lower than the normal range (which is very narrow), we would say you have compensated metabolic acidosis. This means your body is increasing respiration to get rid CO2 (an acid for this purpose) and compensate for metabolic acidosis.
24 isn't really very low for CO2 - generally unless it's below 20 it's not considered low. How low have yours been? I did go through a phase earlier in my illness when I had lower CO2 levels, sometimes as low as 13 I think. Then it sort of normalized and now runs low 20's.
Some of the information suggests lactic acidosis. It's not clear because I wasn't sure of some details in the info you provided (i.e. baseline vs exercise, etc.) and some info wasn't given. Lactic acidosis could cause venous insufficiency - so it might be splitting hairs to ask which it is.
You are right that you should use the same units, however you have - meq/L is the same thing as mmol/l for monovalent ions. For divalent or other polyvalent, they are not the same. e.g. For Ca++, 1 mmol/L of Ca++ is 2 meq/L of Ca++. It just makes it easier to look at cation/anion balance if you make it so you can just add or subtract stuff without having to adjust for various charges (other than +/-).
An anion gap of 17.3 is probably high normal since you are including K+. Often it is omitted because it's small and doesn't vary much and docs used to do this stuff in their heads before computers and calculators looking at critical patients, etc. The reference range is about 10-20 if you are including K+, but there are different ideas about what the reference range should be from diff labs - usually they calculate it for you and then you can use their ref range.
The gap does suggest that there is an anion that is not being measured in those 4. That's what an anion gap is - a missing negatively charged ion (not Cl- or HCO3-). It seems likely that it's lactate.
24 isn't really very low for CO2 - generally unless it's below 20 it's not considered low. How low have yours been? I did go through a phase earlier in my illness when I had lower CO2 levels, sometimes as low as 13 I think. Then it sort of normalized and now runs low 20's.
Some of the information suggests lactic acidosis. It's not clear because I wasn't sure of some details in the info you provided (i.e. baseline vs exercise, etc.) and some info wasn't given. Lactic acidosis could cause venous insufficiency - so it might be splitting hairs to ask which it is.
You are right that you should use the same units, however you have - meq/L is the same thing as mmol/l for monovalent ions. For divalent or other polyvalent, they are not the same. e.g. For Ca++, 1 mmol/L of Ca++ is 2 meq/L of Ca++. It just makes it easier to look at cation/anion balance if you make it so you can just add or subtract stuff without having to adjust for various charges (other than +/-).
An anion gap of 17.3 is probably high normal since you are including K+. Often it is omitted because it's small and doesn't vary much and docs used to do this stuff in their heads before computers and calculators looking at critical patients, etc. The reference range is about 10-20 if you are including K+, but there are different ideas about what the reference range should be from diff labs - usually they calculate it for you and then you can use their ref range.
The gap does suggest that there is an anion that is not being measured in those 4. That's what an anion gap is - a missing negatively charged ion (not Cl- or HCO3-). It seems likely that it's lactate.
JaimeS
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Yes. Doc mentioned it was normal "for someone twice your age".
That I had 'deconditioning'... of course. If only I'd run around more often with chronic fatigue, it would be gone. Except that all of my symptoms were there when I was working full-time, and were not brought on by rest. Even the tech said it was nonsense. He added, "feel free to ignore this packet of advice about exercise I'm about to give you." There are still a lot of good people at Mayo.
I mentioned that was the highest it's ever been.
I think I'll close there; regardless of additional comments, peace out.
-J
@JaimeS, I have experienced many of the same things you are going through now. I do think there are subsets in ME, but if so, we might be in the same one...
I also had a CPET done and had a low VO2 Max. The doc who read it said it was too low to be deconditioning and told me he suspected dilated cardiomyopathy. Referred me for stress echo. Stress echo was normal - no abnormal wall motion, no changes in the EKG, and heart looked fine. Only real abnormality was a hyperdynamic left ventricle (elevated ejection fraction). After that was normal though, no one knew what to do. Still, at least I didn't get the deconditioning thing (which I have definitely gotten in the past from various docs).
Mayo is really state of the art in diagnosing POTS and autonomic dysfunction, but they always prescribe exercise, which simply does not work for ME patients. I think they know this - but they aren't really admitting it yet. Some patients have said that after the exercise failed, docs at Mayo have said, "yeah we really don't know what to do for ME - if it were POTS w/o ME, then exercise would help. Sorry" - or something like that. I think they just prescribe exercise hoping it's not ME and knowing that if it is, it won't work.
The low CO2 is interesting, and something I had for a while, although it just went away several years ago and has not come back. Even in a bad relapse (which I've been in recently), it's been over 20 the whole time. I don't understand it. Several ME docs have noted low CO2 in their patients. It makes sense - if there is lactic acidosis, the pH will decrease, so the body will compensate by exhaling acid. It implies an abnormality with either oxygen delivery or a decoupling of oxygen delivery and oxidative phosphorylation/ATP generation. My anion gap also runs about the same as yours - again suggesting presence of an unmeasured anion (probably lactate).
I've had elevated lactate/pyruvate ratios at rest as well.
After you do vigorous exercise, do you get shaky? Like really, really shaky after pushing a muscle? If I lift something heavy (my strength is relatively unchanged) I get very shaky in those muscles to the point where I can't even pick up a glass or a pen. Very strange. I've heard a couple others with ME report this as well.
I also had a CPET done and had a low VO2 Max. The doc who read it said it was too low to be deconditioning and told me he suspected dilated cardiomyopathy. Referred me for stress echo. Stress echo was normal - no abnormal wall motion, no changes in the EKG, and heart looked fine. Only real abnormality was a hyperdynamic left ventricle (elevated ejection fraction). After that was normal though, no one knew what to do. Still, at least I didn't get the deconditioning thing (which I have definitely gotten in the past from various docs).
Mayo is really state of the art in diagnosing POTS and autonomic dysfunction, but they always prescribe exercise, which simply does not work for ME patients. I think they know this - but they aren't really admitting it yet. Some patients have said that after the exercise failed, docs at Mayo have said, "yeah we really don't know what to do for ME - if it were POTS w/o ME, then exercise would help. Sorry" - or something like that. I think they just prescribe exercise hoping it's not ME and knowing that if it is, it won't work.
The low CO2 is interesting, and something I had for a while, although it just went away several years ago and has not come back. Even in a bad relapse (which I've been in recently), it's been over 20 the whole time. I don't understand it. Several ME docs have noted low CO2 in their patients. It makes sense - if there is lactic acidosis, the pH will decrease, so the body will compensate by exhaling acid. It implies an abnormality with either oxygen delivery or a decoupling of oxygen delivery and oxidative phosphorylation/ATP generation. My anion gap also runs about the same as yours - again suggesting presence of an unmeasured anion (probably lactate).
I've had elevated lactate/pyruvate ratios at rest as well.
After you do vigorous exercise, do you get shaky? Like really, really shaky after pushing a muscle? If I lift something heavy (my strength is relatively unchanged) I get very shaky in those muscles to the point where I can't even pick up a glass or a pen. Very strange. I've heard a couple others with ME report this as well.
JaimeS
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Yes, Alice - I think so. I really do this it's some kind of acidosis, which causes peripheral vasodilation. That's why you can suddenly seem them bulge, as the blood rushes down into the hands. Both CoQ10 in high amounts (@least 400-mg, increase up to 1200-mg as tolerated) and baking soda and Enzymedica's pH Basic work. Like a lot of our other symptoms, it seems to be directly related to energetic collapse. Whether or not my hypothesis regarding acidosis is correct, these are the supplements that seem to help.
I take Vinpocetine, which I'm sure makes it worse, since it's a general vasodilator; but Vinpo allows me to turn my head from side to side and also think in complete sentences, so needless to say, I'm attached to it.
I say 'to tolerance' regarding the CoQ-10 because I just had a conversation about it causing some people to feel jittery. The CoQ enzyme family works on the electron transport chain, so it's people with energy metabolism problems who feel supported, helped, and even calmed by this supplement. For others, it might hyper-excite them.
I've also heard it doesn't 'do anything', but even at low doses I've found it has a building-up effect. I took 200-mg a day for awhile, but I'm going to up it, since I took 600-mg during a crash on the advice of @SOC and recovered after 20 minutes or so. I think that if someone has real ETC issues, a higher dose should be recommended than the 200-mg that is typically sold in supplements.
-J
I take Vinpocetine, which I'm sure makes it worse, since it's a general vasodilator; but Vinpo allows me to turn my head from side to side and also think in complete sentences, so needless to say, I'm attached to it.
I say 'to tolerance' regarding the CoQ-10 because I just had a conversation about it causing some people to feel jittery. The CoQ enzyme family works on the electron transport chain, so it's people with energy metabolism problems who feel supported, helped, and even calmed by this supplement. For others, it might hyper-excite them.
I've also heard it doesn't 'do anything', but even at low doses I've found it has a building-up effect. I took 200-mg a day for awhile, but I'm going to up it, since I took 600-mg during a crash on the advice of @SOC and recovered after 20 minutes or so. I think that if someone has real ETC issues, a higher dose should be recommended than the 200-mg that is typically sold in supplements.
-J
I personally have had very good experiences with Q10. I take lots of it - 200mg bid of the Q-Gel Mega 200 (absorption is about 5-6x higher than regular Q10) - so it's a lot of Q10. I've always found it gave me more energy and never had negative effects from it that I've noticed. It's a bit pricey but not as bad as it used to be - I think it's about 40-50 / month now.
I think there was some reason not to take too much vinpocetine - I can't remember why - but some long term side effect that worried me, although it looked potentially useful, so I never took it. Maybe I'm mixed up though, it was a while ago.
@JaimeS - Do you get any foot/ankle swelling at the end of the day with bulging veins, more prominent in the lower body, or is it not time-dependent and global throughout the body?
I think there was some reason not to take too much vinpocetine - I can't remember why - but some long term side effect that worried me, although it looked potentially useful, so I never took it. Maybe I'm mixed up though, it was a while ago.
@JaimeS - Do you get any foot/ankle swelling at the end of the day with bulging veins, more prominent in the lower body, or is it not time-dependent and global throughout the body?