Protein deficiency: possible root causes?

[lenora]

To Rufous, Lionhearted, Pearshaped, Zebra and so, so many of you who have kind enough to respond. Some much needed info here from this end:

My husband had started mixing me Power Ade from a powdered mix instead of buying Gatorade full of food coloring and sugar. While he isn't nearly as health conscious as I am, he did bother to look this up after I asked him to be put on Gatorade once more. Here is turns out that there is 25% less salt in Power Ade than Gatorade, which certainly explains the declining levels of sodium. We've been doing this to ourselves; not wonder the Dr.'s can't figure it out. Watch everything; take nothing for granted and be on guard for each other. No question is too small to be asked again and again. Rod's on his way to the store now to pick up some Gatorade. Hopefully, we'll be able to put this behind us rather soon. In the meantime, I have forehead bruising, and some very sore legs to deal with. I'll do it, though. I'll stay in touch with you and wish each of you well. Look into your own diets and have questions at the ready for the experts.

 

[ellie84]

Thank you @Moof for your interesting reply.
Well they told me ALL my amino acids were very very low.alltogether.despite eating lots of protein.

Where does the protein go?
asking myself if this could be due to some Liver issues or could this be bound to other diseases? Everyone else has protein deficiency despite eating loads of protein?

How do you know your aminoacids levels? What kind of exam is that? Is it different from the usual protein profile they do in routine blood tests?

I do bioelectrical impedance analysis when I go to the dietician and she told me that when I first started going, according to the BIA, I was in a state of protein malnutrition, despite eating plenty of proteins. It got better, but I had to up my protein intake. When I used to go to the gym she suggested taking BCAAs to fight hypoglycemic episodes I suffer from, and they do actually work. I cannot function well on carbohydrates, I wonder if my body cannot use glucose from carbohydrates properly and starts using proteins in excess to produce energy.

 

[lenora]

Hi Ellie.....I'm on Ensure to help with the protein deficiency. I've been taking vitamins, supplments, etc., for years now and I do credit them with the health I have now. The problem is that we don't even know which ones are good for us, which amounts, etc. You know what I'm saying. I've stopped taking all of them and think I'll switch to just a plain multi-vitamin for awhile.

Please look into other groups such as those at The Miami Institute...learn about their stories, it's amazing how similar the symptoms are. Also the ME group in the U.S. (which also has a lot to do with the group in the U.K.), follow the different research in each group and slowly a picture may emerge. Another group to closely watch is the Veteran's Group in the U.S. A lot of soldiers return suffering from the exact same symptoms we exhibit...evidence of a chemical agent, an overload of the body's defense system? Who knows?....but there are plenty of questions.

I wish I could hand all of you the gift of health, I really do, but I can't heal myself let alone anyone else. I'm turning the mantle over to you, please pick it up and wear it proudly and without vanity. You'll be surprised at what you learn and what you can do. We all become backdrops of history, but that's fine with me. The thing is that I made a difference when I could. Yours, Lenora.

 

[Pearshaped]

it was simply called
"amino acid profile".its a blood test.Probably not covered by every insurance but not too expensive.

They must have had something in mind when they tested it.But its not the first time they considered to test for something and then they cant tell you what it means when results are far from normal.*sigh*

 

[ellie84]

Never heard of this test.
They were probably looking for a different result and when they find something unusual they just ignore it.

 

[lenora]

I'll try to check the Amino Acid profile the next time I go for blood testing (which is now 3 wks. away unless last wks.' saw something unsual. And it did, I was low in Sodium again, this in spite of heavily salting my food, etc.) My protein levels seem to be OK, but then that may be because I'm recently home from the hospital...who knows? Really, that's the bottom line, who does know? I don't blame anyone/bc they're trying and we have to send in our results until a pattern emerges. We're not the easiest of patients (& no, I'm not saying it's our fault, but it is a fact that we don't seem to have normal responses to things, do we?) so we just give as much info as possible to those in a position to help. Yours Lenora.

 

[Yuno]

it was simply called
"amino acid profile".its a blood test.Probably not covered by every insurance but not too expensive.

They must have had something in mind when they tested it.But its not the first time they considered to test for something and then they cant tell you what it means when results are far from normal.*sigh*

A question if you don’t mind: Iam trying to do an amino acid profile test and it’s seems to be really difficult for the practitioners I work with for some reason. The problem seems to to be that they apparently don’t test all amino acids, but have to pick the ones , that get tested? can i ask where you had your test made and whether they tested ALL amino acids?

 

[lenora]

Hello Everyone....Just wanted to check in, thanks for the info regarding the amino testing, and letting you know, in case you do this, sodium levels are easily corrected by adding regular iodized Morton's salt to our food while cooking. We've been led to believe that sea salts and other types without iodine are best for us. Well, they aren't. We absolutely have to have iodine in our bodies, and too much liquid of any kind, will wash it out of our bodies very easily. Needless to say, those of us in a hot climate have a special problem going on.

Protein drinks really are great for providing not just protein, but stores of vitamins and other useful things for our bodies. The chocolate Ensure is extremely creamy and good. I'm lactose intolerant (who isn't any longer?), have never liked milk, but whatever this is made of agrees with my stomach. You can buy a lower calorie type if you desire...150 calories. Do be careful as some have 350 calories in them. If that's not a problem, fine...go for it.

I offer to pay extra for texts but it's hard to get the correct codes. I'll work harder on that. Thanks. Yours. Lenora.

 

[lenora]

Hi, @Pearshaped!

I know that you are asking for help regarding protein, but I don't know anything about that.

However, I do know a little something about Amino Acid profile testing, both serum and urine, so I am concerned about your results.

I hope you won't mind if I comment on that aspect of your thread.

A complete amino acid profile usually comprises 32 individual amino acids. Depending on the quality of the lab, there should be a doctor's interpretation at the bottom of your lab report.

I do not know what would cause your entire amino acid profile to be low, but it is certainly suggestive of an inborn error of metabolism, meaning a genetic metabolic disease that is separate from ME/CFS.

You mentioned that your doctor was concerned, but clueless what to do. In my opinion, he should refer you to a geneticist that specializes in metabolic diseases.

Such specialists usually work at pediatric clinics, but see adults as well.

I realize that you are currently bed bound and may not be interested in pursuing this path.

Although this class of diseases is rare, a few drug companies have taken interest, and offer treatments to improve quality of life for just a few of the many metabolic diseases.

I wish I didn't know about any of this stuff, but I do, so if I can help you in any way, you can respond here or send me a private message. I'll be back online at some point this weekend.

Best of luck to you!
Zebra

 

[lenora]

Hi, @Pearshaped!

I know that you are asking for help regarding protein, but I don't know anything about that.

However, I do know a little something about Amino Acid profile testing, both serum and urine, so I am concerned about your results.

I hope you won't mind if I comment on that aspect of your thread.

A complete amino acid profile usually comprises 32 individual amino acids. Depending on the quality of the lab, there should be a doctor's interpretation at the bottom of your lab report.

I do not know what would cause your entire amino acid profile to be low, but it is certainly suggestive of an inborn error of metabolism, meaning a genetic metabolic disease that is separate from ME/CFS.

You mentioned that your doctor was concerned, but clueless what to do. In my opinion, he should refer you to a geneticist that specializes in metabolic diseases.

Such specialists usually work at pediatric clinics, but see adults as well.

I realize that you are currently bed bound and may not be interested in pursuing this path.

Although this class of diseases is rare, a few drug companies have taken interest, and offer treatments to improve quality of life for just a few of the many metabolic diseases.

I wish I didn't know about any of this stuff, but I do, so if I can help you in any way, you can respond here or send me a private message. I'll be back online at some point this weekend.

Best of luck to you!
Zebra

Zebra....an interesting answer to a problem similar to my own. At the age of 73, I'm having enzyme problems.

I had capability when it came to vitamins/supplements and even some herbs, but all the newly discovered enzymes are waiting for me to discover them. I didn't even know there were 32 in total.

You gave an excellent answer, and I also thank you for putting so much thought into this.

Anyway, while I won't be able to remember them all, I do know the names of some of the enzymes, and how huge a role they play in the body. There is always homework....and that's a good thing!! It keeps us in the "now," learning and being a part of the world. I don't want to escape into TV land, and my books forever. I'm interested in everything.

If you ever hear about a newly discovered illness, Autoimmune Encephalitis, please let me know. I have it, has resulted in severe seizures, one of which left me unconscious for 2 days, and is affecting my brain. It has to do with enzymes, sodium (lack of)being the main culprit thus far, but info will evolve as all things do. Thanks again. A great answer. (Aug. 19th I believe.) Yours, Lenora.

 

[Pearshaped]

@Yuno If I remember correctly it was a panel and Lab used in Germany.Im sorry I am of no help since I dont have the paper anymore.

 

[vision blue]

@Pearshaped i also have very low urine protein levels.

One thing to note is be sure you are doing a 24 hour collection. This avoids them making estimates of AAs that could be wrong in your case

Next thing is to take is a fasting blood AA. Thats important. If you have a metabolism problem, then your blood AA levels will be low too (or high - they actually mostly look for high for inborn errors of metabolism, but i find low can be of vale too) If they are on the other hand completely norma mid range l thats what counts. What youre forgetting is we are not supposed to have protein (AAs) in the urine! The kidneys if they are working well will hang onto all protein and not let it into the urine! So you can ask your plebeian doc to order a blood AA test. Theres nothing yet that indicates any genetic problem.

The real value of the AA urine test i often to look at the intermediaries. to see if any particular pathway id blocked. Youll see high values, as part of that pattern often (in the i intermediTes) )

(Other things that influence level are your body size btw)

Question- how is your ammonia level? Mine is relatively high but i dont know why given my low AA levels I think @Learner1 once discussed this in a thread but dont remember. My urine is also very acidic no matter what i do. I do have slightly high oxalic acid) (in another test ) but not enough to have such high urine acid. Its possible my high ammonia is to offset what would be even more acidic urine were iit not for the ammonia but thats as far as my thinking has gotten on it.

Shoukd we trade AA results? Im planning to repeat soon but do have a past one ready now.

 

[Pearshaped]

@Pearshaped i also have very low urine protein levels.

One thing to note is be sure you are doing a 24 hour collection. This avoids them making estimates of AAs that could be wrong in your case

Next thing is to take is a fasting blood AA. Thats important. If you have a metabolism problem, then your blood AA levels will be low too (or high - they actually mostly look for high for inborn errors of metabolism, but i find low can be of vale too) If they are on the other hand completely norma mid range l thats what counts. What youre forgetting is we are not supposed to have protein (AAs) in the urine! The kidneys if they are working well will hang onto all protein and not let it into the urine! So you can ask your plebeian doc to order a blood AA test. Theres nothing yet that indicates any genetic problem.

The real value of the AA urine test i often to look at the intermediaries. to see if any particular pathway id blocked. Youll see high values, as part of that pattern often (in the i intermediTes) )

(Other things that influence level are your body size btw)

Question- how is your ammonia level? Mine is relatively high but i dont know why given my low AA levels I think @Learner1 once discussed this in a thread but dont remember. My urine is also very acidic no matter what i do. I do have slightly high oxalic acid) (in another test ) but not enough to have such high urine acid. Its possible my high ammonia is to offset what would be even more acidic urine were iit not for the ammonia but thats as far as my thinking has gotten on it.

Shoukd we trade AA results? Im planning to repeat soon but do have a past one ready now.

Hey, thank you for your answer, actually AA in my urine is sometimes too high and sometimes totally normal.
Im not sure if I was tested for ammonia. Good point.
in the blood , all AAs are low. And my urine is the opposite of acidic. atm, lactate is ok, pyruvate is very low (<0.5)

about the urine: They made a 24 hr collection, but there, it must have been ok then, otherwise I would remember.
will come back to you.

 

[Learner1]

Question- how is your ammonia level? Mine is relatively high but i dont know why given my low AA levels I think @Learner1 once discussed this in a thread but dont remember. My urine is also very acidic no matter what i do. I do have slightly high oxalic acid) (in another test ) but not enough to have such high urine acid.

Low citrulline, arginine, and/or ornithine will cause high ammonia. Taking any of them might help. It is not related to oxalurie, where taking citrate before each meal, and ensuring B6 (pyridoxal-5-phosphate), minerals and antioxidant levels aren't depleted is helpful as well as lowering dietary oxalates.

Im not sure if I was tested for ammonia. Good point.
in the blood , all AAs are low. And my urine is the opposite of acidic. atm, lactate is ok, pyruvate is very low (<0.5)

You might test catecholamines/neurotransmitters as aminos are needed to make them. Low epinephrine can lead to low pyruvate. Aminos do a lot of things in the body, if all are low, you might benefit from raising your protein intake.

 

[vision blue]

@Pearshaped Ah, thanks- i must have completetly misread your post! Obviously very different, so completely discount my post. Will have to start reading more carefully- not sure why i though tit was urine values that were low. Here's a crummy site on causes of genuintely low AAs (I assume blood) - https://drjockers.com/5-reasons-amino-acid-deficiency/ I assume you've also googeled to death low blood AA levels. would be curious then if urine test strips show you have any protein in urine, as well as ruled out any kidney issue (if blood AA low at same time urine AA is high, that suggests, your kidneys are not hanging onto protein the way they are supposed to). , but more than that and i'm out of my element. I'll reread your post to see if you said any AAs in blood more low than others. Sorry for wating your time.

edit to add- by ammonia, i just meant the ammonia urine value which is shown already in the urine AA test; no need for a blood ammonia in your case at all . But ithe whole ammonia in urine no longer relevent )

 

[vision blue]

@Learner1 Thnaks- will check of those are any lower than the others; when everything in the lowest 2nd percentile, can be hard to see differences. Maybe the better qustion is why urine so acidic given oxalic acid not high enough to do that and given my meat consumption is low . i.e. it really could be that ammonia which is basic is added to balance the acid in urine as best as possible rather than the ammonia being itself the pathology. so its maybe the acidity that needs explanation.

 

[Learner1]

@Learner1 Thnaks- will check of those are any lower than the others; when everything in the lowest 2nd percentile, can be hard to see differences. Maybe the better qustion is why urine so acidic given oxalic acid not high enough to do that and given my meat consumption is low . i.e. it really could be that ammonia which is basic is added to balance the acid in urine as best as possible rather than the ammonia being itself the pathology. so its maybe the acidity that needs explanation.

It's unlikely oxalic acid is the driver of acidity.

Many people on low oxalate diets find it difficult to have low meat consumption as all vegan proteins are medium to high oxalate. There are many patients populating low oxalate groups who were vegans, vegetarians, and green smoothie fans who unfortunately learned their diet was killing them slowly and belatedly learned that animal proteins as well as fats lacked oxalates and allowed them to undo the damage oxalates had done.

As far as ammonia, this diagram shows how citrulline, ornithine and arginine can help. Additionally, if you tend to be short of tetrahydrobiopterin, which done of us are, this increases the tendency toward low citrulline and ornithine.

https://images.app.goo.gl/AMq5qUFNCf3Acujw5

As for amino acids, in general, women with ME/CFS have been found to be deficient in amino acids by multiple researchers. I've had symptoms associated with deficiencies of amino acids which fit the pattern found by the researchers which resolved once I supplementrf that amino acid or acids. I'm the end, I upped my protein intake to 1.6-1.8g/kg body weight daily.

 

[vision blue]

@Learner1 still remains unclear tho why my urine is so acidic all the time.
(My point is that my high ammonia may be serving an important function. With a ph of 10 or 11, it nay be there intentionally to help neutralize acids in urine to ph of 4.5. So i may notbr in my interst to attempt to reduce ammonia intil i figure out what the high acid is all about, and then reassess ammonia levels if can get the acidity under control.

 

[Learner1]

@Learner1 still remains unclear tho why my urine is so acidic all the time.
(My point is that my high ammonia may be serving an important function. With a ph of 10 or 11, it nay be there intentionally to help neutralize acids in urine to ph of 4.5. So i may notbr in my interst to attempt to reduce ammonia intil i figure out what the high acid is all about, and then reassess ammonia levels if can get the acidity under control.

Makes sense. But, you may want to check into these factors that could be increasing acidity:

Stress. If your body is frequently in ‘fight or flight’ mode, your body is constantly secreting stress hormones. This not only creates inflammation in the body, it also increases acidity.

Shallow breathing. Chronic stress also leads to rapid and shallow breathing or even holding your breath. Oxygen alkalizes your blood so reduced oxygen intake from this type of breathing pattern can increase acidity in the body.

Toxins. Pesticides and other chemicals in conventional produce and meats; heavy metals; industrial pollutants; hormones and other chemicals found in foods, plastics, cleaning supplies and beauty products; and even potential chemicals in your tap water all increase acidity in the body.

Infections. Infections create a more acidic environment which, in turn, makes you more vulnerable to germs leading to a vicious cycle.

Acidic Diet. Sugar, refined flours, food additives, table salt, trans fats, fried foods, meat, dairy, alcohol and caffeine make it difficult for your body to restore its pH balance.