Are you low in amino acids?

JanisB

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I have been interested in the issue of low amino acids (on UAA test) in PWC's because I have been low for years.

Even when I felt great in 2007 and could do aerobic exercise and put in a full day, I was still low, and eating more protein did not make any difference. In fact, it just seemed to lower my levels, except for products of amino acid catabolism such as ammonia.

Now I have learned about an amino acid product called SON Formula or MAP (master amino acid pattern) which has been developed by researchers looking at net nitrogen utilization. What they did over 34 years of research was study what happens to various proteins as they go into the body by measuring the nitrogen content of feces and urine. They found that a certain ratio of amino acids has a 99% utilization -- that is only 1% gets burned up into nitrogen and excreted. This is the product they are now marketing.

I have not yet tried using it, but I am thinking of trying it. It seems to me that if this product works for people with the amino acid imbalances in ME-CFS (not studied by the research team), we should get increased anabolism --e.g. stronger muscles -- as the product would not be catabolized for energy in the Kreb's cycle as our other dietary proteins. Perhaps the ability to do a bit more physical activity would result. Perhaps PEM would reduce as our body had the nutrition to quickly repair the damage to tissues from exercise.

If you have tried it and gotten good or poor or no results, please let me know.

If you are interested in trying it, also let me know. The company has offered me a case discount and I am thinking it would be interesting to do an informal study if enough people are interested in trying it.
 

dannybex

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I'd be very interested Janis. I haven't had an amino acid profile done for ten years, but back then, only three of the 'essentials' were in the normal range. As for the 'nonessentials', 3 were low-normal, plus glutamic acid was the highest of all, and glycine the lowest.

And I just presume things have gotten worse since then, especially during the past year or so, as I've definitely lost muscle, even in my HANDS. I've always been too thin, but this is getting scary.

Do you have any idea of what the price would be?

Thanks in advance,

Dan
 

Dr. Yes

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Hi JanisB..

Do you know if there is a particular test that is recommended to evaluate amino acid levels (i.e. are some considered more accurate than others) and, most importantly, if any are typically covered by insurance (private or Medicaid?)
 

willow

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Janis

Janis,

eating more protein did not make any difference. In fact, it just seemed to lower my levels, except for products of amino acid catabolism such as ammonia.
Not what your're asking but I think I have gut pathogens that feed on amimos.

I supplemented aminos on Yasko and per recommendations. BCAA in particular gave me that unnatural feeling of hunger that in my world is pathogens saying they love what I've just given them and want more of it!

Unlike many with this disease I find high or averag protien diets usually unsuitable.

Reminds me of how some with rampant gut infections do progressively worse the more they eat of anything.

I'm quite muscular but my protein deficiencies seem to show up as enzyme deficiencies, inluding neuro enzymes, and other cell types.

Thinking I have to kill a few more pathogens before Ican boost aminos/protein.
 

xchocoholic

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Thanks,

I'm low on aminos so I'll check this out ... SON Formula or MAP ...

I've found that eating meat every few hours and taking Essential aminos help but I still need some glucose to remain functional. I read once that diabetics are told to eat something sweet prior to excercise and when I started doing this it helped a lot ... I take ginger candy chews with me and eat 2 of them when I need a boost. Not that this always works but it works quite often.

If I eat too much meat protein, Betaine HCL will help me digest it ... Marcia
 

dannybex

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Janis,



Not what your're asking but I think I have gut pathogens that feed on amimos.

I supplemented aminos on Yasko and per recommendations. BCAA in particular gave me that unnatural feeling of hunger that in my world is pathogens saying they love what I've just given them and want more of it!

Unlike many with this disease I find high or averag protien diets usually unsuitable.

Reminds me of how some with rampant gut infections do progressively worse the more they eat of anything.

I'm quite muscular but my protein deficiencies seem to show up as enzyme deficiencies, inluding neuro enzymes, and other cell types.

Thinking I have to kill a few more pathogens before Ican boost aminos/protein.
Very interesting point Willow.

One thing that is often not ordered by docs and missed even by the best testing is parasite infections. There's a new DNA test for parasites and other gut microbes put out by Metametrix that my doc ordered and I just sent off a couple of days ago. It's supposed to be much more accurate...we'll see. :confused:

But because I've had parasites in the past (even my HMO actually found an infection in 2003!), plus had them after a trip to Mexico in 1996 (pre-CFS), there's a possibility that these buggers have never really been successfully treated.

Dr. Yes: The amino acid profile I had done years ago was by Genova...and was not covered by insurance back then. Not sure about now, although highly doubt it. Seems like most of the tests that actually lead to some answers for CFS are never covered by insurance, medicare or medicaid. I had to raise the funds to pay for the metametrix test.
 

Athene

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I have read that candid albicans loves feeding on amino acids. I don't know if this is still regarded as reliable, but I thought I'd mention it in case you want to look into it...
 

xchocoholic

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According to this website ...

http://www.freepatentsonline.com/5132113.html

Here's the patent info on this ... this is an old product ... it gives the quantities down further on this page but this gives you the idea .. It has tryptophan so I couldn't take it during the day. It's missing the essential amino Histidine for some reason.

Nutritional composition containing essential amino acids United States Patent 5132113

Inventors:Luca, Maurizio (Corso Francia, 206 Int. 7, Rome, IT)

Application Number:07/604665 Publication Date:07/21/1992 Filing Date:10/26/1990 Export Citation:Click for automatic bibliography generation

Primary Class:424/750 Other Classes:426/72, 424/764, 514/419, 426/74 International Classes:A23L1/30; A23L1/302; A23L1/304; A23L1/305; A61K31/70; A61K33/00 Field of Search:426/72, 426/73, 426/74, 514/23, 514/52, 514/909,


Claims:I claim:

1. A nutritional composition comprising which consists essentially of a combination of the following:
(a) isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine in amounts relative to one another which will provide a Net Nitrogen Utilization (NNU) of at least 80%;

(b) a carbohydrate selected from the group consisting of sucrose, maltose and sorbitol, and a highly polyunsaturated vegetable fat selected from the group consisting of safflower oil, sunflower oil and corn oil; and

(c) for each gram of amino acid, an amount of vitamins which is equivalent to the following:

______________________________________
Vitamin A 60.0-109.0 mcg Vitamin D 37.0-63.0 ng Alpha-tocopherol 0.078-0.130 mg Vitamin K 2.0-4.0 mcg Vitamin B1 10.0-20.0 mcg Vitamin B2 27.0-48.0 mcg Nicotinamide 0.13-0.23 mg Pantothenic Acid 0.18-0.30 mg Vitamin B6 13.0-23.0 mcg Biotin 0.43-0.73 mcg Folic Acid 3.5-6.5 mcg Vitamin B12 35.0-65.0 ng Vitamin C 3.5-6.5 mg.
______________________________________
 

Dreambirdie

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If someone gets this product, could they please send me a small sample to try?
I am burnt on trying things that don't work and then needing to toss them.

In fact, we should start a supplement swap somewhere on this forum. I have BOTTLES of stuff I don't use.
 

Dr. Yes

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Dr. Yes: The amino acid profile I had done years ago was by Genova...and was not covered by insurance back then. Not sure about now, although highly doubt it. Seems like most of the tests that actually lead to some answers for CFS are never covered by insurance, medicare or medicaid. I had to raise the funds to pay for the metametrix test.
Thanks dannybex.

:Retro mad::Retro mad: We should have a smoking head emoticon. I had a feeling it wouldn't be covered; as you say, few of the really useful tests are. I have been trying to get a CDSA test covered too, but am running into the same problems.. If anyone knows of an amino acid profile that might be covered, please let me know.. :confused:
 

kerrilyn

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The amino acid profile I had done years ago was by Genova...and was not covered by insurance back then. Not sure about now, although highly doubt it. Seems like most of the tests that actually lead to some answers for CFS are never covered by insurance, medicare or medicaid. I had to raise the funds to pay for the metametrix test.
Dannybex, can you give the full (proper) name of the Genova Amino test if you have it? I find a lot of these 'bizarro' tests (they are bizarre and unheard of by me at least) are so confusing that I don't know what I'm looking for exactly without a specific name. I've noticed these companies have some similarly named tests, and I don't want to get the wrong one if I decide to do the testing. Thanks.
 

JanisB

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Amino Acid Testing
Several of you have asked about this. I have gotten covered on Medicare for both Plasma Amino Acids and for Urinary Amino Acids. I used Doctor's Data. However, Metametrix and Genova also have good tests available. In fact, Metametrix has the best interpretation and the best support.

To get coverage, you have to have an MD or DO order the test and use the right Dx and CPT codes. We used the code for protein/fat/carb malnutrition and CFS. On the repeat, since I had some irregularities, I also put in a code for those. (I think one was hypermethionuria). I have Medicare and an Aetna Medicare plus and both paid.
Janis
 

JanisB

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Gut Bacteria and Amino Acids

Hi Willow and all,
I know Dr. Yasko's theory that low aminos are due to gut dysbiosis. It makes some sense, in that certain aminos can feed them. However, several things keep me from thinking this is the whole problem.

  1. many people have dysbiosis without having low aminos
  2. my CDSA (Genova) and my Metametrix DNA stool test came back without any parasites, fungal or bacterial dysbiosis. The only thing indicating a possible irregularity was organic acid testing. But although a few individual values were high, the patterns of high values indicating particular types of dysbiosis were not evident.
  3. I did think that perhaps gut biofilms were an issue for me and I have been on the biofilm protocol. I have not tested aminos since doing that protocol.
  4. Many PWC's have normal plasma aminos. According to Metametrix's authors Lord and Bralley (wrote Functional Laboratory Testing), plasma aminos taken after an overnight fast indicate body amino acid status more accurately than other forms of testing. This is because after an overnight fast, there are no more aminos left from dinner, and those that are in the blood plasma are those that the body has mobilized from storage.
  5. Dr. Yasko uses urinary amino acid testing for all her patients. Perhaps she does this because, as a naturopath, she can't order blood. Or perhaps she wants to see aspects of the metabolism of aminos that show up in the urinary aminos test. I know that this is the test where most PWC's are VERY LOW. Urinary amino acids tell us what is being excreted from the body, not what is being used.
  6. The kidneys are involved in recycling amino acids. The urea ammonia cycle is also important. BH4 is an important molecule used in this cycle which, when inadequate, leads to more oxidative stress in the form of superoxide and peroxynitrate. It is possible that our low urinary aminos could result from the same process that leads to high oxidative stress in CFS-ME.

Well, I didn't know I was going to write a treatise on this! Sorry. You can tell I've been puzzling about it for some time. I wish I could interest some researcher or doctor in the problem. About the only one who has expressed any interest is Rich Van Konynenberg.

Rich believes that PWC's have low aminos because they are burning them for fuel in the Kreb's cycle. Here's a quote from his letter on another board:
So why can't the cells of PWCs burn carbs and fats well? I think
it's because they both must enter the Krebs cycle as acetyl CoA,
which comes into the cycle not far upstream of the partial block at
aconitase. Some amino acids, on the other hand, can enter the Krebs
cycle at locations downstream of aconitase, and most amino acids
(with the exceptions of threonine and lysine) can be converted into
other amino acids, by means of transamination reactions. These
reactions require vitamin B6, and I think the higher demand on
vitamin B6 from these reactions accounts for so many PWCs being
deficient in B6.
The idea behind taking the MAP/SonFormula is that the product has been shown to have only 1% catabolism (e.g. burning of the amino acids) compared to 45-80% of what is normally catabolized in eating dietary protein.
 

JanisB

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http://www.sonformula.info/aging/index.php

This page says that it's yeast, corn, soy, GMO, gluten, etc free ... it wouldn't let me copy from it though.

And I haven't seen a comprehensive breakdown yet ... anyone know which aminos are in this ?
Here's a link that has the full breakdown. Apparently it is patented and no other formula is the same. I suppose, however, one could order a custom formula from Metabolic Maintenance or a compounding formula that was identical. http://www.triliumhealth.com/pdf/PDRDruginfoSON.pdf

I got Rich Van Konynenberg's opinion:
On the amino acid formulation you have asked about, I do think it could offer some advantage for PWCs. I think the main advantage would be that the amino acids are in free form and would not require digestion, so more of them would probably be absorbed into the blood, though if a person has SIBO (small intestinal bacterial overgrowth) the bacteria would probably still intercept some of the amino acids.

I don't think that using this mix of amino acids will stop the cells from catabolizing amino acids in a person who has CFS. The reason is that the cells must burn some fuel in order to stay alive. In CFS, based on urine organic acids test results showing the levels of the Krebs metabolites, it appears that there is a partial block in the Krebs cycle at aconitase, which is early in the Krebs cycle. Carbohydrates and fats must come into the cycle as acetyl-CoA, which is just a little upstream of this partial block. I think that this situation is what prevents PWCs from being able to utilize carbs and fats for fuel at normal rates, and what leads to weight gain if they ingest them at the rates they did before they were ill. Since the cells can't burn them as fast as normal, insulin rises and shunts them into stored fat. Also, much of the acetyl-CoA that enters the Krebs cycle in this situation is shunted from citrate to the formation of stored fat.

In this situation, I think the cells will turn to burning amino acids in order to stay alive, and in this regard it won't matter what mix of amino acids is ingested. They will burn what they can get. Most of the amino acids can be interconverted by transamination, with the help of B6, and can then be fed into the furnace, if you will, beyond the partial block.

I think that the only way to correct this situation is to get glutathione up so it can control the oxidative stress, lifting the partial block at aconitase, and clearing out the garbage that is blocking the enzymes in the mitochondria. And I think the way to raise glutathione on a permanent basis is to lift the partial block in the methylation cycle.

In the meantime, getting more amino acids into the body should help to raise their levels in the cells. It may be the taking a mix of free form amino acids that is well matched to the relative amounts of each amino acid that the body normally needs would help in this regard, though there is the issue of what the gut bacteria will do to interfere, and there is also the issue of whether a person with CFS needs a different mix of amino acids than does a healthy, normal person. I would suspect that they would, because the process of burning amino acids in the mitochondria is probably somewhat selective. Some amino acids may not feed into the furnace as well as others in CFS, and some don't interconvert, and that may throw off the relative amounts that remain.
Is Rich correct? I don't know and I'd like to find out.

I spoke with one of the researchers at the International Nutrition Research Center that developed SONFormula /MAP. Their research goes back to 1974, most of the early publications in Italian journals, none of them available online free. I learned from this researcher that their research disproved some ideas that had been in circulation for a long time but never systematically tested. They measured net nitrogen utilization (e.e. how much eaten, how much comes out in stool and urine) and discovered that a certain ratio of essential amino acids was optimal because nothing (or 1%) came out. They were also able to determine that protein powders provide the least useful protein, such as whey & soy proteins.

Their main interest in the past was treating people with malnutrition, such as elderly who don't eat and anorexics. Their recent interest has been athletes, who are using the product to improve lean muscle mass, and weight loss, because a dieter can get all the aminos needed for their daily requirements with fewer calories than by eating meat, fish, poultry, or vegetable protein. They knew nothing, zero, nada about ME-CFS. They did say that clinicians using their product with "chronic fatigue said their patients improved but did not get well."

So, being putting on my advocacy hat, I sent them some questions and am trying to interest them in doing a study with us. Perhaps if 8-12 people on this board are interested, we can do our own preliminary study. I can get the product at under 50% of the retail price, not counting the shipping costs.

You can get more information, including a bibliography, at this site: http://www.sonformula.com/

I just did the questionnaire on their site and, apparently, if I were healthy, I should be eating 7 oz more meat, fish, poultry than I do, or taking 10 tablets a day.
Janis
 

dannybex

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Dannybex, can you give the full (proper) name of the Genova Amino test if you have it? I find a lot of these 'bizarro' tests (they are bizarre and unheard of by me at least) are so confusing that I don't know what I'm looking for exactly without a specific name. I've noticed these companies have some similarly named tests, and I don't want to get the wrong one if I decide to do the testing. Thanks.
Hi Kerrilyn,

I got this when Genova was named "Great Smokies". The lab test back then was called "Amino Acid Analysis (Plasma)". Not sure what it's called now. :confused:
 

dannybex

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Hi Willow and all,
I know Dr. Yasko's theory that low aminos are due to gut dysbiosis. It makes some sense, in that certain aminos can feed them. However, several things keep me from thinking this is the whole problem.

  1. many people have dysbiosis without having low aminos
  2. my CDSA (Genova) and my Metametrix DNA stool test came back without any parasites, fungal or bacterial dysbiosis. The only thing indicating a possible irregularity was organic acid testing. But although a few individual values were high, the patterns of high values indicating particular types of dysbiosis were not evident.
  3. I did think that perhaps gut biofilms were an issue for me and I have been on the biofilm protocol. I have not tested aminos since doing that protocol.
That must've been frustrating Janis...to have the tests done, esp the new Metametrix profile, only to have them come back basically 'normal'.

But the biofilm issue is a very interesting theory. That, and possibly a buildup of mucoid plaque? What are you using and/or how are you addressing the biofilm issue?


Rich believes that PWC's have low aminos because they are burning them for fuel in the Kreb's cycle.
Have you ever tried the 'Coenzyme A' supplement? I wonder if this would help address what Rich is talking about. Also, I wonder if we burn so many proteins because we're often on such a low carb or especially low 'sugar' diet...even natural sugars, like raw honeys. I was just reading yesterday about how minerals are absorbed better if taken with some sort of fructose or glucose...which goes against most everything I've read before, not to mention the constant advice to avoid sugars in general. But the body does run on glucose (among other things of course) and if we're not getting enough, would we then burn proteins and fats for fuel?

Sorry, I'm no scientist...hope that makes some sense.:confused:
 

kerrilyn

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Hi Kerrilyn,

I got this when Genova was named "Great Smokies". The lab test back then was called "Amino Acid Analysis (Plasma)". Not sure what it's called now. :confused:
Thanks. I remember everyone talking about Great Smokies years ago, didn't realize it is Genova now. I'm waiting for Genova Diagnostics Metabolic Analysis Profile to arrive, I think it may be similar, except it's urine not plasma.
 

Dr. Yes

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Amino Acid Testing
Several of you have asked about this. I have gotten covered on Medicare for both Plasma Amino Acids and for Urinary Amino Acids. I used Doctor's Data. However, Metametrix and Genova also have good tests available. In fact, Metametrix has the best interpretation and the best support.

To get coverage, you have to have an MD or DO order the test and use the right Dx and CPT codes. We used the code for protein/fat/carb malnutrition and CFS. On the repeat, since I had some irregularities, I also put in a code for those. (I think one was hypermethionuria). I have Medicare and an Aetna Medicare plus and both paid.
Janis
Thanks JanisB! :Retro smile:
 

aquariusgirl

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IV aminos vs. pills

Janis
do you still feel you need supplemental aminos on top of your weekly IVs?
haven't they brought your AAs into range?

Also, did you not get any addtnl excitotoxicity with the Aminosyn formula?
It definately seemed to do a number on my brain.
I am thinking of switching to FreAmine.