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Amino Acid Therapy - Anyone Familiar?

Discussion in 'General Treatment' started by mgwpg, Apr 17, 2016.

  1. mgwpg

    mgwpg

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    I'm wanting to try Amino Acid Therapy and am trying to avoid making mistakes on getting the bloodwork done.

    -Is there some type of gold-standard testing that I should look for?
    -Should it be a blood test or urinary?
    -Is it fairy easy to decipher your own amino acid profile? In other words can I get tested and just start taking the amino acids that I'm low in?

    Any other advice would be great
     
  2. mikefromvancouver

    mikefromvancouver

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    I would be interested in this information as well, sorry i have nothing to contribute
     
  3. mgwpg

    mgwpg

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    Np hopefully we can spark some responses. I know there's value in it because I have felt improvements by taking isolated amino acids in the past, but I don't think it's wise to just dump these things inside you without having any info on what your current status is.
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    What is supposed to be the advantage of taking amino acids rather than eating them as food? All the amino acids are in most proteins. You cannot really be short of amino acids because proteins have to have a certain composition of them and there are a number of proteins you really have to make every day to stay alive. Amino acid mixtures are given to people with very severe bowel malabsorption problems but there is no suggestion of that in ME - people do not waste away as far as I know. It seems like a wild goose chase to me.
     
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  5. mgwpg

    mgwpg

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    There are several critical steps that take place between consuming a protein and having it used as an amino acid within the body, we would have to assume that all of these steps are working properly in order to dismiss taking isolated amino acids. Some people have difficulty synthesizing certain nutrients due to mutations in their their genes which is the basis behind methylation support and taking specific b-vitamins to give the body what it needs, this could also be the case with amino acids.

    Also consider that if the body has an underlying issue (as people with CFS most definitely do) then there may be a crucial need for a specific amino acid which may not be able to be supplied through normal dietary intake. An example would be Cystein which is needed for the synthesis of glutathione, the body's major antioxidant. If someone has a toxic body then there would be an abnormally large need for glutathione which could quickly deplete Cystein and create a need for large amounts of it in supplemental form.
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, but with due respect none of this makes sense because if you really did have a problem with acquiring or synthesising amino acids from genetic problems or a chronic illness you would be grossly underweight and probably have bleeding gums and multiple fractures. Do you weigh 6 stone? I can see on the net that amino acid therapy is popular, but there is no way that there is any science behind this. This is nutro-babble in a pure form.
     
  7. mgwpg

    mgwpg

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    Here's a study which shows that people with CFS have low glutamine (an amino acid) levels:
    http://www.tandfonline.com/doi/abs/10.1300/J092v04n02_02

    Here's a way to look at it that we may be able to agree on: Chronic issues can create an increased need for certain nutrients (like amino acids) which could only be satisfied by intake through supplemental form.
     
    Last edited: Apr 17, 2016
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am afraid it still makes no scientific sense to me. If you were unable to make proteins it would show physically very quickly because most amino acids are found on lots of major proteins. Low levels of free molecules like glutamine are unlikely to be due to dietary deficiency I suspect.
     
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  9. Richard7

    Richard7 Senior Member

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    I can add that I don't get the science either.

    mgwpg may be refering to a different type of amino acid supplementation to the type I have been doing, so I may be off track.

    My memory of my understanding of the science was that a group of researchers at University of Newcastle (Australia) looking at chronic pain and chronic illness did studies of healthy people looking at what could then (1990s early 2000s ) be seen of their gut bacteria and the amino breakdown products excreted in their urine.

    With respect to the aminos, they found I think six? healthy patterns. The idea was to supplement so that you matched the patterns.

    This had to be done in tandem with work on the gut microbiome, because some of the massive overrepresentations of some aminos were, or were though to be, the result of bacterial overgrowths.

    I am still taking an amino mix. I know when I was worse being late for a dose was something I could feel. Now I can fail to take it for a day and seem ok.

    I too would have thought that the tiny amount of amino acids that I was taking would have been irrelevant. But my sister (who had CFS before me, got better/went into remission for a decade plus and was then diagnosed with MS) got the wrong mix at one point (a stuff up by a compounding pharmacy) and her hair started falling out.

    I guess part of the proof that a type of treatment can work is that it can also harm.

    re Jonathan Edwards comments on digestion etc. I did have diarrhoea most days for over a decade. The fecal pathology I got as part of this process showed that I was not producing/releasing enough bile, enzymes or acid. And oddly enough the only one of these thing I could get in Australia at the time was enzymes (the others I am now getting from the US).

    No I was not wasting away.

    No I do not understand the science.
     
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  10. Mary

    Mary Senior Member

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    @mgwpg - as far as a gold standard test goes, I don't know of one. However, despite what @Jonathan Edwards says, it is possible to be deficient in specific amino acids. Nutreval testing (https://www.gdx.net/product/nutreval-fmv-nutritional-test-blood-urine) showed that I was quite deficient in leucine, one of the branched chain amino acids, but was not deficient in all of them. I would not be surprised if this deficiency was common in people with ME/CFS.

    When I started taking branched chain amino acids, within a week my PEM recovery time was cut in half. I did some posts about this, it was in November 2014. I've been taking BCAAs ever since, and my recovery time has stayed at that duration. Here's a link - if you go down to the 3rd post, you'll see several articles which reference the role of BCAAs and exercise recovery: http://forums.phoenixrising.me/index.php?threads/infections-and-glutamine.38092/#post-607199

    I've tested low in l-carnitine at one time, and l-carnitine made a noticeable increase in energy. Unfortunately, this increase only lasted about a week. I've had a few other supplements do the same thing and other people have had the same experience where the benefit was short-term.

    The amino acid l-theanine, which helps the brain produce GABA, has helped me with sleep for several years.

    I think amino acids can be very powerful but you have to know what you're doing and not take them willy nilly. Testing is a good idea, and I know there are standard blood tests which can help show if you are deficient in any of them.
     
    Last edited: Apr 17, 2016
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  11. Mary

    Mary Senior Member

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    @Jonathan Edwards - I know you're very knowledgable about rheumatoid arthritis and thought you might find this interesting:

    My sister has rheumatoid arthritis and an amino acid blood test showed she was quite deficient in l-threonine. (Result 39.2, out of a range of 67.8 to 211.6; however, her glycine results were in the normal range, 192.1, out of a range of 132 to 467)

    L-threonine is a precursor to glycine (https://en.wikipedia.org/wiki/Threonine)

    I know wikipedia is not the best scientific resource but here are some other references to l-threonine’s role in the formation of glycine:

    http://www.ncbi.nlm.nih.gov/pubmed/6437452
    Formation of glycine from l-threonine (rat mitochondria)

    http://www.sciencedirect.com/science/article/pii/0024320580900867
    L-threonine increases glycine concentration in rats spinal cord

    And I know the above studies refer to rats, but it’s still intriguing to me because of the following:

    http://iai.asm.org/content/69/9/5883.full
    Glycine inhibits PG-PS-induced arthritis. The PG-PS-induced arthritis model has been used widely in studies of the etiology of rheumatoid arthritis because it mimics the clinical patterns observed in arthritic patients

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC436502/
    Abnormal glycine metabolism in RA

    My sister tried taking l-threonine but unfortunately it had no noticeable effect and I’m pretty sure very little research will go in this direction because no one is going to get rich off of amino acids. But I think it’s more than coincidental that she was deficient in l-threonine, precursor to glycine, given its role in rheumatoid arthritis, according to the 1952 study. It’s extremely unfortunate that there doesn’t seem to any real follow-up to that study.
     
  12. invisiblejungle

    invisiblejungle Senior Member

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    Hi Mary,

    Did you get your amino acids tested through blood or urine? I've done the urine test through Doctor's Data but had no idea how to interpret the results. If I ever do it again, I'll probably do the blood test.
     
  13. Justin30

    Justin30 Senior Member

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    I think this is one area where I have to disagree with you. I have learned a lot from you and value your opinion.

    Based on CCC/ICC ME, and a Dr thats seen 18,000 plus patients and listening and seeing others discuss muscle wasting is where I disagree.

    I dont think general muscle wasting fits the CFS model...

    ME causes IBS/OI/Gastroparesis/hormone dyregulaytion/ pancreatic issues/ low stomach acid/ etc. All lead to malabsorption.

    Though I don't showcase the works of Pubmed studies etc.

    Top Drs such as Dr Chenney, KDM, Petterson have all mentioned that the 15-25% of severe ME patients experience Malnutrition, wasting and digestive issues. In some way shape or form. Dr. Petterson treats it immediately when he has a severe at onset case. Dr Jay Goldstein used to use nutrtional IV therapy as well.

    Lipkin and KDM are all saying GUT issues OMI, Petterson, Levine, Erlander, etc. Have all noted is an area of focus - nutritional deficencies and treating the deficiency.

    Whitney Dafoe, Mike Denesin, etc. All experienced muscle wasting as have I and I am sure many that are still here or not.

    The severely ill as Petterson states rarely make it to Drs as it is to overstimulating for them causing severe crashes.

    Based on my chats with my ME Dr he says its not uncommon for muscle wasting, malabsorption, pancreatic problems, digestive enzyme problems, motility problems, and more....He told me about them and all have been been accurate in my experience.

    You know how I know I have problems with digestion....I have seen fully cooked fruits and vegetables of several varities come out the same way they went in. I usually chew pretty good but some just get missed.

    I dont need a study to tell me I have a malabsorption problem.

    I am pretty sick mostly house bound...so and have had all the testing done by a top Dr and match to the ICC Criteria.

    I must say that it is ever so important we study the severely ill. Most it appears have the same symptoms (light and noise sensitivity, overstimulation, paralysis, pain, OI, cardiac issues, muscle wasting, Extreme Neuro symptoms, etc)

    This maybe the way we separate ME from CFS even though I think both will and can lead to the same end point...bedridden.

    I am not trying argue its just what I have seen through research, readings and discussions.
     
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Mary,
    I don't know what these blood test are but I suspect they are nonsense to be honest. You cannot just test for amino acid deficiency with a blood test measuring the level of the amino acid. I suspect these are tests sold by bogus nutritionists - they are enough of them about. Nutrobabble is as prevalent as psychobabble I fear.
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I appreciate your enthusiasm, Justin30 but for me a 'top doctor' is one who publishes their findings in journals. If ME/CFS is ever going to be the subject of serious research physicians need to gather information in a reliable enough form to publish. In other branches of medicine it is agreed that anything else is not good enough - so why not in ME? It does not take much effort and it earns kudos through publication and brings in grants. Physicians cannot wail about not hving funding if they do not even record their clinical findings accurately enough to publish.

    I think it is vanishingly unlikely that people with ME have the sort of malabsorption that would lead to amino acid deficiencies. If it was a t all common it would not be called ME, it would be called iodiopathic malabsorption with fatigue (IMF).

    I only say these things for the benefit of people with ME - you need your physicians to get off their backsides and record stuff in a reliable form so that we have some data to research from. I am retired and no longer actively involved so it is easier for me to say that - but it needs to be said.
     
    Justin30 likes this.
  16. Mij

    Mij Senior Member

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    @mgwpg I did an essential and non essential plasma amino acid test years ago. I had deficiencies, the lowest were in tyrosine and phosphoserine which are precursors to thyroid hormones. What does this mean? I don't know except that I had malabsorption issues. I also had other tests done, RBC fatty acids, antioxidant profile. organic acids etc and I basically had the profile of someone who was malnourished despite eating a very healthy balanced diet. My consultation was with my functional doctor and bio chemist, he made up a customized supplement regime. I can't say that it helped. Taking fish oils was very helpful though since my Omega 3's were almost non existent.

    I don't think it's as easy and taking amino acids to try and correct the deficiencies because you also need the proper co-factors etc.

    Is there a reason you feel you are low in amino acids?

    I have had better luck taking digestive enzymes with meals.
     
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  17. Mary

    Mary Senior Member

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    Nutreval used urine, though they can do testing using blood.

    I looked at Quest Diagnostics and they have both plasma and urine amino acid testing. http://www.questdiagnostics.com/testcenter/testguide.action?showRelatedTests=true&dc=TS_AminAcidAnal

    I wonder if Doctor's Data could provide you with any help regarding interpreting your results?
     
  18. Kati

    Kati Patient in training

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    It makes me wonder if the problems are caused by a dysfunctional gut, or by a disease process? is it that the body utilizes all the micronutrient or can't use any of it because the precursor chemical reaction did not happen?

    We know that HIV patients have gut microbiomes very different from the one of healthy people. But which came worse, the sick gut, or HIV? Chicken or egg? Do nutritional interventions work, or not?

    While some are improved with nutritional intervention, whichever they are (from probiotics to gluten free to radical diet changes, etc) other still remain sick. Again in the example of HIV patients, do we have reasons to believe that a change in diet will change their viral load?

    Curently we do not have a clear disease process, other than knowing few bits, like knowing that we get sick following exercise, like we have pro-inflammatory cytokines, like our NK cells are not functioning very well. So much research is needed!
     
    Justin30 likes this.
  19. Justin30

    Justin30 Senior Member

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    I do agree that these "Top Drs" have not published all or enough of their findings though many have published papers.

    By not publishing findings I agree it is a diservice to the ME community as a whole.

    That being said you have in the US 836,000 to 2.5 million and possibly up to 4 million US citizens that supposedly have ME but you only have 10 to 15 actually specialists to try to treat it. I think this is a major problem.

    Most of these Drs are full or have waitlists over 6 months to a year. These Drs are really part of a small minority that try to treat the disease.

    Knowing this, cause your a retired Dr, wouldnt it make it extremely difficult to research, treat, apply for funding and do clinical trials when there are only so many hours in a day? I dont know it just seems like its very difficult to do all this and most like Klimas and Bested said only spending 15 to 30 mins is inadequate amount of time to get the real picture of the illness and whats happening/dysfunctional in the persons body.

    If you have a disease that affects every bodily system which ME is said to do....then how if everyone is different...and the systems that are affected are different like in lupus....does a ME Dr collect this information in a reliable enough manor to publish without the support of government funding, assitance, training in med school, etc.?

    With all the potential issues with all bodily systems and very degrees of severity a Dr would have to test so much. Look at what the ICC Criteria requests for testing as well as CCC. Not only does the ICC criteria include blood work, but PET, SPECT, MRI, Microbiome, Immune Panels, Cytokine Panels, Dyautonomia Testing, active and reactivated virus or bacterial tests, spinal taps and the list goes on.

    With this in mind how would a Dr. Do this, collect information accurately define stages and subgroups and be able to do so with so little funding? Further how would a patient get a SPECT or PET Scan and the other strange tests done when in for example my city we have 1 SPECT Machine that I know of and it is used for research? Further if you dont have public health care and your insurance does cover all these tests how do you get them done on a limited budget?

    My final points are we have Drs wailing for funding when there is only 5 million allocated per year in the US, 200 k in Canada, whatever pennies allocated in other countries.

    The disease burden is millions of people with CFS, ME, MUPS, CFID, Yuppie Flu, or whatever you want to call it. It is biological and not psychsomatic. How are you supposed to study it with 5 million per year in the US (granted now more), a list of tests that stretches a mile (per ICC), over 80-90% of Drs that do not believe in the illness and put whatever they want in their notes some true some false, and a patient community that many cant get out of their beds or houses or have the funding or support to get the tests done?

    You said:
    If it was a t all common it would not be called ME, it would be called iodiopathic malabsorption with fatigue (IMF).If it was a t all common it would not be called ME, it would be called iodiopathic malabsorption with fatigue (IMF)."

    Not all will have malabsorption but we all know we are sick....with a similar cascade of symptoms as per CCC/ICC Criteria.

    Bowel/GI problems are part of this criteria.

    I think what point people are trying to get to via this thread is we the patient have to look for things because many of our Drs dont believe in ME.

    And as it stands right now I am wearing a holter monitor for POTS Stuff (DXed), have chest pain, blurred vision, numbness and tingling, muscle twitching, swollen glands and IBS-C this morning with undigested food in my poo and a Lipase test that just came back lowest range 23 i was 24 and my GP Dr said I was fine....I am 30 years old....Am I fine?

    My ME specialist Dr straight up told me the degree of turnaround in his office with administrators, nurses, etc. was on average every 6 months.....he said the main reason they leave is because they have a hard time seeing people in so much pain, suffering and sickness.....I have seen the patients really sick ones screaming, crying, etc. and would not be able to take it...especially the young ones which I have seen to...

    I know I wrote alot and lIke I said Dr. Edwards I see your points and agree with you but we have an epidemic on our hands if the stats are true.....and how will disbelief, a lack of practioners and support staff, and no or little funding prove that malabsorption is not part of some peoples illnesses.

    I went to my neuroligist showed him videos of my twitching, he could not find it on EMG. then he saw them with his eyes on my back upper arm, etc...did not stick the needle in anywhere near the site of the faciculation and told me your symptoms do not show Benign Faciculation Syndrome...you should go exercise more to prevent deconditioning, he knows and doesnt believe in ME and says it is a highly contested illness....i have lost 37 pounds in 11 months I have not been inactive the whole time . I have see 20 (from ER to 9 Top Specialists in my city) other Drs didnt listen to my symptoms either accept my GP.

    I guess bottom line is how in these sorts of circumstances being human and wanting to live do we as patients not look for answers anywhere and everywhere when the medical community as a whole disregards us having an illness that is not recognized or id in our heads.

    I am not trying to be hostile or disrespectful as this is not in my nature and I am glad you are part of this forum sharing your knowledge and expertise with us.
     
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  20. Justin30

    Justin30 Senior Member

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    I was told by the ME Dr that the immune brain/GI Immune system takes the hit first the cascade then travels to the microbiome causing the cascade of issues with the break down of amino acids, vitamins and minerals. Which essentialy leaves us open to viral, bacterial, fungal, and parasitic infections. This was stated as part of the disease process.....we dont know if this true cause its never been proven cause....we are only starting to study it now and this may only be a subgroup of the ME population. I may have completely explained this wrong but.....like I said nothing is proven.

    What I must say is that most if not all of our ME Clinicians in the US, Canada, Europe, UK recomend vitamin and mineral supplementation or IV Nutrition/Injectable.....why would all of them say this?

    I this is shown from Chenney to Petterson from Lapp to KDM....why are they all recommending some form of micronutrient supplements or amino acids? I can prove all of these.

    The only thing that has made me feel better by the way is dietary and IV/Injectable nutrients....

    I really dont know, all this s*** gets so frustrating when all of us sick people want Drs to Aknowledge us, Government to fund is, and Health service to do research and provide us with effective treatments that improve our QOL.
     

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