Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Does anyone have experience/knowledge of Aminoaciduria (high amino acids in urine)?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by BeautifulDay, Sep 2, 2017.

  1. BeautifulDay

    BeautifulDay

    Messages:
    88
    Likes:
    339
    My doctor tested me at the hospital for amino acids in plasma and urine. I came up high on some in plasma and I was high on 30 of them in urine.

    Example:
    Histidine urine 11083 umol/g creatinine, range 303-1820.
    3-Methyl-histidine urine 1852 umol/g creatinine, range 92-323.
    Serine urine 2962 umol/g creatinine, range 126-585.
    Aspargine urine 1523 umol/g creatinine, range 23-286.
    Glutamic acid urine 378 umol/g creatinine, range 0-83.
    Glutamine urine 7715 umol/g creatinine, range 188-836.
    Glycine urine 8546 umol/g creatinine, range 388-2261.
    Alanine urine 2227 umol/g creatinine, range 73-604.

    Any thoughts? Thanks!!!
     
  2. BeautifulDay

    BeautifulDay

    Messages:
    88
    Likes:
    339
    I should add:

    My family is being studied at a University Hospital's Mitochondrial Disease Clinic. The issue is not a mitochondrial DNA mutation, but in rDNA that transports things into mitochondria and out of it.

    For now, it's pretty much about treating the symptoms (or the latest issue) as they arise in each of us. Because mito issues can impact any part of the body, anything and everything can go awry.

    The biggest change with having the heading now of Mitochondrial Disease instead of Chronic Fatigue is that doctors now take our symptoms seriously. If one of us goes to a doctor with debilitating fatigue or unusual pain or just an off the wall symptom, we no longer see the eye roll.

    The other change is that we all got full testing for issues that MitoD can lead to. Example, brain MRI's led to finding that our 8 year old daughter has a Chiari Type 1 malformation that can happen in some with Mito. It puts our sons high functioning autistic spectrum into light. His improved greatly over the years and is now taking high school physics and on the college track. That often happens with mito autistic spectrum kids (early big symptoms of ASD and then improvement).

    We are also on MitoMix which our insurance pays for from the compounding pharmacy. They even send it directly to our daughter at college on ice every two weeks. Essentially it's 50 mg riboflavin and 208 mg ubiquinol twice daily (adults). We agree we like the bubble gum flavor is best.

    Years ago I stopped eating beef and pig. It helped with some of my symptoms. I can't have iron or copper (it makes me feel drunk, lose feeling in my head, and then I start to act drunk - really drunk, and then I feel like my whole body is being poisoned and I'm dying). In addition to the MitoMix, I take Vitamin D3 daily to get it into normal range and sublingual B12 daily.

    I'm pretty close to vegetarian (little chicken and fish) and still my body can't handle the amino acids and I end up with them in my urine. I also have diabetes insipidus (not related to sugar at all). With diabetes insipidus I am thirsty for water all the time, so I pee a lot. It's believed my thirst is my body trying to get rid of the build up of things that my body can't process and that just end up poisoning me.

    I am on the MIND diet for my cognitive loss. It's helped a lot. But when I get sick, have low energy, overdo anything, etc.... the major dementia comes right back. But I don't take my prescription for Donepezil (Alzheimers Meds) because of side effects and it only last 3 years and doesn't have the positive results of the MIND diet. I don't have Alzheimer's, but cognitive issues due to the MitoD which was originally misdiagnosed at Chronic Fatigue.

    My question about the amino acids is because if I could figure out what in my cycle was broken or what has worked for others would make a huge difference. For example, I had POTS when young and now I have low pulse pressure when standing (and faint when in line). Knowing this I can work around it. I have to walk at a certain fast speed to not faint (faster speed keeps the blood flowing to brain). If in line I hold a basket, just in case I go down (it steadies me) and i keep moving my feet and legs to keep blood from getting stuck in legs and not up to head.

    Knowing how to get around symptoms helps. When my gastroparesis pops up, then no more big bowls of beans or blueberries, soup for two days, and lay on left side when pain appears.

    So if you have any ideas on my amino acid issue, I'd really appreciate any help. I'm thinking finding a get around or make better for that one would help with lots of my issues. I do not take any other vitamins or supplements than those mentioned above. Thanks!
     
  3. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,068
    Likes:
    43,740
    Were creatinine levels normal?
     
  4. BeautifulDay

    BeautifulDay

    Messages:
    88
    Likes:
    339
    Yes. My last test for creatinine was 0.8 mg/dl (range 0.5-1.0)
     
  5. BeautifulDay

    BeautifulDay

    Messages:
    88
    Likes:
    339
    Despite the fairly low protein in my diet, my blood test found high protein
    Total Protein 8.6 g/dl (range 6.3-8.2)
     

See more popular forum discussions.

Share This Page