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!
