Some things that I have linked the past couple months and started to formulate a plan
and it may require a nutritionist consult.
MTHFR:
I have a lot of research on this from autoimmune lectures. I need to dig it back up. Most importantly I'm going to be purging my folic acid vitamins for ones that have methylfolate.
Sulfation Problems:
I have considered this intuitively from the fact that the plants I have massive reactions to all have sulfur in common, many have oxalates and/or high histamines in common too. I tried to take molybdenum to counter it before but didn't notice much difference. I don't get as bad of a smell out of my pours, but it's still there. I do love garlic, onions, and dark greens so this is something I'd like to crack. Some research says ornithine, manganese, zinc, carboneine, and thiamine will help, but still says to avoid the sulfates.
AMD1 Deficiency:
It has to do with ATP production in the skeletal muscles. I did notice before that a lot of my neurological issues halted with this supplement I took when I could afford it that was for mitochondrial energy. AMD1 specifically causes people to: fatigue faster than normal people, muscle pain, muscle cramping, exaggerated muscle weakness, progressing to rhobdomyolysis (destruction of muscle) with exertion. Long term effects can lead to nerve damage. This absolutely explains the temporary paralysis when I try to clean or walk and why I went from being able to do 25k steps a day to 3k once a week. I used to body build now the more used areas of my body are atrophied. My cortisol is also chronically high (probably an adrenal thing), this also causes muscle destruction via consumption of muscle instead of fat for energy.
The quick fix for this condition is D-Ribose. Some through the day for basic energy and high dose before labor/exercise. I decided to just try it since a “sugar pill” won't hurt me and it is also used for Chronic Fatigue and Autoimmune treatment. I do one 1.5g tablet when I wake up and when I feel like I'm feeling the weakness. Then I go up to the workout dose of 4.5g if I'm going to do something physical.
Results:
– I haven't felt this baseline happy and energetic in a long time.
– My endurance is up to the point I can do tasks without temporary paralysis.
– Neuropathy has lessened, only one incident in a month.
– I have not needed to nap the days I take it; no more sleeping 16 hours.
– I can pass the ataxia tests again. I did these with tape on the floor of my kitchen.
– I am back to dancing and singing through the day where I could not muster the energy to even with coffee and energy drinks.
Creatine monohydrate is another thing that appears to help the condition, for longer periods of time than the fast burn sugar D-Ribose. It is also safe to use, I haven't found any adverse affects for a short term test. I plan to look into it further, I'll ask someone at a gym or supplement store if no nutritionist is available.
Complications:
There is an increased risk that statin will cause myopathy. Anesthesia has the potential to cause malignant hyperthermia, an uncontrolled increase in body temperature, and permanent muscle damage. In most cases where myopathy is present, a second muscle disease is present and symptoms are worse than either disease in isolation.
BH4 Deficiency:
This is the big one I am digging into. It presents almost as PKU, but not as severe as actual PKU since it seems to be nutritionally controlled. The fun part is that I'm a carrier for PKU, a gene for BH4, and MTHFR lowers BH4. AMD1 deficiency may even play a role in this because it affects ammonia in the cells and high ammonia lowers BH4. AMD1 also affects purine, which is needed to create more BH4. The combination of BH4 and AMD1 deficiencies and MTHFR all seem to equal a major hit to BH4.
Some of the things BH4 deficiency causes is intellectual disability, progressive problems with development, movement disorders, difficulty swallowing, seizures, behavioral problems, and an inability to control body temperature. As well as plays a role in thyroid, energy, and methylation. I've gone to various doctors about the difficulty swallowing, seizures, movement issues, and inability to control body temperature (90-97 now; it used to be up to 100 as a kid with no other sign of sickness present) with no answers.
Treatment of BH4 deficiencies consists of THB supplementation (2–20 mg/kg per day) or diet to control blood phenylalanine concentration and replacement therapy with neurotransmitters precursors (L-DOPA and 5-HTP) and supplements of folinic acid in DHPR deficiency. It could explain why I felt better on the shilajit, which is folinic acid, it has actually sped up my healing during infections.
These people will do best on small amounts of very high quality protein, and lots of methyl folate (here is the methyl form of folate from MTHFR again). The main way to increase BH4 is by recycling it with folate, niacin and/or vitamin C.
New BH4 can be made from the purine GTP, so high purine foods may be helpful (also are high in
Phenylalanine). Also, the body makes ammonia when it processes protein, and the BH4 pool is depleted when it detoxes that ammonia. Limiting dietary protein to the RDA is the most effective way to keep ammonia levels reasonable. The idea becomes: Find meats that are lower in protein, low in Phe, and high in purine (the autoimmune will benefit from high protein, collagen, and fat) -- they must be molecularly balanced for healing for all my conditions with least damage to another.
The diet to control Phe levels is in opposition to what helps control/treat Hashimoto's so this is what makes me confused and has gotten slightly over my head. It seems like to help one I have to worsen the other? This is why I want to consult a nutritionist who has some experience in this. When I made all of the lists of things that help each thing individually as well as my discovered allergies it appeared that there was nothing I could safely eat.
Vitamin Conversion and Binding:
The genes that give me issues converting from plant mineral to bio-available forms and binding issues are probably responsible for why high dosing supplements for those didn't work to raise my levels as expected. This makes me wonder about the possibility of shots.
Vit D3: I was taking 10k mg/ day and didn't see my levels go above 25. Autoimmune lectures have said optimal levels are 80. Do I go to 20k mg/day or try liquid?
B12: I have taken up to 2g/day of methylcobalamin, which is the form needed for MTHFR over cyanocobalamin. My levels stay around max 400 even when I take methylfolate and the other B vitamins. I'm trying to hit 800, which is the recommended level for Hashimoto's to function properly, esp getting the metabolism (and ATP) to function well. I'm unsure what to do in order to get it higher.
Retinol: I haven't gotten the vit A checked, but with conversion hindered it reinforces my need to get back to eating liver and other organ meat. It also makes me wonder if that plays a role in my food sensitivities, many of them are also high in beta-carotene.
Ferritin: It is never severely low, but it has been consistently below the recommended 60-80, even when I do liquid iron with vit c. I have since switched to cast iron cookware as I've heard that it helps. If I'm still on the low end, I have just heard in a lecture I took last week that manganese is probably also low. Raising the manganese should raise ferritin.
