I’ve been convinced for the past year that I have a problem with ammonia elimination pathways, which are mostly included by urea cycle disorders.
I noticed an improvement of my symptoms while taking a certain tincture that has ammonia neutralizing effects, when I started taking it sometime in March 2019. This made me even more convinced at the time that I was on the right path to cure myself of my headache.
I noticed the biggest improvement of my constant headache and neurological symptoms (gait issues and muscle tension) for the first time in April 2019, when I would eat only veggies or rice with veggies in the morning. I did it to help my sister eat better as we wore both tracking our food intake via an app. She would eat fruits in the morning, and I would eat veggies. The result was that for the first half of the day I would be mostly free of my complex migraine symptoms. My symptoms would get worse after lunch, when I would eat some goat cheese with a salad. The full on disabling headache would come only in the evening, after dinner. At dinner I would eat a lot meat in order to reach the target of 45 g of protein per day. And so I would be miserable after 7 p.m.
For all these variations in my symptoms I had perfectly plausible explanations: the tincture against ammonia was working, but my being active during the day was increasing these levels and the tincture was not enough; I was better half a day because I bought some very expensive migraine glasses that filter the blue and green lights; I was suffering terrible in the evening because of all the physical and cognitive stress that build up during the day. Physical activity increases ammonia and glutamate levels , and inflammation in the body. Migraine is a matter of glutamate + inflammation in the brain.
The list of perfectly plausible explanations was very long and it made sense. I was testing these various hypothesis and was also thinking about my protein intake, but didn’t go as far as testing my ammonia levels or amino acids in blood.
That was until November 2019, when one morning I had nothing left to eat but some beef steak. I ate it. In an hour or so, the headache and complex aura symptoms hit me the hardest. I couldn’t believe it. It was the first time since April that I ate in the morning my usual dinner meal. Next day I tried again, to see if the same thing happened. It did. I experimented that first week every day. Then I stopped eating meat for the next two weeks. I felt like myself more often (improvement of depersonalization symptoms).
Then it was clear : high protein intake was the cause of my migraines and my neurological symptoms. So, I was 90% sure that I had an urea cycle disorder that involves ammonia buildup. I went to a lab to get tested and paid for the tests out of pocket. All levels came back negative, but this is common in mild UCDs (urea cycle disorders).
Why my focus on UCD? When you search online for protein intake and neurological symptoms, this is the first thing that pops up. I even read this paper on UCDs and differential diagnosis. It mentioned several other possible diseases, I checked out symptoms for most of them and it didn’t seem to be a fit for any of them. It’s clear that I don’t have any medical training. I didn’t have any idea that UCDs are a part of a group of genetic diseases that are called metabolic disorders.
Sometime in January 2020, while researching UCDs, I stumbled upon an article that mentioned UCDs in the context of the many known metabolic disorders. Among the symptoms described for pretty much every metabolic disorder, I came across “sweet smelling urine” or maple syrup like smell in urine, earwax or sweat. That’s when it hit me.
The first time I noticed a maple syrup like smell in my urine was in 2018, right around the time I had my severe flu like symptoms/sepsis-like symptoms (never had cold and clammy skin before during a flu episode, or actually thinking that I might die from it – a thought that had no fear behind it, more like a realization). This smell comes and go, lasting 1 day most of the time. It is preceded by a few days of a fruity smell in my urine.
I also remembered the nutty sweet smell of my earwax that would just come and go, noticed for the first time in the spring of 2016. Probably it happened ever since but I stopped paying attention to it. After all, I had bigger issues- terrible constant headache, cognitive issues, horrible chronic fatigue. Who would think that a nice smell of the earwax might mean something? I just thought “what a funny thing!”.
I am currently waiting to find a doctor who can help me send a blood sample to a genetic lab.
I just read today about another person who has Lyme symptoms (flu-like symptoms with fatigue) only 2-3 days per month and otherwise she is feeling good all the time. After a year or so of antibiotic treatments. I read several other updates from people with Lyme and, when someone is at this stage in their healing, they already have their life back.
I am at this point too in my Lyme journey, since September 2018. Only 2-3 days per month with flu-like symptoms, like clockwork. But I am not well. I live my life in bed. I still have no sense of “being myself”. I still deal with derealization. I still have difficulty walking, tense muscles everywhere, tension headache and every time I do some physical activity I am worse. I still have insomnia every night. These are typical consequences that people with MSUD have to live with after their metabolic crises.
The “migraine” is gone since I reverted back to my lifelong vegetarian diet, with very little protein (protein high in BCAA- meat and dairy and nuts) in it. At least there’s that. I’ve tried for two years to get rid of my migraine and while certain things helped, it never went away completely and reliably. So, migraine free since January 2020.
I’ll write another post with what is MSUD and how my symptoms have coincided with a metabolic crisis first in 2015 (first severe flu like episode), then in August 2016 following a strong dose of preventive antibiotic treatment, in November 2016 after a month of self imposed physical activity daily, and lastly in May 2018.
I’ll also explain how it was possible to go undiagnosed for so many years, because this is typically diagnosed in infancy or in childhood, mostly between the age of 2 and 8 years old.
What saved me and my brother has been our total rejection of meat since we were 1-2 years old and my mother started to feed us meat.
Now, the “funny” and “surprising ” story of how mother would find spoiled meat chunks in our pockets when doing the laundry or spoiled, funny smelling meat behind the furniture, makes sense.