Where is the inflammation coming from?

Описание: Everything has taken a back seat to figuring out where the high levels of inflammation are coming from and how to lower them.

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My health started to majorly deteriorate in early March 2020 (though I had had some issues prior) with a fever, sore throat, cough, and shortness of breath. After a couple weeks, I was treated for a sinus infection, which I get every year. I continued to get worse and was tested for COVID 19 in early April, ~30 days after my first symptoms. It was negative.

I was hospitalized 3x in 2020 with bilateral pneumonia. I was also found to have tracheomalacia in December 2020, meaning my trachea collapses when I exhale. Before I could get it surgically repaired, they found a tracheoesophageal fistula, a hole between my trachea and my esophagus. That was surgically repaired in April 2021. May 2021 I went to the ER and was found to have a right calf DVT and bilateral PE's. I was on Eliquis for 6 months, further delaying the repair of my collapsing trachea.

In December 2021, I had a right heart cath (RHC) with 5 minutes of exercise which showed the blood returning to my heart had a higher percentage of oxygen with exercise instead of a lower one (impaired oxygen extraction) as well as mild pulmonary hypertension. This was actually my turning point. After doing some research, I started taking mitochondrial support supplements. That, combined with wearing oxygen 24/7 and taking Mestinon, has me MUCH more functional than the first 18 months of this journey.

A cardiac biopsy showed mild lysosomal toxicity, hypertrophy, and fibrosis, among other things. My stroke volume continues to decrease while my ejection fraction remains stable. Still no explanation ofr any of this.

My EMG/NCS showed “modest motor unit potential changes of decreased amplitude, reduced duration, and minimal polyphasia,” consistent with myopathy. My QSART showed increased latency of the distal leg and foot, with decreased sweat production of the foot as well, which is seen in small fiber neuropathy.

After 3 years of having pulsatile tinnitus, I finally got the tests I needed and found out I have fibromuscular dysplasia. In my case, it's presenting as beading in my carotid and vertebral arteries as well as small aneurysms in my carotid arteries. Further imaging did not reveal any other affected areas.

Whole genome sequencing revealed two conditions, Antithrombin III deficiency and Spinocerebellar ataxia 27b. The hematologist does not think I have the former based on history and lab results, and I have not yet seen a specialist for the latter. It doesn't explain my most life altering symptoms and is low on my priorities right now.

I have something wrong with almost every system in my body. I'm just trying to make the best of what I have.