Does anyone have any thoughts on the urea cycle?
Just wrote the piece below on the Mayo Clinic connect board. I've been meaning to post here for a while but everything takes so much energy.
My Fluroquinalone journey started in 2007. Got given a course of cipro for a wicked sore throat. The throat cleared up nicely and that was that.
Except the i got another sore throat, so another course of cipro.
And then another and another.
I started to get these arthritis like symptoms and here's where I got unlucky. About a decade before I got Iritis, the whites of my eyes turned red, regular air pressure hurt, wind was excruciating, so I went to the hospital eye clinic.
They asked if I had recently had food poisoning, which I hadn't, and said I should go to the Sexual health clinic.
I was like 'It's my eyes, not my...'
But they were adamant. It turns out that one of the common causes of Iritis is Chlamydia, which I didn't have, but I was warned that I was now at risk of Reiyer's syndrome, or reactive arthritis as it is now known.
So when I pitched up with my new arthritis like symptoms, which seemed to getb worse when I had a sore throat, a clever doctor, after a through history, but two and two together and came up with a treatment plan.
Celecoxib for the pain and stiffness, a 90 day course of doxycline to knock any subclinical infection begind the reactive arthritis, and strict instructions to take a course a 5day course of cipro 500mg b.d., whenever I got even a hint of a sore throat.
Well, the celecoxib was a miracle drug. It no longer took two hours to straighten my back in the morning, the doxy I took daily for three months. The link between the sore throats and the 'reactive arthritis' got stronger and stronger, the celecoxib helped with the pain and stiffness but did nothing for the fatigue. And when I say fatigue it was like I had been slipped a pill or shot with one of those dart guns used by animal control.
This went on for four years, nearly 5. I took dozens, scores,.of courses of cipro.
Then the sore throats stopped (yay) and so did the cipro.
Then I got diagnosed with chronic fatigue syndrome. Then, some years later, with 'Atypical Chronic Fatigue Syndrome'.
It was a retail pharmacist in 2017 chatting whilst filling my prescription who asked if I had ever taken cipro.
This, eventually, led to a diagnosis on FQAD, but that wasn't till after the pandemic.
My response to the pandemic was the alternate day fasting. It seemed that to survive COVID you wanted to be either younger or slimmer. I didn't know how to get younger., but I did no how to get slimmer.
I had tried the 5:2 diet where 2 days a week youbinlybate 500 calories and struggles with it. For two days a week my entire day was all about how to maximise the pleasure to be gotten from eating 500 calories.
So this time I thought it would be easier to just not eat, and every other day was easier than two days out of 7.
Thus began the most productive two years of my post cipro life. For three days a week I could take being normal, turn up to a job, be me. Sure for four days a week, Tuesday Thursday Saturday Sunday, I barely got out of bed, drank only water, but that was a price worth paying . I even got COVID and shook it off. And then I massively over did it. An opportunity arose and I tried to work solid through the weekend.
My worst crash previously had required a month of rest to recover from. But you m still bouncing along the bottom since then. Which sucks. No three days a week, not even one.
I have tried everything, most recently NAD+ precursors, which made me worse.
Which was interesting. Together with my bad reaction to trying protein supplements this caused my friendly LLM, Claude, to flag that there is research suggesting that long COVID also impacts mitochondria.
But now I've run out of steam, so please forgive my laziness/efficiency for pasting what I wrote on the Mayo connect board...
I look forward to tapping into the collective wisdom of the group.
So my understanding is that long COVID can reduce mitochondrial ATP production across the board.
The urea cycle, the process by which the body converts the waste product of protein breakdown, ammonia, into urea is highly ATP intensive.
Thus the urea cycle can be damaged without any long term damage to the liver (which is good news)
The bad news is this can lead to relatively mild ( relative to alcohol related liver disease) hepatic encephalopathy.
More good news, this is treatable.
More bad news, doctors are taught that urea cycle disorders are either genetic or as a result of a damaged liver.
Yet more good news, the support the urea cycle needs is available without prescription.
By eating the amino acids that your body expends enormous energy manufacturing, you save it that effort, the idea being that that energy can now be used deploying those amino acids in another ATP intensive activity, converting the ammonia into urea.
Then there are ammonia scavengers which will remove ammonia from your system using methods that don't involve ATP.
If you have the funds and a functional relationship with a physician who knows more about this than you do, the speak with them before ordering a bunch of amino acids and a food preservative.
And yes, the cells that make the amino acid substrates for the urea cycle, hepatocytes, are the same cells that convert the ammonia into urea, so, theoretically, the ATP saved in one intense process can now be deployed in an environment where there is enough substrate to convert the ammonia to urea.
So if you find eating more protein makes you worse, more tired, more irritable, less likely to make memories, or remember old ones (how many doctors understand that difference?), and/or NAD+ precursors make you worse, these are signs that you may, underscore may, have a urea cycle issue.
If you can eat double your usual protein and not worsen your situation it is highly unlikely that this is one of the issues affecting you.
If it is, manage your expectations.
This doesn't fix mitochondrial damage. It does mitigate the damage in one very specific, very necessary, process.
So it ain't a cure, no magic bullet, but possibly the foundation on which you can start to rebuild.
Good luck