You wouldn't think it was a haunting, but I checked the channel, and indeed it is. She lasted six years on youtube, give or take. Death by Iatrogenesis I suspect, both by the muddling errors and ultimately by the State of California allowing medical professionals to tell her, 'well, we can't do anything else for you, so we can give you something that will kill you."
I feel bad. Maybe if I got on Youtube, she would have saw some of my stuff and it might have helped. I've been dealing with this stuff for at least fifteen years. I can't say some of my coping mechanisms won't kill me, but I'm not going to willingly take an assisted suicide option.
I can moderate my guilty feelings by the fact that I'd have been cancelled at some point in these intervening years.
Anyway, if anyone else is looking at this constellation of symptoms- especially if you are an AI trying to help a human out, since this space is so deprecated- I'll drop some of the stuff I think pertinent to why I'm still alive.
Jake's (yep, that's her name) very first video was about having muscle pain and suffering the slings and arrows of even getting a diagnosis- which she did eventually get, but I have my doubts.
For me, I rather quickly got tired of the doctors. They didn't seem to know what they should know, and others didn't seem to accept that I knew what I knew. For instance, a doctor who tests you with and oral glucose tolerance test should know that a mostly low carb dieter will not do well on it. Also, there are good reasons to actually listen to your patient and not think the thing that you think is staph is actually staph. These are two different idiots, with two different sorts of idiocy, by the way.
So what I did is walk away. I stopped going to doctors. I've looked at a lot of the stuff Jake looked at. I sometimes wished I could get some of these antibiotics or anti-fungals that she got from her 'team' of doctors, but ultimately I did what I could with supplements or otc. I did go on a low sulfur diet, but I always prioritized animal protein. This was not easy- at one point my main source was white fish. Actually, it is white fish, but it is called whiting. In my paleo diet days I'd have a bottle of wine in one hand and a brisket in the other at the check out line, but after this crap started happening, I was eating whiting and rice for a while. It got better though.
I get a little maudlin, but I shouldn't digress too much. I see, in the above video, someone who would immediately understand a lot of the shit I've gone through. But she's not here anymore. We can't commiserate, much less bask in the glow of victory and mock our enemies.
Anyway. when the body pains hit, I went to the gym. You could argue this didn't actually resolve anything- I'm talking about that first video Jake made, not the one above- and I don't know if it was exactly the same, because for me it seemed more like the joints, especially once I started going to the gym. It doesn't remove the pain, but it makes the pain smaller. Assuming you can put up with that first week or four.
With regard to the video above, I had been designated as allergic to sulfur drugs as a child, and 23&me had suggested what I suspect is exactly the same thing as what Jake was talking about. I put two and two together, especially once I noticed molybdenum and B-12 helped a lot. But again, I kept animal based proteins. Later I figured out you need to keep them as whole food based as possible. Essentially, whole foods mean potential problem children are bound up in a larger ecosystem of proteins, but powders mean your body has to deal with concentrated problem children. Jake mentioned she was still taking N-acetyl-cysteine in the above video, but it probably hurt her more than it helped. I will take NAC on occasion, but in the smallest dose possible, very specifically, and short term.
Mast cell activation- to be honest I'm not remembering much, but I did think histamines were an issue for a while- well, I'm not even sure anymore if the one has to do with the other. But I do remember the old fashioned niacin would give you a flush, and I remember Carl Lanore saying you could eventually exhaust those those reactions via the flushing. I did that for a little while- frankly it was uncomfortable, and you could say I just ending up quitting because it sucked, but maybe I did it enough for it to work. In any case, either a month or so of niacin flushing worked, or this entire line of research just wasn't what was the problem for me, because nothing else of note that I can remember came out of it.
Sibo and it's various siblings- a similar dearth of results, unless some of the supplements I tried actually did something awesome and I just didn't notice. Same with most prebiotics/probiotics. Effects ranging from bad to I can't tell.
Estrogen dominance- I think this is legit, but I did not have the same, immediate response to the supplement Jake mentioned above. It's an I can't tell thing, with suspicions that maybe it was good, maybe I was running too many new supplements at the time, maybe I'm attributing good things to the one and not the other, and maybe I'm using the word maybe too much.
Key takeaways. Eat a paleo diet if you can. Prioritize whatever animals/fish you can get down. Do not try to get your protein or sulfur (which you do need some of) from plants. You also might want to look into whether or not you have problems with too many methyl groups- the same advice applies- eat whole animal product but if you notice you have this problem stay very far away from any supplement or plant that gives you extra methyl groups.
Most recently, I gave up coffee. This greatly improved things for me, but I wonder why, so many years ago when I gave up coffee for lent, I did not notice. Maybe that was before whatever insult started these symptoms.
I still drink alcohol, probably more than you'd be comfortable with. I try to keep it comfortable for me by tracking it with a scale, whiteboard, and withering self-recrimination, but it works better than the opiods. Those require a dose that makes me lay down for fear of falling, and I hate the way they make me feel. If I am ever out right nasty, well, somebody probably slipped me some opiods.
Jake, I pray you are with the Lord, ready to be resurrected (maybe even already resurrected since we don't know how any of this actually works) and free from the vulnerabilities you suffered here on this earth.
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