I almost cried reading the last paragraph :') Thrilled for you for that.
Feeling especially down and disabled lately because I think I'm trying everything and working so hard and I'm not getting better. People out here talking candidly about it all really help though.
Are you trying any treatment for the FH? Did you have whole exome sequencing or some other genetic testing?
E-bikes are great! In 2020, I converted my old $200 department store bike into an e-bike, at an expense far greater than what I paid for the bike itself, but it made it a joy to ride! It allowed me to keep up with my husband and go much farther on our local bike paths, which involve hills. Definitely worth.
Working SO well. Just tried it out in the dark and cold for the first time. I’d been thinking it wouldn't be very useful until spring, but... it was great! Properly dressed, it’s just FINE, and a huge improvement over driving for some of my regular trips. So that just dramatically improved the value I’m getting, and I was already very happy with it. 🙂
Hi, Stephen. Okay, I’ve scanned that. Is the main actionable gist of that... eat more eggs? Obviously there's a bunch more information there, but on my first pass it sure looked like "more eggs" was the bottom line. If I’ve oversimplified that too much or missed something critical, let me know and I'll return and read more carefully.
I'm happy to "consider my microbiome," and I have no doubt that the microbiome is relevant to, well, practically every goddamn thing, and I’m open to experimenting if it’s safe/cheap. But I also have many doubts about our ability to understand it, and manipulate it therapeutically.
The big mistake is assuming you need to understand it in order to manipulate it therapeutically.
You're right that it's almost unbearably complex.
It's like you're looking at a control panel with 100 unlabeled switches. Only some configurations of that switchboard lead to a happy, healthy Paul. Even if there are a million different "good" configurations—a million ways to be right—there are a literal billion trillion ways to be wrong...and you get little or no feedback, when you flip one switch, about whether or not it's brought you closer to a "good" configuration.
It's hopeless! Unless you cheat.
Because everyone else has one of these control panels. So really, all you have to do is find someone—anyone—who's got their switches in a good configuration, and is willing to let you copy their pattern down.
Do you see what I'm getting at here, man? I am not telling you to eat eggs. I am telling you—truly, heartfelt, seriously—to eat shit.
Based on everything I've read of yours—from the awful poops that accompanied the start of all this to this most recent cholesterol thing—it seems very reasonable to suspect that your problems originate in the microbiome.
This is good news, because the microbiome is responsible for so much of human biological variation, and humans are all genetically similar enough to one another, that—if a person is happy and healthy—then clearing out your gut bacteria and replacing it with theirs stands a solid chance of turning you into a happy, healthy person as well (or at least making a substantial improvement over your current condition).
It's worked in Parkinson's, it's worked in autism, it's worked in multiple sclerosis. It would probably work for you.
But why am I trying to convince you? You've already said you're willing to experiment!
On the subject of safety: tens of thousands of fecal transplants have been performed in the US alone over the last two decades. There has been exactly one death, in a 73-year-old person who caught a new kind of opportunistic pathogen that they weren't yet screening for, and who was unable to fight it off because—while his donor's immune system kept the thing in check just fine—the recipient was also undergoing a bone marrow transplant for a rare cancer at the same time, and thus had literally no immune system.
More commonly, sometimes there are transient GI side effects like gas.
For what it is, it's unbelievably safe.
As for cost: the testing to make sure your donor has no fluid-transmissible diseases like hep C or HIV might run you a couple hundred bucks. You can probably skip this if your donor is e.g. a wife or someone else you're regularly having unprotected sex with.
Other than that, you'll need:
one very healthy (and *very* understanding) friend or family member (see above)
a pastry bag, with fine icing tip
a box of gloves
some size 0 and size 00 capsules
and various household staples like foil and duct tape.
I almost cried reading the last paragraph :') Thrilled for you for that.
Feeling especially down and disabled lately because I think I'm trying everything and working so hard and I'm not getting better. People out here talking candidly about it all really help though.
Are you trying any treatment for the FH? Did you have whole exome sequencing or some other genetic testing?
E-bikes are great! In 2020, I converted my old $200 department store bike into an e-bike, at an expense far greater than what I paid for the bike itself, but it made it a joy to ride! It allowed me to keep up with my husband and go much farther on our local bike paths, which involve hills. Definitely worth.
Glad to hear it's working well for you!
Working SO well. Just tried it out in the dark and cold for the first time. I’d been thinking it wouldn't be very useful until spring, but... it was great! Properly dressed, it’s just FINE, and a huge improvement over driving for some of my regular trips. So that just dramatically improved the value I’m getting, and I was already very happy with it. 🙂
https://stephenskolnick.substack.com/p/cholesterol
[Bernie Sanders in a coat meme]
I am once again asking for you to consider your microbiome.
Hi, Stephen. Okay, I’ve scanned that. Is the main actionable gist of that... eat more eggs? Obviously there's a bunch more information there, but on my first pass it sure looked like "more eggs" was the bottom line. If I’ve oversimplified that too much or missed something critical, let me know and I'll return and read more carefully.
I'm happy to "consider my microbiome," and I have no doubt that the microbiome is relevant to, well, practically every goddamn thing, and I’m open to experimenting if it’s safe/cheap. But I also have many doubts about our ability to understand it, and manipulate it therapeutically.
The big mistake is assuming you need to understand it in order to manipulate it therapeutically.
You're right that it's almost unbearably complex.
It's like you're looking at a control panel with 100 unlabeled switches. Only some configurations of that switchboard lead to a happy, healthy Paul. Even if there are a million different "good" configurations—a million ways to be right—there are a literal billion trillion ways to be wrong...and you get little or no feedback, when you flip one switch, about whether or not it's brought you closer to a "good" configuration.
It's hopeless! Unless you cheat.
Because everyone else has one of these control panels. So really, all you have to do is find someone—anyone—who's got their switches in a good configuration, and is willing to let you copy their pattern down.
Do you see what I'm getting at here, man? I am not telling you to eat eggs. I am telling you—truly, heartfelt, seriously—to eat shit.
Based on everything I've read of yours—from the awful poops that accompanied the start of all this to this most recent cholesterol thing—it seems very reasonable to suspect that your problems originate in the microbiome.
This is good news, because the microbiome is responsible for so much of human biological variation, and humans are all genetically similar enough to one another, that—if a person is happy and healthy—then clearing out your gut bacteria and replacing it with theirs stands a solid chance of turning you into a happy, healthy person as well (or at least making a substantial improvement over your current condition).
It's worked in Parkinson's, it's worked in autism, it's worked in multiple sclerosis. It would probably work for you.
But why am I trying to convince you? You've already said you're willing to experiment!
On the subject of safety: tens of thousands of fecal transplants have been performed in the US alone over the last two decades. There has been exactly one death, in a 73-year-old person who caught a new kind of opportunistic pathogen that they weren't yet screening for, and who was unable to fight it off because—while his donor's immune system kept the thing in check just fine—the recipient was also undergoing a bone marrow transplant for a rare cancer at the same time, and thus had literally no immune system.
More commonly, sometimes there are transient GI side effects like gas.
For what it is, it's unbelievably safe.
As for cost: the testing to make sure your donor has no fluid-transmissible diseases like hep C or HIV might run you a couple hundred bucks. You can probably skip this if your donor is e.g. a wife or someone else you're regularly having unprotected sex with.
Other than that, you'll need:
one very healthy (and *very* understanding) friend or family member (see above)
a pastry bag, with fine icing tip
a box of gloves
some size 0 and size 00 capsules
and various household staples like foil and duct tape.
All in all, probably under $100.
I'll send you the protocol.