3 ms·

thanks for the tips! I think long covid has more similarities to POTS than to hEDS, but most of us have POTS or OI too, so I agree it will help. on the subject

thanks for the tips! I think long covid has more similarities to POTS than to hEDS, but most of us have POTS or OI too, so I agree it will help. on the subject of sketchy gray-market meds, have you heard of BPC-157? I know an hEDSer who seemed to really bounce back after using it, but I can't quite work up the nerve to inject myself with internet peptides. What do you read to stay informed about this stuff?

abz10 5y ago
Yup; I’m starting out with BPC-157 and TB-4 in an oral form, before adding hGH injections later so I can tell which does what. Maybe a supplemental amount of testosterone after that. The hGH will help tethered cord syndrome which I don’t have but you might. It is a potential very painful temporary complication you might want to be mindful of. Anecdotally it is a better fix for that than surgery which hEDS people have a hard time healing from. Even if someone seeks a hEDS diagnosis they are given a false negative 85% of the time. The vast majority don’t know to even seek it. It’s surprisingly prevalent, but also a spectrum. Many will present as just anxiety and burnout. I read preprint research on ResearchGate and the NIH website - including mouse studies, as well as research done in Eastern Europe. I chat to friends who work in computational biology and longevity. I read a ton of comments across Facebook, Reddit, YouTube, and Twitter looking for anecdotal data. Bodybuilders and athletes are another good source of anecdotal information. I used to be an applied researcher in machine learning; so I’m used to finding mistakes in others work. There is a lot of false confidence in medicine due to p-hacking and selection biases. I worked with behavioral data so I’m also used to cleaning anecdotal data and making it useful. I got lucky; I was told young that weightlifting will help straighten my back and keep my shoulders from subluxating so I’ve worked out most of my life. Also why I knew more PT wasn’t going to help. At my high school gifted program I was warned that people at my level pretty much always burn out young; so I’ve always kept that in mind and readily slow down when burning out. It has been hell but it could easily have been worse. I think the weightlifting helps a ton with the testosterone and hGH and maybe other hormones. So does sunlight, it’s more than just vitamin D. But I can’t maintain the intensity and invariably get injured and relapse. This has been a cycle for me for many years. There is also the mitochondrial repair approaches which I’ve yet to experiment with. I think it could easily be 5-10-15 years for a proper cure. It’s a very neglected field.

abz10 5y ago

Yup; I’m starting out with BPC-157 and TB-4 in an oral form, before adding hGH injections later so I can tell which does what. Maybe a supplemental amount of testosterone after that. The hGH will help tethered cord syndrome which I don’t have but you might. It is a potential very painful temporary complication you might want to be mindful of. Anecdotally it is a better fix for that than surgery which hEDS people have a hard time healing from. Even if someone seeks a hEDS diagnosis they are given a false negative 85% of the time. The vast majority don’t know to even seek it. It’s surprisingly prevalent, but also a spectrum. Many will present as just anxiety and burnout. I read preprint research on ResearchGate and the NIH website - including mouse studies, as well as research done in Eastern Europe. I chat to friends who work in computational biology and longevity. I read a ton of comments across Facebook, Reddit, YouTube, and Twitter looking for anecdotal data. Bodybuilders and athletes are another good source of anecdotal information. I used to be an applied researcher in machine learning; so I’m used to finding mistakes in others work. There is a lot of false confidence in medicine due to p-hacking and selection biases. I worked with behavioral data so I’m also used to cleaning anecdotal data and making it useful. I got lucky; I was told young that weightlifting will help straighten my back and keep my shoulders from subluxating so I’ve worked out most of my life. Also why I knew more PT wasn’t going to help. At my high school gifted program I was warned that people at my level pretty much always burn out young; so I’ve always kept that in mind and readily slow down when burning out. It has been hell but it could easily have been worse. I think the weightlifting helps a ton with the testosterone and hGH and maybe other hormones. So does sunlight, it’s more than just vitamin D. But I can’t maintain the intensity and invariably get injured and relapse. This has been a cycle for me for many years. There is also the mitochondrial repair approaches which I’ve yet to experiment with. I think it could easily be 5-10-15 years for a proper cure. It’s a very neglected field.