Ehlers-Danlos Syndrome and Peptides

[bibson]

After some significant flaring of dysautonomia (very likely POTS,) lifelong hypermobile weirdness and injuries, and a laundry list of symptomology, I'm in the process of getting diagnosed with Ehlers-Danlos Syndrome. My body feels like it's falling apart a bit and I'd like to slow the dominoes falling as much as I can.

I was wondering if anyone here has EDS/a connective tissue disorder, and if any peptides have helped in treatment or preventative care. I'd immediately think GLOW/KLOW and other peptides that help the uptake of collagen might have some effect, but EDS has so many negative quality of life effects that I imagine there may be other peptides that help as well.

Anyone have experiences or thoughts to share? Thanks!

 

[data259]

I'm very interested in this topic too. My sister has some sort of auto-immune condition going on with elevated ANA numbers, and it also seems to have to do with connective tissues, but I don't think she has actually received the EDS diagnosis. They're still trying to pin it down. But I was telling her about KPV and KLOW and what I have been reading about them. She is interested but we'd like to know if someone else has had any experience using them.

 

[bibson]

I'm very interested in this topic too. My sister has some sort of auto-immune condition going on with elevated ANA numbers, and it also seems to have to do with connective tissues, but I don't think she has actually received the EDS diagnosis. They're still trying to pin it down. But I was telling her about KPV and KLOW and what I have been reading about them. She is interested but we'd like to know if someone else has had any experience using them.

I'm doing genetic testing to confirm diagnosis myself - depending on the variant, it's a real pain to get the DX, good luck to her.

I actually did run a brief KLOW cycle for 2-3ish weeks but stopped due to an emergency move that messed up all my peptide routines (and the stress of which caused the flare!). In the time I used it I found that most of the stretch marks that cover quite a bit of my body (another fun EDS trait!) faded significantly, and that was without additional collagen uptake. About to get settled into my new place and I have a ton of gelatin + collagen supplements that I'm gonna be using on top of KLOW to maximize my body's ability to actually use collagen. I think I'll keep a log of the effects and take pictures of current scarring/note of current EDS issues before I hop back on. Might as well pass on what I learn if I'm gonna be a lab rat!

 

[conzopiriani]

Exceedingly interested and will be following your journey.

 

[Higgybaby]

After some significant flaring of dysautonomia (very likely POTS,) lifelong hypermobile weirdness and injuries, and a laundry list of symptomology, I'm in the process of getting diagnosed with Ehlers-Danlos Syndrome. My body feels like it's falling apart a bit and I'd like to slow the dominoes falling as much as I can.

I was wondering if anyone here has EDS/a connective tissue disorder, and if any peptides have helped in treatment or preventative care. I'd immediately think GLOW/KLOW and other peptides that help the uptake of collagen might have some effect, but EDS has so many negative quality of life effects that I imagine there may be other peptides that help as well.

Anyone have experiences or thoughts to share? Thanks!

I have a laundry list as well. Dx'd with hyper pots, and hypermobility.My rheumatologist blew me off when I asked for testing for eds. I'll likely pursue this on my own at some point. I'm also HLA B27 positive, and suffer from a lot of inflammatory pain.
Still researching over here, not finding all the answers quite yet, but starting to feel better in a lot of areas.

 

[bibson]

I have a laundry list as well. Dx'd with hyper pots, and hypermobility.My rheumatologist blew me off when I asked for testing for eds. I'll likely pursue this on my own at some point. I'm also HLA B27 positive, and suffer from a lot of inflammatory pain.
Still researching over here, not finding all the answers quite yet, but starting to feel better in a lot of areas.

I am going directly to a labcorp clinic just so I don't have to deal with convincing a doctor to care about me; unfortunately EDS is poorly understood in the medical field; I was talking to a relative who has been a doctor for 30+ years and he thought it wasn't possible for me to have EDS due to not having a Marfan-like body type (i am quite stocky, basically opposite), except that only appears in 1 of the 13 types! He had no idea.

I hope you find your answers, glad to have some camaraderie in shared question marks. Interested to hear if youre exploring any immune-modulating/anti-inflammatory peptides for the HLA B27.

 

[Higgybaby]

I am going directly to a labcorp clinic just so I don't have to deal with convincing a doctor to care about me; unfortunately EDS is poorly understood in the medical field; I was talking to a relative who has been a doctor for 30+ years and he thought it wasn't possible for me to have EDS due to not having a Marfan-like body type (i am quite stocky, basically opposite), except that only appears in 1 of the 13 types! He had no idea.

I hope you find your answers, glad to have some camaraderie in shared question marks. Interested to hear if youre exploring any immune-modulating/anti-inflammatory peptides for the HLA B27.

I agree, we have a lot we can learn from one another. I absolutely think it's better to know the root cause and treat it vs slapping a bandaid over the problem. And good for you taking your healthcare seriously. I'm in the healthcare field, and try not to over generalize. There's a lot of people out there trying to help and they do care. Also, there's lots of reasons why healthcare providers don't pursue further testing. An NP once told me she would like to run some more labs, but she'd be reprimanded if she did. IMO the actual diagnosis (insert any condition here)would help, especially when there are subtypes. Also, physical therapy and strengthening to support hyper mobile joints seems to be a logical treatment with these diagnosis. Not just immunosuppressants and meds that wreck your kidneys. But most of us pay an outrageous amount for healthcare insurance, it would be nice to have it actually pay for something lol.
My friend has marfan like features and was tested right away, I know what you're saying here. There's a lot of ignorance about EDS, and a little knowledge can be your best friend🙂