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🙂

 

[YoYoFat]

I have EDS but all the peptides I’ve been interested in increase HGF and I’m scared of that.

 

[bibson]

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🙂

Most certainly there are a lot of providers who care, I'd argue is a very solid majority. It's unfortunately not feasible to be informed on everything that could be up with the human body, too many weird things that go on. The only issues that feel like "not caring" come to a head with human nature/logical fallicies when providers are like "I've never seen x before, so it cant be x," or things like that. I've been to a neurologist whose conclusion was "the brain is just weird sometimes! Nothing we can do, there's no reason to test you for anything" and the second opinion offered a ton of options - stuff like that is where it can be really frustrating. I had a really great PCP who was willing to look into options for subjects he wasn't familiar with but unfortunately my insurance dropped the entire healthcare network my care team is affiliated with 🙁 quite a lot of shopping around to be done.

I've been bodybuilding throughout the years, and unfortunately my boulder shoulders haven't kept them from going wonky out of the sockets - I think PT and learning how to actually physiological address the issue would be excellent. I'm pretty uninformed regarding joint strengthening. Just had a conversation with a geneticist yesterday and will be getting a panel of connective tissue disorder genes tested, including EDS, plus some genes for familial neuropathy. It's a pain hEDS is the only one that can't get tested for genetically; if the gene testing is inconclusive then I think that my dislocation party tricks + aceing Beighton scale should get me some help pretty quick.

I have EDS but all the peptides I’ve been interested in increase HGF and I’m scared of that.

Growth factor boosting peptides also freak me out a bit, but due to a recent ER trip I got checked every which way for cancers and came up clear, so I feel like I have a bit of a window where my risk levels are quite low. I am on CJC+IPA along w KLOW that also has GF/angiogenic boosting properties. Is the cancer aspect the part that is causing concern, and also which peptides out of curiousity?

 

[bibson]

Started back up on my peps this week; taking KLOW, Reta, CJC+IPA, MOTS-C, L-Carn, along with Oxytocin Acetate/DSIP for sleep.

Been having really, really bad extensor tendonitis along with my typical upper back pain (my shoulders are almost always subluxed, and put a ton of stress on my upper back). Hoping the KLOW helps in resolving inflammation.

Getting back into working out as well.

 

[Foggy-Hollow]

Hi Friends. I am in a murky area (a foggy hollow?) where my family has a "Marfan-like" genetic variant. It's a molecule swap on the same gene but only 9 people are like us in the US database, so it's a big question mark. It's not EDS but we're cousins.

Health care providers have been an interesting bunch. We've been told that since we're in a gray area, the plan is to keep an eye on the aneurysms and treat symptoms as they come. I've come to terms with that - what else could I expect with a basically unknown condition? A few weeks ago, I got a mildly-pressured pitch to get ALL of us genetically tested (only one of 4 has) which: we have insurance but to what end? If the researchers want to pay for it, I'll donate. But selfishly, why pay for something that isn't going to help to diagnose or treat my family?

Don't get me wrong: I took an extra poke during a thyroid biopsy, for a study in Cali to improve the quality of thyroid tests. Half my thyroid followed a few weeks later. (Enjoy Cali, friends!)

I feel like I'm being short-sighted. But am I ?

I've been bodybuilding throughout the years, and unfortunately my boulder shoulders haven't kept them from going wonky out of the sockets - I think PT and learning how to actually physiological address the issue would be excellent.

I'll be interested in what you learn. I've lifted off and on over the years (heavy, fewer reps, a tad unusual for females) and I think it's helped a lot. Unfortunately I'm not EDS but I do feel like it's "held me together" in a sense. As I'm aging - pretty much menopausal - I can feel the laxity increasing. I'm starting to panic in a slow way... I'm getting new tendonitis-es. Maybe they'll have something to help you engage those boulder shoulders more to prevent the slippage?

My 80-yo dad - one of the 4 above - grew a bone spur around the cup of his shoulder. He had a physical job, and the dislocations caused the reaction in his joint. He's had shoulder replacements so it's no longer there. But I just 2+2 together now on why it happened. We thought it was due to his job at the time.

PTs are underrated in my opinion - they have SO many tools at their disposal, good ones are worth their weight in gold.

I have EDS but all the peptides I’ve been interested in increase HGF and I’m scared of that.

Can anyone enlighten me on why HGF is undesirable? Is it due to the the extra bone growth that already tends to happen?

 

[bibson]

Health care providers have been an interesting bunch. We've been told that since we're in a gray area, the plan is to keep an eye on the aneurysms and treat symptoms as they come. I've come to terms with that - what else could I expect with a basically unknown condition? A few weeks ago, I got a mildly-pressured pitch to get ALL of us genetically tested (only one of 4 has) which: we have insurance but to what end? If the researchers want to pay for it, I'll donate. But selfishly, why pay for something that isn't going to help to diagnose or treat my family?

I don't think it's selfish to want to be compensated for something that will take up your time - at the very least, there should be funds within whatever grant the researchers are working with to provision and cover those tests. You should also be informed of what is actually done with that information - no good IRB is going to let a study without rationale pass, and being informed is your right (of course double blind, placebo studies etc have certain caveats for being told what information is being studied, but this is quite straightforward.) Unfortunate that you condition is an anomaly - it is never, ever a good sign to be found interesting by geneticists (I did very recently a "fascinating!" from a geneticist I was consulting with, NOT a good sign.)

'll be interested in what you learn. I've lifted off and on over the years (heavy, fewer reps, a tad unusual for females) and I think it's helped a lot. Unfortunately I'm not EDS but I do feel like it's "held me together" in a sense. As I'm aging - pretty much menopausal - I can feel the laxity increasing. I'm starting to panic in a slow way... I'm getting new tendonitis-es. Maybe they'll have something to help you engage those boulder shoulders more to prevent the slippage?

My 80-yo dad - one of the 4 above - grew a bone spur around the cup of his shoulder. He had a physical job, and the dislocations caused the reaction in his joint. He's had shoulder replacements so it's no longer there. But I just 2+2 together now on why it happened. We thought it was due to his job at the time.

PTs are underrated in my opinion - they have SO many tools at their disposal, good ones are worth their weight in gold.

I'll absolutely relay whatever I learn - for the longest time I didn't even realize hypermobility was compatible with being musclebound (my muscles are so ridiculously tight that a podiatrist literally gasped when he was testing my calf mobility lol). But they're actually quite related - my muscles are constantly tightening to keep things from going wiggly on me, so I wonder if there's a way for them to support my joints without causing that extreme stiffness. Very excited to experience what PTs have to offer!

Can anyone enlighten me on why HGF is undesirable? Is it due to the the extra bone growth that already tends to happen?

Any growth factor that has an effect that ends in -genesis has some risk factors regarding cancers - angiogenic compounds, for example, boost the formation of new blood vessels. The downfall of this is that cancer LOVES being able to proliferate tumorous blood vessels with angiogenetic help. From the brief googling I have done on HGF, it can give a helping hand to quite a few cancers, which unfortunately is the same deal for a lot of tissue healing/generating peps.

 

[bibson]

Update on Peptides and Health - 10/22/25

So, I figured I should check in here whenever something interesting happens regarding my health, both because I love talking about myself and because it's good for documentation.

I have finally settled in to a new space after a very stressful move which had kicked off a lot of different health difficulties. Stress levels are significantly better now.

I have gotten back on the following peptides:

• Retatrutide (2mg/week)
• KLOW complex (3mg, daily)
• CJC + Ipamorelin (200mcg morning + night, daily)
• L-Carnitine (1000mg before workouts, daily)
• MOTS-C (5mg, 3x/week)

I also take oxytocin, semax and selank but this thread is focusing more on the physical than the mental.

Getting back on KLOW immediately had notable effects on the cigarette-paper scarring that decorates my back, stomach, and shoulders/pecs. For a few days, the stretch marks were this inflamed-ish looking red, with no pain or anything, but then quickly turned back to my usual skin tone and began fading even more than they already had. Unfortunately gaining more scar tissue than I'm losing because I have gotten back into working out and therefore my muscle volume is getting back to where it was, and my skin is extremely unhappy about it and is making it known.

Recovery times from intense workouts have been really good - feel like I can push myself without being totally spent. I feel like not working out will be an absolute disaster for me and I'm definitely regretting not having kept up my workouts over the last several (4+) months. Can only move forward, though.

I have noticed significantly less dizzy spells now that I am back into working out and hydrating much more - for me, reta also decreases my cue to drink water (also, ADHD) so I have been very intentional about hydration.

The most immensely not fun thing in the past week or so: gout! Henry the 8th style, I suddenly got a bout of gout in my right foot - pretty damn unpleasant. Unsure if it is chronic or acute, but considering the list of things chronically up with me, I am not super confident that this will be a one and done event. Got put on prednisone which is helping a lot. The list of things newly going wrong with my body is definitely making my eyebrow raise on if I have an autoimmune condition that has recently decided to make an appearance. Rheumatologist is gonna have their work cut out for them.

Recently did a comprehensive metabolic panel and everything is looking good. I also use a monthly blood testing service called Rhythm to keep an eye on hormones and such and my T is pretty low - not shocking considering the enormous stress and not working out. Adding ashwagandha, DHEA, tongkat ali, and tribulus to my stack - the DHEA is the only thing that 1000% will increase T levels, but the other stuff has at least a bit of promising research behind it.

Meeting with my new doc soon, I am sure I'll fascinate him. Exciting updates to come!