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?