EhlersDanlos

What's everyone's experience with L-Lysine supplements? I found some references last night that I thought were interesting, they indicate L-Lysine and a vitamin C supplement could be helpful.

The main idea, to me, is to get collagen to build up. I've seen that one of us needs an excess of vitamin D in order to maintain basic healthy levels. Maybe we need to approach proline, glycine and lysine in the same way? What's been your experience with it?

First forum post, at inspire.com:

https://www.inspire.com/groups/eds-and-hsd/discussion/success-with-vitamin-c-and-lysine-supplements/

Similar results were found for in the comments by Dale on Nasar Nutrition:

https://nasarnutrition.com/ehlers-danlos-syndrome-supplements/

And this article sums up nicely where lysine fits in all of it:

Collagen is assembled in a triple helix design from the amino acids proline, glycine, lysine, and hydroxyproline. Amino acids are the building blocks of protein.

https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/supplements-part-2-collagen-supplements-and-edshsd/

Obviously, I'm unqualified to diagnose myself with EDS, but there's several signs I'm seeing after reading the article posted here, and family members bringing it up as a potential cause/link to another medical condition of mine.

At the end of this month I have a new patient intake appointment with a Primary Care Physician (US healthcare unfortunately.) I'd like to ask them to help me determine if I might have a form of EDS. I've known since I was a child that I have hypermobility, but never knew EDS was even a thing or that it could impact other areas of health and the body, and the more I read into it the more "symptoms" I find that I just thought were odd but part of my funky physiology (scarring, bruising, digestion, foot pain have stood out the most.)

As I'm reading more and more into the forms of EDS and its traditional testing methods, I can't help but wonder if this doctor (or most others) will be hesitant or refuse to test for it. I'm not looking to get much more than knowledge for myself concerning the way my body behaves; I certainly don't expect or want a doctor to diagnose me and start throwing treatments on it.

This leads me to my question(s): Has anyone here that's been diagnosed with a form of EDS felt they were largely dismissed by their doctors, regarding EDS or testing? Also, for those that have been diagnosed, do you feel the diagnosis was ultimately helpful or hurtful to you and/or your treatment during medical care?

TIA

I feel like I can't stop oversharing when people ask me about my injuries. I'm in a medical boot right now from injuring my foot during a 5 mile walk, and people get confused when I tell them this. And then I end up explaining I have a connective tissue disorder.

I dont want to lie. But I wish I didn't get so many follow up questions. 😭