hyperichard -
Welcome! Your symptoms sound awful & the fact you have both Lyme Disease & EDS doesn’t bode well for your joints. EDS causes ligament laxity which means your joints aren’t held in place as tightly as for someone who doesn’t have it. It’s good that you aren’t striving to be an Olympic athlete as EDS might put a quick end to that.
I have a good friend & a niece who both are dealing with Lyme Disease. My friend’s is in complete remission & my niece goes on & off antibiotics about every 6 months. I will talk to my friend to see what helped her with her Lyme Disease & perhaps can give you some good information going forward.
The symptoms you listed have all been noted w/ ES except perhaps the overall joint cracking. If there are cracking joints, it’s usually jaw, neck shoulder & sometimes there’s cracking/crunching sounds when swallowing if the stylohyoid ligaments are very calcified. As you noted, the lower extremity issues are more likely due to your EDS or Lyme diagnoses. I know Babesiosis is tick born, but Bartonella may come from another source. In case you didn’t know, it’s also called “Cat Scratch Fever” because it can be transmitted through a scratch from a cat.
Dr. Hepworth is the best doctor you can be seeing for ES if you have vascular symptoms. We have a number of members who have benefitted from his care.
Your poor body is fighting many challenges right now. I hope getting the ES taken care of will allow you to fight more effectively against the other problems so you can feel better.
Here are a couple of posts that Jules wrote that will be helpful for you: