@puigpauadvocate @JeffLubell_C19 You should read the study by Tulane university on the correlation between folate deficiency and Ehlers-Danlos syndrome. Since it impact us, we need to take methylated folate daily.
@JeffLubell_C19 Your research makes complete sense, but I have no idea if anyone will be willing to help us. I’ve been disabled for five years, but I have not met an MD who seems to care at all. How do we get doctors to learn, let alone to care about us? 3/3
@JeffLubell_C19 Tulane had just published the research study verifying the correlation. In online LC groups, I could see how many people seem to have both LC & hEDS. Every MD I’ve seen either does not believe in LC, doesn’t know about hEDS, or has zero interest. 2/3
@btlsfan4 It is still active. It’s called the Washington University Post COVID-19 Clinic. You can make an appointment at 314–273–3300. I’m not sure what the criteria are to get into the program, they may have changed since I was accepted. https://t.co/rqbM9LbWud
@heyitsmorganmoe I am sorry you are in shock. I am sitting in my basement as I type this, due to tornado warning sirens. I can only imagine how this is adding to the stress of everyone who already suffered during the tornado 3 days ago. I sincerely hope you are safe.
@froglet80@LCinsomniac@healingfromlc Thank you. It’s definitely not our fault. I’m doing everything I can to get better, no matter what better looks like. I’ve been my own advocate fiercely, despite the incompetence & lack of concern by too many in the medical community. I’m grateful for this LC community of people.
@LCinsomniac@healingfromlc@froglet80 I appreciate being able to communicate with other people who understand our current reality. I’m sorry we are going through this.
@froglet80@LCinsomniac@healingfromlc Not one single doctor has shown any interest in treating me with antivirals. It’s confounding. I also read that getting the shingles vaccine can greatly diminish many of the neurological symptoms we have.