I hear you about NOT sitting around waiting for symptoms to improve!! I’m a doctor of physical therapy and the blasé attitudes with lack of searching outside the box for solutions by doctors is reprehensible. I’m personally sick of feeling shamed for their lack of understanding, interest, imagination, and knowledge of post viral conditions!

I had Covid back at end of 2019 in Europe. And have had a myriad of symptoms that keep popping up over the years. Sure, the shortness of breath got better finally after 2 years, but then 2 years later, I had severe allergic reactions (anaphylactic episodes for 9 months). Last year, was the worst of all with severe heart palpitations, weakness and shakiness and complete inability to do anything, showering takes all day to recover from.

And I totally agree that inflammation is a major issue with LC. My dermatologist recommended 50mg/day for anti inflammatory effects. (This is low enough dose that it isn’t antimicrobial).

However, there’s more to it than anti inflammatory. Like what’s the upstream cause of it? This is where I feel real treatment will occur.

I found through a random turn of events that paxlovid actually helped me long term (6 months), and then cipro along with paxlovid was even better… but then got off both and everything returned with a vengeance.

I’m finally seeing an infectious disease specialist who has been treating chronic illness for decades (which most practitioners have no experience with and oftentimes downplay that chronic illnesses even exist (most chalk these up to mental issues) think CFS, fibromyalgia, etc). My ID specializes in LC too.

She’s said most LC patients have some kind of underlying illness causing LC. Like chronic undiagnosed Lymes, Bartonella, or a reactivation of EBV, CMV, etc. I’m being tested now for all of them.

My hope is that there’s some kind of antimicrobial cocktail that will kill everything off and my life will return!

It seems possible since the antivirals along with antibiotic really helped me.

I just couldn’t stay on paxlovid any longer as it was causing GI distress and I got diverticulitis (which my doc says I’m too young to have). Being off of the Paxlovid has helped my GI. Just the rest of my symptoms are bad again 🙁

Most people who are recovering from Covid do take a while before things return to normal and then they’re fine. My dermatologist said she was bad for 4 months then has been back to normal since.

Then there are those like me who never fully recover after years. This is where finding the underlying causes are imperative for finding cures.

Medicine focuses mainly on symptom management that are downstream issues. I want the upstream cause addressed. And I hope to find it BEFORE it causes autoimmune disease! ( which a lot of chronic viral or bacterial infections cause - epigenetics of viral exposure turning on full autoimmune dysfunction which attacks the body, a.k.a. Autoimmune disease)

I believe the healthcare world is needing a BIG wake up call that chronic illnesses need to be addressed and treated early on. No more sticking their heads in the sand saying people “get over” things after someone has an illness (Covid, chickpox, mono, etc) or insect bite that goes away initially ignoring that it can come back later.

Finding the right practitioners who actually give a shhhh, you know the ending, is where real solutions will come. As well as someone who has knowledge and understanding of chronic diseases.

Sorry for my long rant! Lol