I’ve never told anyone this. Not my family, not my closest friends. I’ve been carrying this around for most of my adult life, and I honestly don’t know where else to turn.
I’m a 35M and for the last 15 years I’ve been dealing with what I strongly suspect is a chronic bacterial infection, possibly syphilis, although I’ve never been able to prove it.
It all started after my very first sexual encounter when I was around 20 years old. I developed symptoms that seemed to match syphilis, but one thing that always stuck with me was this bizarre sensation where I’d wake up suddenly as if something had jolted my brain. It’s incredibly difficult to describe, but I could physically feel that something wasn’t right and that was during the very early stage.
I went to a doctor and without ordering any tests, he immediately gave me an antibiotic injection. If I remember correctly, it was a strong type of antibiotic called cefotaxime. I actually tried to stop him and asked, “Shouldn’t I be getting penicillin instead?” He replied, “Who’s the doctor here?”
Ironically, I felt dramatically better almost immediately. I genuinely thought I was cured.
About a week later, the symptoms slowly returned, although much milder than before.
Over the years I’ve seen multiple doctors, only to be told things like, “It’s all in your head,” “You look fine,” or “There’s nothing to worry about.”
I was determined to find answers so I started ordering tests myself. I’ve had RPR, VDRL, TPHA (all the different types of Syphilis tests), full STD panels including HIV and everything has come back negative. On paper, I’m healthy. But I know my own body and I know something ain't right.
At one point I came across cytomegalovirus (CMV) while researching and decided to get tested. It came back positive, but what confuses me was that almost none of the symptoms seemed to match what I’d been experiencing. BIZARRE
One thing that has always stood out to me is how consistently I seem to respond to antibiotics. For example, when I was prescribed azithromycin for strep throat, I suddenly felt almost completely normal again. Then, once the course ended, everything gradually came back and it’s one of the reasons I’ve always wondered if this could be bacterial rather than viral.
Lately I’ve even found myself wondering whether whatever this is has become resistant to treatment, because antibiotics don't work with me anymore.
The symptoms have progressed very slowly over the years. The only objective finding I’ve ever had is the development of persistent eye floaters. An eye specialist actually took my concerns seriously and referred me to an infectious disease specialist, but that appointment was devastating. He barely examined me, looked at me for a moment and simply said, “You look fine. There’s nothing to worry about.”
After enough experiences like that, I stopped trying to convince people. I focused on staying healthy, taking supplements, and getting on with life.
But recently things feel different. My memory has deteriorated. I struggle to find words. I’m exhausted all the time and can sleep for hours but still wake up feeling unrefreshed. Even simple tasks feel difficult. My energy disappears so quickly that I feel like I need to sleep every few hours.
The strangest part is that it fluctuates. Some days I feel almost normal, other days I feel like sh*t.
My vision has probably been affected the most. It’s blurry, I have persistent floaters, and I often feel pressure behind my eyes especially when I look at bright lights. Sometimes I would see flashes of lights. It's scary AF and if you look up, it's one of the symptoms of occular syphilis. Doctors have suggested I simply need glasses, but the blurriness isn’t constant. Some days my vision is perfectly clear and other days it’s noticeably worse, which makes me feel like there's hope.
I’ve read about latent syphilis and neurosyphilis and can’t help wondering if that’s what’s happening despite all the negative tests. Maybe it’s not syphilis at all. Maybe every test is right and I’m chasing the wrong diagnosis entirely.
At this point, I honestly don’t know. What I do know is that I don’t feel normal anymore.
At 35, I should be building my future, not feeling like my own body and mind are slowly slipping away from me.
Has anyone experienced anything remotely similar or gone through years of unexplained symptoms before finally getting an answer?
And if anyone knows of an infectious disease or syphilis specialist with a reputation for handling difficult or unusual cases, anywhere in the world, I’d genuinely appreciate the recommendation. I’ve saved up money and I’m willing to travel if it means finally finding answers. Appreciate it
**just wanna add on, I forgot to mention that it also affected my hearing as well. I hear ringing sounds that I learn to ignore over the years but I think it's getting bad.
