I'm new here!
Hi, my name is Debido1969. I'm here because after a 15 year (one-sided monogamous heterosexual) relationship filled w/emotional & mental cruelty, I became VERY sick & ended up hospitalized for over 2 weeks. I was eventually diagnosed w/HIV that caused multiple illnesses requiring hospitalization. That turned out to be the “good news” because subsequently, after being sexually inactive (now for 5 years), I was also diagnosed w/syphillis, which wasn’t caught upon my initial diagnosis- & due to the undiagnosed condition, I suffered a medication lapse for my HIV, which caused my body to do all sorts of crazy things, & being a new HIV patient, I accepted these symptoms as a “normal” result of unmediated HIV, & once returned to the proper medication, the symptoms gradually, but not entirely subsided… (still w/undiagnosed syphilis). I had to relocate to free myself from the damaging relationship, 2000 miles away to Huntsville, AL, where I was retested as protocol for finding ongoing HIV care. They gave me the surprising news about the undiagnosed syphilis, & I began researching how it was missed upon my previous testing, which led me to read about new research regarding the “highly under-diagnosed condition ‘Ocular Syphilis’. When I read the list of symptoms a huge lightbulb went on for me- it described ALL of my crazy symptoms experienced while unprotected by my HIV medication… I was happy to know that I could be treated for these ongoing issues until I spent the last 4 years being told that’s NOT what I have by all of the specialists (not HIV specialists, but symptomatic specialists, like Opthamologists, etc), & dismissed out-of-hand telling its old age, etc, without even looking at my medical history. I was treated successfully for the “regular” syphilis, but I cannot find any doctor that has the “power” to order tests to even look at my history & textbook symptoms. My HIV doctors believe in my condition but are powerless to order the tests or treatment to stop the progression of the complications of syphilis, which need a far higher dosage of antibiotics to cure. I know I fell through a weird crack, but I have a 13 year old child to support & my vision & range of motion are deteriorating (at a slower pace since my immune system is rebooted), but I am scared to death because I know I for all of the criteria for this complication of syphilis, but no one can or will help me get the treatment I need. I feel like I am crazy every time I try to explain my circumstances to another doctor. They may not be aware of the prevalence of this condition, as they don’t specialize in STI’s, but neither do I & the research make sense to me , especially because I am experiencing it firsthand. All I want is to provide for myself & my son & hopefully be around (& not blind or crazy), for as long as possible for him. He lost his dad to a life choice that does not include my son, or even supporting my son. WE NEED HELP. PLEASE.😢