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Would you get a lumber puncture to test for neurosyphilis (diagnosed with syphilis)
Hello,
I'm the proud new carrier of my very own syphilis bacteria.
About 3 months ago I had sex with a woman who was formerly a prostitute, she wasn't actively prostituting at the time. Oral, vaginal, and anal intercourse.
A month ago I got what I thought was a herpe sore in the middle of the shaft of my penis on the top. (I contracted genital herpes as a teenager years ago)
But it wasn't sore like most herpe sores I get occasionally, so I thought perhaps it was newly acquired hpv, I read up on treatments and burned it off with some ACV (apple cider vinegar) which worked very well aside from being slightly painful as it literally burns the skin when held on for awhile.
A couple days later I woke with a sore neck, 2 days after that I got a widespread maculopapular rash that looked like pityriasis rosea, accompanied by a severe headache on the left side of my head. I went to the doctor and told him of my symptoms but forgot to mention the sore I had burned off my penis, yet and still, due to my research I suggested the rash looked like either pityriasis rosea or possibly secondary syphilis even though I had serious doubts on the latter.
Due to being low-income I'm on a state funded lower-cost health plan, I only have access to student doctors and pa's through my insurance. Anyway, my student pcp said it looked like pityriasis rosea not syphilis so he didn't think I needed a blood test, he took pictures which he sent to a dermatologist. A week later I got news that the dermatologist diagnosed it as pityriases rosea via the pictures, and that I just had to wait it out for likely 3 months it would take to subside.
I waited 3 weeks, the headache was constant on the one side with stabbing ice pick exacerbations throughout the day, I relied heavily on tylenol and ibuprofen just to function or else the pain was completely debilitating. At 3 weeks I made an emergency appointment, at this point I explained the headache was severe, constant, and getting worse and said I wanted a blood test for inflammation and also secondary syphilis just to rule that out.
A few days later the blood test (RPR non-treponemal) came back positive (reactive) for syphilis. They then performed the FTA-ABS treponemal test which came back reactive as well, titers - 1:128 - I can't remember the titers on the non-treponemal test.
A specialist became involved, reviewed my case and diagnosed me with early symptomatic neurosyphilis based on symptoms and hi titer count, recommended IV treatment for neuro-syphilis 4 million units of penicillin administered parenterally every 4 hours for 10-14 days.
The only way I could get the treatment was to be admitted to a student teaching hospital, so I did that. From the outset I encountered what I felt was rather rude and/or incompetent medical care. They put the IV in, in a harsh-rushed manner, there was much blood underneath tape my armhair was being stretched and it felt more uncomfortable then IV's I've had in the past. I'm mentioned this and they said "it's fine", I did no further complaining despite the discomfort because I didn't want to start out on the wrong foot.
They admitted me and began the penicillin treatment with the IV, I began treatment at 4:30pm. I was supposed to be given my pain meds (ibuprofen or tylenol) every 6 hours, but they were late a couple hours late on the first dose and even later on the second, despite my asking multiple times, which meant I had to deal with severe headache pain for longer than normal when I was able to self-administer my pain meds.
The next day they sent multiple student doctors in to ask me the same questions over and over pertaining to everything including neurological symptoms. My neurological symptoms were as follows: -severe constant headache for a month straight which only got worst, -stiff and painful neck at times, -feeling of more eye-pressure on the same side as the headache along with light-flickering out of the corner of my eye, and occasional dizzyness (without vertigo).
They also asked me if I had any questions, for each doctor I had the same 2 questions: what type of penicillin were they giving me (aqueous procaine PNG or aqueous crystalline PNG) they all brushed it off with an answer such as "it's just the standard issue Penicillin G". I also asked what my latest blood work showed, despite every student doctor telling me they could answer any questions I had, neither of my questions were definitely answered.
They then asked me to get a lumbar puncture to verify neurosyphilis, which I declined because I was already receiving treatment for neurosyphilis which I agreed with, as I read that in 40% of all new cases of secondary syphilis there was CNS involvement. With my list of symptoms I thought it highly likely that there was some level of CNS involvement and thought it necessary to use the best PCN-G for CSF penetration, which was why I had hoped they were using Aqueous Crystalline PCN-G.
I also, at this point, did not fully trust the level of medical expertise at this student teaching hospital and did not want the spinal tap, although I did not tell them this.
They then did neurological tests and an eye-exam which I passed.
The overseeing doctor who oversaw the students came in at 2pm, she said based on their teams assessment I had secondary syphilis and she couldn't justify treating me for neurosyphilis to the insurance companies, and that she also believed that Benzathine PCN-G was the correct course of treatment, so they were going to reverse course, give me two shots of PCN-G Intramuscularly in each buttox and release me. I argued vehemently against this citing my above comments and the fact that the infection disease specialist that my pcp had conferred with recommended treatment for neurosyphilis. She would not budge, she said she "felt strongly" that the correct first step was to the recommended treatment for secondary syphilis.
I was treated and released shortly thereafter. It's been 2 days now. My rash has mostly resolved though not on the genitals where I may have a second chancre, my stiff neck has mostly resolved, and my headache is still constant but definitely less severe.
My question after all this explaining (thank you very much whoever reads and responds to this, in anyway, even if only to say you're not sure) My question is this:
IF THIS WERE YOU would you, at this point, get a Lumbar Puncture* to see if it's reactive for CNS involvement?
Or, would you wait a few weeks to a few months to see if the symptoms clear and the titers go back to normal, and in the case that they do, would you be confident that there was no neurological involvement?
*keeping in mind that you do not feel you are not receiving the highest level of medical care, and at times, it seems somewhat inexperienced/incompetent.
I'm the proud new carrier of my very own syphilis bacteria.
About 3 months ago I had sex with a woman who was formerly a prostitute, she wasn't actively prostituting at the time. Oral, vaginal, and anal intercourse.
A month ago I got what I thought was a herpe sore in the middle of the shaft of my penis on the top. (I contracted genital herpes as a teenager years ago)
But it wasn't sore like most herpe sores I get occasionally, so I thought perhaps it was newly acquired hpv, I read up on treatments and burned it off with some ACV (apple cider vinegar) which worked very well aside from being slightly painful as it literally burns the skin when held on for awhile.
A couple days later I woke with a sore neck, 2 days after that I got a widespread maculopapular rash that looked like pityriasis rosea, accompanied by a severe headache on the left side of my head. I went to the doctor and told him of my symptoms but forgot to mention the sore I had burned off my penis, yet and still, due to my research I suggested the rash looked like either pityriasis rosea or possibly secondary syphilis even though I had serious doubts on the latter.
Due to being low-income I'm on a state funded lower-cost health plan, I only have access to student doctors and pa's through my insurance. Anyway, my student pcp said it looked like pityriasis rosea not syphilis so he didn't think I needed a blood test, he took pictures which he sent to a dermatologist. A week later I got news that the dermatologist diagnosed it as pityriases rosea via the pictures, and that I just had to wait it out for likely 3 months it would take to subside.
I waited 3 weeks, the headache was constant on the one side with stabbing ice pick exacerbations throughout the day, I relied heavily on tylenol and ibuprofen just to function or else the pain was completely debilitating. At 3 weeks I made an emergency appointment, at this point I explained the headache was severe, constant, and getting worse and said I wanted a blood test for inflammation and also secondary syphilis just to rule that out.
A few days later the blood test (RPR non-treponemal) came back positive (reactive) for syphilis. They then performed the FTA-ABS treponemal test which came back reactive as well, titers - 1:128 - I can't remember the titers on the non-treponemal test.
A specialist became involved, reviewed my case and diagnosed me with early symptomatic neurosyphilis based on symptoms and hi titer count, recommended IV treatment for neuro-syphilis 4 million units of penicillin administered parenterally every 4 hours for 10-14 days.
The only way I could get the treatment was to be admitted to a student teaching hospital, so I did that. From the outset I encountered what I felt was rather rude and/or incompetent medical care. They put the IV in, in a harsh-rushed manner, there was much blood underneath tape my armhair was being stretched and it felt more uncomfortable then IV's I've had in the past. I'm mentioned this and they said "it's fine", I did no further complaining despite the discomfort because I didn't want to start out on the wrong foot.
They admitted me and began the penicillin treatment with the IV, I began treatment at 4:30pm. I was supposed to be given my pain meds (ibuprofen or tylenol) every 6 hours, but they were late a couple hours late on the first dose and even later on the second, despite my asking multiple times, which meant I had to deal with severe headache pain for longer than normal when I was able to self-administer my pain meds.
The next day they sent multiple student doctors in to ask me the same questions over and over pertaining to everything including neurological symptoms. My neurological symptoms were as follows: -severe constant headache for a month straight which only got worst, -stiff and painful neck at times, -feeling of more eye-pressure on the same side as the headache along with light-flickering out of the corner of my eye, and occasional dizzyness (without vertigo).
They also asked me if I had any questions, for each doctor I had the same 2 questions: what type of penicillin were they giving me (aqueous procaine PNG or aqueous crystalline PNG) they all brushed it off with an answer such as "it's just the standard issue Penicillin G". I also asked what my latest blood work showed, despite every student doctor telling me they could answer any questions I had, neither of my questions were definitely answered.
They then asked me to get a lumbar puncture to verify neurosyphilis, which I declined because I was already receiving treatment for neurosyphilis which I agreed with, as I read that in 40% of all new cases of secondary syphilis there was CNS involvement. With my list of symptoms I thought it highly likely that there was some level of CNS involvement and thought it necessary to use the best PCN-G for CSF penetration, which was why I had hoped they were using Aqueous Crystalline PCN-G.
I also, at this point, did not fully trust the level of medical expertise at this student teaching hospital and did not want the spinal tap, although I did not tell them this.
They then did neurological tests and an eye-exam which I passed.
The overseeing doctor who oversaw the students came in at 2pm, she said based on their teams assessment I had secondary syphilis and she couldn't justify treating me for neurosyphilis to the insurance companies, and that she also believed that Benzathine PCN-G was the correct course of treatment, so they were going to reverse course, give me two shots of PCN-G Intramuscularly in each buttox and release me. I argued vehemently against this citing my above comments and the fact that the infection disease specialist that my pcp had conferred with recommended treatment for neurosyphilis. She would not budge, she said she "felt strongly" that the correct first step was to the recommended treatment for secondary syphilis.
I was treated and released shortly thereafter. It's been 2 days now. My rash has mostly resolved though not on the genitals where I may have a second chancre, my stiff neck has mostly resolved, and my headache is still constant but definitely less severe.
My question after all this explaining (thank you very much whoever reads and responds to this, in anyway, even if only to say you're not sure) My question is this:
IF THIS WERE YOU would you, at this point, get a Lumbar Puncture* to see if it's reactive for CNS involvement?
Or, would you wait a few weeks to a few months to see if the symptoms clear and the titers go back to normal, and in the case that they do, would you be confident that there was no neurological involvement?
*keeping in mind that you do not feel you are not receiving the highest level of medical care, and at times, it seems somewhat inexperienced/incompetent.
I did notify the girl I caught it from, I haven't had sex after that, and I hadn't had sex in years prior to that. I did use a condom that broke during anal intercourse, which I realized at the time but did not stop, it was very dumb on my part but I wasn't really in full control of my sensibilities at that moment.
Sorry there are a few typos, *definitively not definitely, and the last sentence should read: "keeping in mind that you do not feel you are receiving the highest level of medical care." I put an extra not in there sorry. I also forgot to mention that although the rash was wide spread it was most prevalent on my trunk and arms with less spots on legs, I only had a couple vague red spots on my palms and soles so that may have mad the diagnoses harder. A couple rash spots going up my neck towards my left-ear to where the headache starts.
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
