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otosyphilis diagnosis and treatment

Going to see a doc soon, but I was wondering if I could get any additional info here... Is anyone familiar with otosyphilis and/or neurosyphilis?  Scared to death here.  

I got syphilis via a low-risk encounter in March.  I had a rash and a mouth ulcer (never saw the chancre), so I had a panel of STD tests done in early June (12 weeks).  Tested positive (1:32 and positive FTA) for syphilis.  Negative for others, including IgG for HIV1/2 (I've also tested myself several times via OraQuick for HIV1/2... always negative).  

I went to the STD clinic right away and got treated aggressively... three weeks of 2.4M Bicillin (penicillin).  Last treatment on June 26th (two weeks ago).

Rash & ulcer cleared up quickly.  The problem I have is that my ears are bugging me.  Sort of a "heavy" feeling and a tinnitus if the background is silent.  Also, the lymph node behind one of my ears was swollen during the secondary syphilis... it has gotten noticeably smaller, but it has certainly not gone away completely.  I'm would think that I do not have any hearing loss, but it hasn't been tested so I can't be sure that there's zero hearing loss.  I don't think I notice any other signs of neurosyphilis, but I've always had floaters in my eyes, so who knows if there's more of them or not.

1) Could these ear symptoms just be remnants of the syphilis and might go away?  
2) If this is oto/neurosyphilis, what are the chances that I have to be hospitalized?  I do NOT want to spend two weeks in the hospital, stewing in my shame.  My uneducated philosophy is that this is very early in the disease, so perhaps an outpatient treatment would work.  Again, I think that I've overtested for HIV, so I'm certain that I'm HIV negative.  Any chance of that argument flying?  I also don't want to go insane in 10 years from this crap.  

Thanks a lot.  
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Avatar universal
I realize this is an old thread but I wanted to add to it since my case is quite similar. It may help someone else out down the road.

I am in a virtually identical situation. Acquired syphilis oral cancre right side lip (wish I didn't discard it as an ingrown hair now...), second stage rash noted later, tested positive syphilis (1:64 titer), treated with 2 penicillin shots due to no neurological symtoms at the time, multiple negative HIV tests (initial 3rd Gen negative, 4th gen @ 6 weeks post risk, pending 4th gen @ 12 weeks any day now and praying every minute).

Its been 9 weeks since my penicillin shot. My occipital lymph node (back neck  behind ear) is still enlarged/hardened, as are others in the lower right neck, right elbow, etc.

At roughly 6 weeks post treatment my right ear sort of 'muted' (think of elevation change when your ears get quiet/pop) then I experienced the light ringing sensation, following shortly after the left ear. Over the course of several days I had experienced, multiple temporary (5 seconds or so) hearing loss fluctuations between my ears. Had a brain MRI and lumbar puncture scheduled.

MRI, including multiple high-resolution scans of my inner audio canals which were deemed within "norms" (I hate this medical diagnostic language, relativity is significant to the patients' circumstances/symptoms, not the population).

Had the lumbar puncture done (I advise lots and lots of back rest, 3-4 days at least). CSF was deemed normal: crystal clear, RBC 0, WBC 0, Protein 14 mg/dl, glucose 59 mg/dl, opening pressure 17 cm H2O. Still pending test results on CSF-VDRL and CSF-FTA-ABS tests after 1 week. Apparently, confusion occured at the lab and they may not have done the syphilis tests due to the other results not suggestive of syphulis... I'm angry to say the least since these were critical tests to the entire painful procedure in diagnosing neurological involvement. Hopefully, it had to be shipped for batch processing and results are pending. Should know this week.

The ringing (tinnitus) is only noticable when it's incredibly quiet and now only in my left ear. The evening before my lumbar puncture (10 days ago), the right ear ringing ceased.  My physician went ahead and did my regular blood serum VDRL test again last Friday (3 days ago), about one month before the 3 month mark to check titer levels anyways (results pending).

Needless to say, this is stressful. The two weeks treatment regime in the hospital also makes me feel terrible. I've convinced myself, if I am at least HIV clear out of this stupid incident (awaiting 12 week test biting nails), I'm  going to count my blessings and suck up a two week penicillin treatment if deemed reasonable by an infectious disease specialist. My hearing, vision, and mental capacity are far more important to me than 2 weeks of shame and associated hospital fees. Needless to say, I don't want to do regular 6 month follow up lumbar puncture for 2 years (4 more of these, no way). I suspect 8 month (3 more) or 12 month (2 more - ideal) punctures are more reasonable on my body and finances.  Post-dural-puncture headaches (PDPH) are beyond miserable, to say the least.

Psychologically, this has been pretty traumatizing. Trying to explain the time off for the lumbar puncture to work, friends, and family has been difficult. Explaining the two week treatment will be very difficult. If it were some other disease (say mono or a bacterial meningitis), people would understand and sympathize. Because of the nature here though, you have to keep it very private, which means dealing with everything on your own and having to lie or be very vague so as not to be socially ostracized for the rest of your life as the guy who 'has' (let's be honest, no one will risk you being 'cured') syphilis...  

Plus, everything you read online about syphilis and neurological involvement reiterates HIV infection correlation. Even Google uses keywords 'syphilis' with 'HIV' interchangeably in search results (you'll see HIV bonded in results even if you didn't include that keyword) . So, I've pretty much convinced myself I also have HIV from all the reading I've done and symptom overlap, even though tests so far have proven the opposite (12 week 4th gen still pending, 6 week 4th gen *NEGATIVE* result very comforting though as it's deemed "conclusive" by many specialists and from practical clinic experience).

There is still enough doubt cast in my mind to lead to high anxiety and nearly depression, due to both the CDC/WHO guidelines and the serological test panels provided to the FDA for approval of the Abbott Architect Ag/Ab duo 4th gen test I took at 6 weeks (44-45 days) showing quite a few detections on blood samples that only occured *after* 44 days (so much for "conclusive at 6 weeks" in my mind now).
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So the ringing in your ear went away? I have this ringing in the ear for 2 weeks now and yes I tested positive for syphilis also. I so do not want to do that spinal tap! I did also have those 2 shot of penicilin.
Me too. I also had syphilis and treated at the secondary stage (a rash over the body) one shot of penicillin 2.4. Two months later,  my ears started ringing and some headaches. Titer came down from 1:64 to 1:8 though,  which clinically is considered as cured. But, I'm not sure if this symptoms are due to the syphilis... so... we are going to try doxycycline first 28 days  (200mg per day). I live in UK. We should open a group in WhatsApp to discuss these thoughts?
Avatar universal
  hey vanc e you need to sudy syphilis better because secondary syphillis can start very early4to 10 weeks after chancre .and otosyphillis can occur anytime during the illness .also it should be retested for 3 and 6 months and every 6 months after until spinal fluid values return to normal.this is important for infected  patients to understand so they dont walk away fom this infected still.
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Avatar universal
Yeah, apparently the ear is one of the places it likes to hang out.  Causes Meniere's syndrome and other things (ringing in the ear, hearing loss).  Supposedly can get into the CSF even in secondary.  Despite my obsessive internet self-diagnoses, I am having trouble pinning down the chances/treatments, etc.  Most available studies are on HIV+ patients, and I'm basically comfortable saying that I'm HIV- (several tests came back negative... but there's always the chance that they were all false negative, I suppose).  I guess that's why doctors get the big money.

Thanks.
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Avatar universal
You are correct that would be low risk.

1. Never heard of syphilis have an effect on the ear

2. This would not be nerosyphilis, that happens years down the road. The medication should work just fine.
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Avatar universal
Traded unprotected oral with a strange man.  He rimmed me.  I didn't notice any marks, rashes, chancres (of course).  Also didn't look that closely.  I guess our penises touched each other, but no penetration.

Never had penetrative anal sex of any sort, protected or unprotected.  
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Avatar universal
What was your low risk enougnter?
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