neurosyphilis

[needsadvice99]

Hello Dr,

I am a gay male - I was treated for secondary syphilis 12/5/12 at the health dept - titre was 1:128 - HIV neg.   My first sign was a rash on my sides and arms...nothing on my palms.  I believe I contracted this from an oral sex encounter when I was out of town in July 2012.
I went to my primary, who thought it was a viral infection...and said it should clear up on its own.  So, after noticing some facial hair missing and searching the internet, i realized it may be syphilis - so I confirmed this at the clinic and was treated with 1 shot of penicillin 12/5/12.  Symptoms cleared up quickly.  Early January 2013, I notice my ear left ear felt plugged from time to time, thinking it was sinus related due to the strange weather in the northeast...temp changes.  In early Febuary, I noticed a hissing sound the next day after being out at a loud club - after searching online, I am concerned w/ neurosyphilis.  I ended up changing my primary care to a LGBT friendly Dr...as my first Dr. missed the syphilis diagnosis.  On 2/13/13, the new Dr.  stated it is very, very unlikely that I have neurosyphilis and recommended an ENT if it doesn't clear up. They did do bloodwork, titre turned out to be down to 1:16 - which they say is where it should be at this point.   So a few weeks later (3/4/13), I went back in as the problem persists and the NP prescribed a Z-pack (5 days) - as they thought I may have a sinus infection... I have some pain in my cheek and temple area on occasion...no noticeable hearing loss...
I started the Zpack yesterday.  I have noticed that I don't feel the pressure today..the hissing is still there.  I will finish the Zpack out and see what happens.
I'm not sure if my Dr. is missing something or am I over-reacting.... please advise - I don't know where to go from here.. frustrated and scared..

[Edward W Hook, MD]

Thanks for the additional information.  Unless your hearing clears completely, my advice would be to either see the ENT (as a possible prelude to lumbar puncture) or to have the LP.  Either approach will give you valuable information as to next steps.  

I agree with you that your falling titers is good news and both reassuring and reduces the likelyhood that you have neurosyphilis.  On the other hand, both you and I want to be sure this is not the case.

Please feel free to keep my appraised of your progress and to ask further questions should they arise.  EWH

[needsadvice99]

Thanks Dr Hook - I haven't yet seen an ENT.  The Dr Office is setting up that for me...there could be a long wait to get in....  I will inform the ENT of my history.  It makes me feel better that my titers are falling.  The NP and Dr both looked in my ear and couldn't see an infection or anything going on, but the NP prescribed the zpack to see if it helped......  the fullness feeling is really only in one ear...it rarely occurs in the other ear... at times it feels like there is liquid moving around in my ear as well.

[Edward W Hook, MD]

I've thought more about your questions and wanted to ask you for a bit more information.  When you saw the ENT was he/she aware that you were concerned about syphilis and, even more importantly, did they thoroughly examine you and test your hearing.  As I mentioned, strange auditory sensations and hearing changes can be due to many causes including syphilis.  The reason I am asking is that when hearing changes are due to syphilis, it is typically the result of what is called "sensory-neural hearing changes" which is something that ENTs can distinguish form other types of hearing loss.  My guess is that the hearing changes and fullness you report in your ears is coincidental and not due to syphilis but knowing more about your ENT evaluation might be helpful to me in providing advice

Regarding your other comments, lumbar punctures are typically minor, outpatient procedures that can be performed by primary care providers although some PCPs prefer to arrange for others to do the test. Either way is fine.

Typically, if you had neurosyphilis, it would be expected that your titers would not be falling and even might be rising although on rare occasions they fall before they again rise.  Your change in titers with treatment make the possibility of neurosyphilis far lower than if they were not falling.  

I hope this helps.  EWH

[needsadvice99]

Thank you for your response.  The Z-pack seems to be helping - i still have the ringing (hissing), and the pressure isn't really there as much- i noticed a little today briefly, but not like it had been.  I have had pain in my ear on occasion.   My last Zpack pill is Friday - i'll finish it out and see what happens.  To have a LP, would my primary need to order it? or would they send me to a specialist?  

I first noticed an issue w/ my ear in October - it felt like when I swallowed it wouldn't clear.  It seemed to clear up somewhat after the shot of penicillin in Dec, and in Jan the pressure started.  I did have an episode a few times where my ears were sensitive to sound - back in Oct and again in early Jan.  That only lasted a few days and no longer occur.  

The clinic said to come back at 6 months and the titre should be down to normal.  If it were neurosyphilis, how long would you expect it to re-emerge in my bloodstream and raise my titre?  Are there any other symptoms?  I noticed some thinning hair on my face but I'm not sure if that was there before or if it's now.  Not sure if Neurosyphilis would cause that...

Thank you!

[Edward W Hook, MD]

Welcome to the Forum.  I'll try to help.  First however, let me congratulate you on the success of your internet search.  I also think that your decision to swith to a GLBT-friendly health care provider was probably a good idea for you.  it will allow you and your provider to have frank and open conversations going forward.

For better or worse, what I can provide you with are probabilities, not absolutes.  My suspicion is that you have continue to do your "homework" on the internet and that is what has led to your questions.  My guess is that you do not have neurosyphilis but the only way to be absolutely sure would be to have a lumbar puncture.  Here are the facts:

1.  Indeed, persons with neurosyphilis (the stage of syphilis you had) can have neurological involvement and this neurological involvement can involve the ear and hearing.

2.  There are no data that persons who have neurological involvement with secondary syphilis need to be treated in any way other than how you were treated.

3.  There are rare treatment failures with standard treatment.  these may manifest themselves a neurosyphilis.

4.  Your blood test does indicate that you are responding well to the treatment your received.  

5.  There are many other potential causes of the sort of symptoms (the hissing in your ear).  Your rapid response to the Z-pak is more consistent with some other cause of your symptoms than syphilis.

My advice would be to continue to watch your RPR (syphilis blood test) and your symptoms.  If they recur or get at all worse I would have quite a low threshold to perform a lumbar puncture to determine if syphilis is playing a role.  Other specialists, might perform the LP now but there is no great urgency to do so.  If you are nervous about this you could seek an LP at this time.  this is an area where there is enough uncertainty that neither approach is incorrect.

I suspect that part of your anxiety is related to your original doctor's missed initial diagnosis, compounded by reports of neurosyphilis on the internet.  It sounds however as though you are now in contact with knowledgeable health care providers.  I would urge you to stick with them and work through this.  Going to other health care providers is unlikely to help and could just confuse matters.

I hope this helps.  EWH