Hi msartistm, I am in the same situation. Mine also is down only 2 fold from 1:32 to 1:16 after treatment and then it's same at 1:16 after a year. Di you get the LP and would you mind updating what happened after?
I sent along this follow up and was abotu to get some additional info, things on your end seem to be going in the right direction and you have made the right moves so far.
Thanks for the follow-up! I'm very glad this fellow got the ID consultation. Tell him not to get freaked by online horror stories about spinal taps. If done by an experienced clinician, it's really not a big deal. I tell my patients the overall stress and discomfort are similar to the average visit to the dentist for a cavity: not fun, but really no big deal. And certainly trivial compared with the potential problems of neurosyphilis.
If NS if found, IM procaine penicillin indeed is an alternative to IV treatment. However, IV pen may actually be more convenient. The ID specialist may be able to set up home IV services, where they place an IV line and the patient gives himself the antibiotic at home, with no hosptialization except maybe the first day, for training. With the shots he would have to go the the doc's office once daily. And the shots are large and pretty uncomfortable.
I don't see a question, just a statement
Thanks so much for your help! Second opinion from a referral infectious disease doctor and a spinal tap are indeed something that I'm considering seriously. I'm dreading the spinal tap, but I have done research online and based on what others have gone through, it's not that bad after all--especially if given local anesthesia and the caffeinated drinks to increase the fluid level and replace what would be taken. Basically, I'm just worried about complications of fluid leaking, headache, etc...but I'm racing my mind for no apparent reason for now.
Another thing that I want to ask you and hope you can relay to your national syphilis contact is whether or not outpatient is an option to treat Neurosyphilis.
I read the CDC guideline to treat NS is 4 x daily IV penicillin for 10-14 days OR intramuscular penicillin 2.4 (penicillin shots) AND 4x Probenecid 500mg everyday for 10-14 days. Consistently, I have found a thread of a person here undergoing the above mentioned outpatient treatment for his NS (surprisingly his titer was also 1:64 to begin with!) but that person was the only one I could find online.
Many thanks again!
I was able to send your question on to a national syphilis expect that I can get help with questions over my head from time to time. This is the response I got from her via email.
When the RPR fails to decline after treatment, one of two things is going on. Some people are "serofast". They are cured but the titer doesn't drop as much as expected and remains positive indefinitely. But usually there is at least a small drop in titer, then a stable but positive one.
The more serious possibility is that treatment indeed has failed. I think that's what is going on here. Treatment failure often recurs because there is asymptomatic infection of the central nervous system; benzathine penicillin, the kind used in this persons's treatment, doesn't adequately penetrate the CNS so infection persists there.
Therefore, the advice from CDC and most infectious diseases experts -- and what I always do in my practice -- is that people in your situation need a lumbar puncture (spinal tap). If the fluid shows evidence of syphilis, more intensive treatment (10 days of IV penicillin) is necessary. If the spinal fluid is normal, then it's just a serofast problem and no further treatment is needed -- i.e. his original doctor would be proved right. But he shouldn't take that chance; neurosyphilis often needs to horrible things, like stroke or blindness.
So it is a mystery to me why the questioner's public health/ID doctor has not recommended spinal tap. In my city and clinic, there would have been no hesitation about it. He should at least speak with his doctor about it. If the advice doesn't change he should seek out another ID consultation, perhaps at one of the nearby academic medical centers like UCLA, UCSF, UCSD, etc depending on where he lives.
1) Don't know why it has not gone down, normally see it go down after treatment.
2) Very unlikely to happen, espically after 3 rounds of it
3) I wish I could give more info, will try to have someone else take a look who has more knowledge then I.