I had a fever on 11/20 & a rash. Went to urgent care & was dx with pityriasis rosea. I questioned the dx and saw a dermatologist two weeks later who stated was pityriasis rosea. It spread to my scalp so I went to my pcp who found nothing. 12/27 after looking up symptoms I went to an STD clinic and was dx with Syphilis on 1/3 and had shots the same day to treat it. They asked me if I was having any other symptoms. I stated that I just started having ocean sounds in my right year. They didn't think that I should be concerned about Neurosyphilis, but because of the hearing I had a lumbar puncture. I had the spinal tap on 1/9 that did show elevated levels and I had Neurosyphilis. I'm pretty sure that my syphilis could have only been in me 6-9 months & from my understanding you typically only get Neuro after having syphilis for a long time. I began having penicillin shots on 1/10 as well as taking probenecid 4xa day. syphilis test showed 1:64. I don't have details on my test for the Neurosyphilis. Questions are
Since starting treatment the ears have improved, but I'm still extremely tired and feel that I can't concentrate as well. My glands under my right side jaw are sore or a little swollen. Is this a possible side effect of the treatment, the syphilis or something else?
I understand that any hearing loss may be permanent, but at what point in my injections can I expect to feel better or will it take even longer?
How successful this type of treatment is for Neurosyphilis. I will be going back every 3 months, but what’s the success rate of the treatment. Should I be concerned that this treatment may not work?
I was tested for HIV at the same time as syphilis and that came back negative. There would have been no chance of being infected for at least 8 weeks prior to the hiv test done at the same time, but I see a connection with syphilis and hiv. Is it possible that I could be hiv + and that the syphilis caused a neg?
Welcome to the forum. Thanks for your question -- which is very articulate and quite interested.
If you can manage to get more details of the findings in your spinal fluid, I would like to hear them. "Elevated levels" of what? WBC count? Protein level? Postitive syphilis test on the fluid, such as RPR or VDRL? I'm not challenging the diagnosis of neurosyphilis; the clinic would not be treating you as they are without being confident in it.
If you're getting daily injections, it should be procaine penicillin G, 2.4 million units daily, along with the probenecid. Can you confirm this? The official first choice recommendation for NS is IV penicillin in high doses, but when hospitalization is not practical, PPG with probenecid is entirely acceptable and undoubtedly will be effective. With syphilis of any stage or organ involvement, penicillin sometimes is not fully effective and additional treatments are required -- but there's >95% expectation that your treatment will be effective.
Your hearing impairment most likely will improve and perhaps resolve entirely. Not necessarily, but the odds are in your favor, although it may take a few weeks. In any case, I would not have expected much improvement this soon.
It's difficult to judge how long your fatigue and difficulty concentrating will improve. Those aren't typical syphilis symptoms. If this experience has been stressful -- and I have no doubt it has -- you could well be having physical manfestations of anxiety etc (which would be entirely normal in this circumstance). Whether or not that's the explanation, I would expect these to clear up fairly soon.
There are few if any medical conditions that alter HIV test results, and syphilis certainly doesn't do so. Your negative HIV test is reliable.
It sounds like you are seeing experts who are doing things by the book, and I imagine they have given you similar answers to these questions. I'm confident you will have a full and complete recovery, hopefully with no serious hearing impairment. The main thing here is to complete your treatment as recommended, as well as the recommended follow-up visits. You can anticipate your repeat syphilis blood test (which was either A VDRL or RPR test) at 3 months will be much less strongly positive, probably down to 1:16 or lower.
Both my WBC count and protein count were "high" I just don't know the numbers. I would have to call. procaine penicillin G, 2.4 million units daily, along with the probenecid is my current treatment.
After the failed dx from the three doctors I had my pcp set up the treatments, but looking for another physician as my old pcp didn't initially take my symptoms condition with much seriousness. The STD screenings were done at Harborview and spinal tap was done in conjunction with a study at UW. The staff at those facilities have been amazing, but I wouldn't say they are my "doctor". Thanks for the response. I will try and not freak out until I can go back at the three month mark to see if my numbers improve.
In case you didn't know, I directed the public health STD program and the Harborview clinic for 25 years. (I'm glad to hear the staff remains "amazing"!) The current director of the STD program and clinic is my protege (and Dr. Hook's, from his medical school days), and so is the principal investigator of the research study you are on. The latter arguably is the nation's top expert in neurosyphilis. You're not only in good hands, you're in perhaps the best hands that exist.
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