[Question #3865] Could I have Neurosyphilis, referals denied for second opinion

32 months ago
I was dx 1/4/18 , second stage and given one shot of bicillin. Symptoms: sore throat, itchy ringing ears, headache, low fever, rash on trunk, and multiple chancres that itched on labia. They thought first and second overlapped.  CT scan 1/5/18 due to cranial pressure, no contrast. Being immune compromised from toxic mold home and lyme, I requested more TX. Could CT diminish strength of initial TX? Second shot was 2/17/18. On 2/25/18 I had bilateral foot numbness, was advised to get LP if neuro symptoms, came back negative and was given another shot of bicillin. 
Referred to ID, I questioned neurosyphilis. Was given three more bicillin to placate. But BBB is not passed. My initial titer was 1:32. The last shot I got was on 4/6/18 and a day later was dizzy. Egg size baldness on hairline appeared. My vision is hazy and room feels spinning. Ringing in ears continues and hearing goes in and out for about a min, periodically, alternating ears. 5/2/18 Neurologist DX peripheral neuropathy and recommends second ID opinion. 
My toes hurt and burn, balls of feet as well. Get pins and needles and backs of knees throb. Ringing continues, lack of concentration, irritability, light sensitivity, dizzy and balance off. 
My DR dismisses neurosyphilis as the ringing in my ears was present prior due to mold and lyme. He dismisses neuropathy due to syphilis because I wad muscle weakness about a year prior. I never had the leg pain or numbness though and hearing never went in and out. Dizziness is new and the pain on toes. Diabetes is ruled out.

My titer is now 1:1. Could it still be present in CSF, and not in blood especially with all the injections given? Thoughts? Thanks

32 months ago
I am sorry, I accidently posted one before editing gown. Do not know how to fix it. Please do not delete. Thanks
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
32 months ago
Welcome to the forum. Thanks for your question.

Your story is complex, but all things considered, I strongly doubt you have neurosyphilis. Do I correctly understand you had a lumbar puncture with CSF examination with normal results? (Your statement isn't entirely clear but seems to suggest the procedure was done and engative:  "was advised to get LP if neuro symptoms, came back negative." If so, and your CSF indeed was normal (normal levels of white blood cells and protein, and negative VDRL or RPR on the fluid) then for sure you did not then and do not now have NS. Those are the gold standard tests.

It is also true that your symptoms sound more like peripheral neuropathy, which is not caused by syphilis. And you have had a nice response to standard treatment (actually, substantial over-treatment) for syphilis not involving the central nervous system. Do you have any other medical conditions not mentioned? In particular HIV? If so, what is the status:  treatment, viral load, CD4 count? (NS is most common in HIV infected persons.)

I'll be happy to comment further if you can confirm that CSF exam was done and the results it showed. In the meantime, I hope this information is helpful.


32 months ago
Dr Handsfield, 
Thanks for reply. I am a recovering drug addict. Off of drugs since 10/20/18. I did have a prescription for tylonal 3 from 1/5/18 for headaches. On 2/25/18 I was near suicidal from syphilis Dx. I had taken two and that is when my pinky toe was numb and my face was numb, could have been from RX and I was too anxious to realize it. Of course NS haunted me.  When I went for lumbar punture, 2/25/18 I was also a week after herpes outbreak on anus. LP came back normal, protien 24 (15-45 range), WBC 0 normal, glucose 60 (40-70) and non reactive VDRL of CSF. No HIV. Other health problems are hashimoto, hypothyroid, Anaphospholibid syndrome, chronic imflamitory response syndrome, chronic fatigue, multi chemical sensitivity,  mycotoxin illness ( Dx from abnormal labs: HLA, elevated TGFB1, elavated C4a, abnormal ADH), mthfr hetrozygous A1298C, HSV 2. I have a HLA gene that makes up about 3% of population that is very sensitve to mold, I can not detox it right. Living in puplic assistance housing my last 3 apartments have been water damaged buildings and confirmed toxic mold. 
More recent, 5/4/18 labs show me positive for CMV, EBV and Varicella Zoster. Already knew I had HSV 2 IGG ( HSV 2 again I was so anxious at time of LP, either it had cleared or they did not ask if I had active infection. All I know is I had sore tested 2/17/18 and received acyclovir same date. 
1. Could I have introduced syphilis bacteria into spine as my only treatment prior to that date was initial treatment on 1/4/18. Again a day after TX I went for CT scan from headaches (read that can diminish ABX strength, penicillin specifically). Next shot was on 2/17/18 which was only 9 days before LP on 2/25/18. 
2. Could one of the viruses, maybe introduced into CSF be the cause of foot pain and numbness? Awaiting Nuerologist appt.
3. I feel infectious and it hinders my everyday life, especially with son. It is a major source of depression as since I had LP ( wish I never did till later if titer did not resolve) Now my feet constantly throb. My balance is off and my personality has changed. Do not know what is what anymore. Mold, lyme and everything else. I am scared, did I do this to my self? My concern is I introduced either syphilis, CMv, EBV, shingles, HSV 2 or even lyme at this point into NS. 
4. Again my CSF was normal on 2/25/18, but the many shots I recieved was after so is that reflective of TX response. The first shot diminished by head CT scan, then next shot only 9 days before LP. 
5. My toes were numb on 2/25/18. What warented me going for LP was research and two weeks prior my phone was viberating in my front jeans pocket, I could not feel it or hear it, a coworker two feet from me heard it and said your phone is ringing. Also, my feet were drying and peeling ( could have been being winter). I have been irritable and simple critical thinking is hard and straining. I feel like a different person. I can't relate to people because I am scared I introduced myself to NS. My eyes are more bloodshot. 
6. How do they test for occular syphilis, things are cloudy, hazy and almost intoxicated feeling at times. 
7. Would another LP at this point be conclusive of if I have NS? I know nuerolyme is not diffintave by LP, so what is the failure rate of LP for NS? False negative rate? Do you recommend I get another?
8. I fear dementia so bad. 
9. Sorry I think I used up my other response. I found you on MedHelp first, I appreciate you so much. 
10. My ID Dr says it is impossible I have NS, that another LP is not warrented. 
11. Lastly, obviously people can have positive NS and negative blood RPR, I have read it too many times. If I cleared my blood and now it os just in CSF what would I expect? A stronger decline? 
Many thanks
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
32 months ago
WAY too much info for a general STD advice forum that does not provide direct care.

You are seriously overthinking all this. If I were your doctor, or you were in my clinic, I also would not refer you for another opinion. With normal CSF it is not possible you have neurosyphilis. Very succinct replies to your specific queston:

1) No, this is an impossible scenario.
2) No virus or other infection "introduced into the CSF" could cause these symptoms. Many substance users have peripheral neuropathy, which is the likely diagnosis.
3,5,8) What you "feel" or fear make no difference. The scientific evidence is clear.
4) Makes no difference, proves you don't have NS.
6) No need to test for ocular syphilis based on your symptoms, plus your declining RPR titer indicating successful treatment of your syphilis.
7) Your LP results already are conclusive. There is no such thing as having NS with normal CSF. Period.
9) Thank you. Sorry this forum can't help further.
10) I agree with your ID doctor.
11) NS with negative blood RPR never occurs with NS less than a few months duration and is very rare in longstanding NS. In any case, your blood RPR isn't negative, so the point is irrelevant.

Clearly a major problem here, perhaps the only one, is psychological. You're obviously stressed, anxious, and perhaps depressed. I strongly recommend you a) speak with your doctor about referral for psychological evaluation and care, which I suggest from compassion, not criticism; b) stop searching the internet about any of this -- like many anxious persons, you obviously are being drawn to information which you are interpreting out of context, just inflaming your fears; and you do your best to believe the science, the strong reassurance you have had (from your own doctors and now on this forum) and go on with your life.

32 months ago
Thank you so much! Your expertise calms my worries.