test reliability

[underdog38]

Dr Hook
My question is regarding the possibility of having neurosyphilis in the absence of any positive serologic tests.  I have had a variety of tests from nontrep, trep specific and even LP with CSF-VDRL. All negative but with elevated spinal protein and liver enzymes, pupilary asymmetry, cardiac arrythmia, muscle fasciculations and extreme weakness, etc  there continues to be concern. I understand that most MDs in the US do not support this possibility but I have come across research articles that do. What is your position on this issue. I did have a risky sexual encounter many years ago and am a gay male. Had a workup for everything under the sun including MS, heavy metals, Lou Gehrig's, EMG/NCV, CT scan all of which were negative. I do have dermatologic symptoms in the perineal area which clear when on antibiotics or when given corticosteroids but return when not using them.  I have been seen by every specialist possible with no answer and no where to go.

[Edward W Hook, MD]

As I read your post, I see no mention of positive tests for syphilis so I presume that there are none.  I am aware that there is a contingent of individuals who believe that there are cases of syphilis which defy diagnosis using the currently available tests and that persons with such a form of syphilis may have neurological syphilis as well.  Even with modern research tools however there is simply no evidence whatsoever to suggest that this is the case.

You describe a number of abnormalities (laboratory, signs and symptoms) which would suggest that something is going on.  That said, with multiple negative syphilis tests, it is not syphilis.  While syphilis of the central nervous system can raise the CSF protein, this is a very non-specif finding which could be caused by a very long list of alternative infectious and non-infectious illnesses.  

My suggestion would be to seek the care of a neurologist and/or rheumatologist at a major medical center and work with them, realizing that there will be additional diagnostic testing as they systematically work to address you difficulties

Hope this helps.  EWH

[underdog38]

You are correct in your assumption that there have been no positive serologic tests to this point.  I have been to a couple neurologists from very prestigious institutions and they ordered the all the tests but unfortunately there has been no answer.  I appreciate your sincere reply and will continue to search for the cause of  my problems.

Thanks Dr Hook

[Edward W Hook, MD]

One other word of advice.  Sometimes persons with complex problems become aware of them before we in the medical community can successfully put all the pieces together to make a diagnosis.  I imagine the neurologists you've worked with have suggested further follow-up and, to this end, i would urge you not to get frustrated and not do so.  Sometimes these things frustratingly take time.  EWH