[Question #9761] Very late/tertiary syphilis testing false negative worry

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29 months ago
10 yrs ago I got back w ex. I had very badsore throat that got better with cefdinir, but tonsillitis remained. Given  zpack but taken to hospital because tonsils touched. Misdiagnosed w/ mono due to false pos monospot. Confirmed neg w labcorp, cmv neg igm, and ebv acute neg, pos for latent. Was given Iv steroids and had a bad palm rash after that looked like popped blisters + burning mouth. CBC in hospital: wbc 15, neutrophils 76, lymphs low 16, Later had flat bumps on scrotum, scrotal rashes, + plaques I thought were eczema or jock itch. Now I see pics on pubmed and JAMA that look just like syph. Did fta abs, tppa, 2 cascades, 2 labcorp cia trep antibodies, 3 rpr. Scared of false negatives due to having so many symptoms, testing 10 years later, the prev antibiotics given messing w test reliability, and heavy drinking inbetween tests due to anxiety. I also have a multinodular goiter w nine nodules at 32 Worried about syph thyroditis. 
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Edward W. Hook M.D.
29 months ago
Welcome to the Forum.  Thanks for your questions although they are a bit hard to follow.  As I understand it, you have had a number of symptoms including severe sore throat, rash on the palms of your hands and subsequently rashes involving your scrotum,. These symptoms, perhaps because you have been looking for answers on the internet,  have made you concerned that you might have syphilis however you have had numerous negative tests using a variety of tests, including the Labcorp treponemal CIA, RPR tests, TPPA tests, ad FTA tests, all of which were negative.  Despite this you remain concerned about having had falsely negative tests.

If my summary is on target. I assure you that if you had syphilis at any time in the past at least some of these tests would be positive.  Once a person has syphilis, tests such at the FTA, the TPPA, and the CIA treponemal tests remain positive for life.  These problems have more problems with false positive tests results than false negative.  My advice- accept that you do not have syphilis and work with doctors to determine the cause of the various symptoms you report.  EWH
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29 months ago
Hey and thank you for replying. I wasn’t sure how much room I had to type. Basically I had a weird infection that I believe was misdiagnosed and I had a bunch of symptoms that matched up with syph but didn’t realize it, and my ex gf lied to me about being checked in our relationship. The wbc, neutrophils, and low lymphs were from before the steroids I had the palm rash after they gave me the steroids and the. Burning  mouth. Not too long after that is when the weird scrotum rash started. It would change and come and go. It looks like a lot of the pictures on pubmed. I read about discordant results, false negatives, waning antibodies and immunosuppression affecting the tests (I’m worried drinking a lot may have suppressed my immune system) other symptoms I had are white tongue, two painless mouth sores (in 2020 that I thought was just my hsv but it was INSIDE my lip) eye floaters, heavy muscle twitches, cloudy urine, eye pain, and a peeling rash around the base of my penis. I also did an ANA, RA, all negative. My calcium is slightly over range by .2 and my thyroid is all messed up but no thyroid autoimmune antibodies. I’m worried it’s tertiary syphilis. I went to two ID doctors who wouldn’t treat me based on my symptoms because of the negative tests. Can I really take confidence in them even though I’ve had so many symptoms? The palm rash and scrotal plaques are what scares me the most. Can I have done anything to make them false negative? Like bad drinking habits or just from taking too long to test (ten years) I remember she also had a “cut” from shaving I’m worried may have been a chancre. 
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Edward W. Hook M.D.
29 months ago
I understood the gist of your concerns from your original post.  I agree with the other doctors you have consulted.  Although syphilis is called the "great imitator" and can cause a variety of manifestations including rashes, if you had syphilis your tests would have been positive.  The internet is full of mis-information about syphilis.  Bottom line however is that a syphilis diagnosis requires positive tests.  When persons have syphilis tests such as the FTA, the TPPA, and the CIA tests will remain positive for life, no matter how long you take to test.  

Drinking only modestly impacts the immune system and would not keep your tests from being positive if you had syphilis.

There are many, many causes of scrotal and palmar rashes.  

I urge you to accept that you do not have syphilis, to stay off the internet, and work with your doctors to determine what is really going on.  Continuing to focus on syphilis will only mislead you.  EWH
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29 months ago
Thank you again for the timely replies and patience/understanding. 
Do you think also the omnicef and azithromycin wouldn’t affect the future tests I took now? I was reading being treating early can cause false negative results in the future, and those are both incomplete alternative regiments. Could the antibiotics administered back then cause any false negatives now? Also I was with her after I was sick and if she did give it to me could have reinfected me also. I’m just scared for my heart and brain and thyroid. Online it makes it seem like this is one of the hardest STDs to test for due to not being able to culture and relying on antibodies to detect it instead of whole organisms. Is there anything I can do to 100 percent make sure it wasn’t that. I feel so stupid realizing the symptoms now. I never would have saw the things I saw if I didn’t go on pubmed for atypical syphilis because when I searched up STDs back then it didn’t look like any of the regular pictures they show. I’m just really scared something could be being missed and this continues to destroy my body. My one PCP recently gave me 30 days of doxy empirically since I’ve been feeling weird and I noticed some things have felt better. Also, even with the negative tests. Should I tell my fiancé my concerns? The docs also said no due to negative tests 
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Edward W. Hook M.D.
29 months ago
Final responses:

Persons who have had syphilis in the past which was cured by omnicef or azithromycin would still have positive tests.  If your symptoms were due to syphilis, your tests would certainly be positive.

You have misinterpreted what you saw in the internet.  Syphilis is not hard to diagnose. The tests are quite reliable.  The confusion occurs because when persons have syphilis, tests may remain positive, making future diagnosis or interpretation difficult.    

30 days of doxycycline, while unnecessary, would cure syphilis if present.

There is no medical or scientific need to discuss your concerns about syphilis with your fiancé.  OTOH, discussing your concerns with her may help to alleviate your concerns.

This completes this thread.  There should be no need for additional questions regarding syphilis on this form- without a doubt you do not have syphilis.  Closing the thread shortly.  EWH
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29 months ago
Thank you again for the reassuring words and expert advice. If it truly isn’t that and there’s nothing else you recommend doing to rule it out, is there anything else I should be testing for? All other std tests negative including mycoplasma and ureaplasma, HIVx2 and gonn, chly, and trich. What infectious diseases can affect the thyroid? Or have similar symptoms to syph? Should I test for TB? and there are no other tests you think I should get to completely rule syph out or redo? 
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Edward W. Hook M.D.
29 months ago
The thread is over.  You DO NOT have syphilis. You need to put your fears of STIs aside and work with your doctors.

Thyroiditis is rarely if even an infectious disease and is virtually never caused by STIs.  

Further testing for syphilis is a distraction and a waste of time. EWH
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