[Question #773] Mysterious Pathogen?

52 months ago
Dr. Handsfield

Some context may be missing due to restricted length.

In January of 2015, I received unprotected oral sex from a partner with a history of pulmonary issues. The result was extreme discomfort at the opening of my urethra. We tested for Gonorrhea, Chlamydia, Trich, and HIV – all negative.

The pain moved down the urethra and into the pelvis and into the right epididymitis; then my semen changed color (yellowish). To be clear; this started with pain in the urethra only, and has progressed over a period of months and only on the right side. I have never seen swelling, sores, redness, heat or anything else – just areas of pain or “stinging” that fluctuate.

On a scale of Zero to Ten; pain in Jan 2015 was a nine. June of 2015 was a six. Today it fluctuates between one and three – depending on the week. Obviously still bothers me.

In that time, I have been to one general, one internal, three Urologists, and two infectious disease specialists. I have had 7 NAAT tests (all clear), a prostate exam show “normal”, two semen cultures that show “no growth”, repeated urine cultures that show “no growth”. My bloodwork shows “normal”. AFB stain and culture, and urine for Mycoplasma genitalium NAAT. All “clear”. Ureaplasma Spp Naa, Mycoplasma Hominis Naa, Mycoplasma Genitalium Naa – all negative. 

My diet is solid, I work out regularly, I do no smoke, I drink on rare occasion and I do not take illegal drugs.

RX Tried – (allergic to azithromycin)

Ceftriaxone, doxycycline, trimethoprim/sulfamethoxazole, amoxicillin, and Avelox all failed. Saw some relief with metronidazole.

The infection / symptoms linger. It seems to be slowly spreading but at the same time reducing. No solid diagnose but saw relief after taking metro which no longer works. It is has been difficult to treat without a diagnosis – though I am now trying with natural means.

Bacterial Exposures include Gardnerella in mid - 2014 (seems unlikely), fairly high doses of probiotic bacteria right as this began (Acidophilus with Bifidus), unknown bacteria from former partner’s pulmonary issues.

If anyone is going to have an idea or even a suggestion, I figure it’s going to be you. And, you are probably going to be my last stop. Hoping you can help.

Do you have any thoughts or ideas on this? 

Edward W. Hook M.D.
Edward W. Hook M.D.
52 months ago
Welcome to our Forum.  Thanks for your question.  Clients are not permitted to choose who answers their questions.   As per Forum Guidelines, Dr. Handsfield and I answer questions interchangeably and I happened to pick up your question. 

Thanks as well for your clear and concise description of your problem.  You appears have been thoroughly evaluated.  The signs and symptoms you describe are not those of any currently recognized STI syndrome and I see little to be gained with further STI testing or treatment.  Such problems might be due to chronic nephrolithiasis (kidney stones) although I expect this has been ruled out by your on Tuesday, June 23 at 2:00 PM ETnephrology consultations.  Your symptoms are also suggestive of a more recently appreciated problem called the CPPS or Chronic Pelvic Pain Syndrome, a challenging problem well described on Wikipedia.  Although you did not ask, this problem does not pose a risk or problem for sex partners and, as appears to be the case in your situation, typically resolves gradually and spontaneously over time, irrespective of what treatment is provided.   It sounds as though this may be occurring in you case as well.

I hope these comments are helpful.  EWH
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52 months ago
EWH - Thank you for taking a crack at the question. My follow up will consist mainly of clarification; I just want to be abundantly clear.  If you feel a retort is necessary, then by all means do so but if the result will ultimately be the same, it is not entirely necessary.

1 – A nephrologist is one doctor I have not seen as of yet – though the urologists did not suspect such issues. However, they never tested specifically for stones that I am aware of.

2 – My records do not reflect a nephrology appointment or testing on Tuesday, June 23 at 2:00 PM, so I am a little confused by your statement about that. What I did do on June 23rd was experiment with a 2g dose of metronidazole – where I got my first hint of relief. Ironically, this is has also been why I have been a little paranoid about a slow growing anaerobic infection of some type - which may not show itself on the tests taken because no one would be looking for it. Furthermore, yellowish semen (from the dead white blood cells) leads me to believe that some kind of fight continues.

3 – I am forced to agree with the CPPS label for now – I guess science just hasn’t figured this one out yet. At least it doesn’t look like it’s going to kill me quickly. Side Note: I am finding more information when researching “Lower Urinary Dysfunctional Epithelium” (LUDE) instead of CPPS. It appears the “CPPS” classification might be slowly going away (just FYI).

Anyway, I hope you are correct in that my situation is resolving gradually. I know the data suggest that it is, but it has taken quite a bit of natural remedy to get me this far. I guess I was hoping that perhaps there was something new that I had missed somewhere. I guess not.

Thank you for your time.
Edward W. Hook M.D.
Edward W. Hook M.D.
52 months ago
1.  I am skeptical that a nephrologist will have much to offer in clarifying the origins of your difficulties.
2.  My apologies, the words "Tuesday June 23 at 2:00 PM ET" we're insert by the computer from another message.  They were not part of my intended response.
3.  The terms LUDE and CPPS refer to different but possibly overlapping syndromes.  I consider both terms to be acknowledgements of incomplete understand earring and the need to know more.  I do agree with you that whatever you have will most likely run it's course without serious complications.  I see little benefit to further antibiotic therapy.

Take care. EWH
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