Infection Success story after 9 months of hell
I have not posted here yet, but I have been lurking for the past 9 months and have likely read every single post. This post will be long, but I want to highlight everything about this STD test process to help others in the future, as past posts have helped me significantly. For MGen testing, I also would like to (like many others) highlight the absolute incompetence of many doctors and emphasize that you will have to fight for yourself. Thank God for Private Labs.
Background: Gay male in northeast USA – In a relationship for 4 years (only partner ever).
Late September 2020
My symptoms began after a summer of tremendous stress and anxiety – clear/cloudy discharge, increased frequency, and pain. I went to urgent care and was tested for chlamydia/gonorrhoea. I offered ABX to treat these, but I declined, as I knew my partner did not cheat. STI Test results came back negative. Days later, all symptoms got worse, and I returned to a different urgent care, where I was given 1g azithro and an injection of ceftriaxone, being told that this would kill any infection I had. My STD Test was negative for Trich at this point. Microscopic urinalysis showed WBC and RBC. My symptoms did not change, so I returned to urgent care 2 days later and was given 10 days of doxy and 10 days of metro, and told I was to see a urologist if symptoms persisted. Symptoms went away on doxy but returned shortly after.
End of Oct
I was in and out for my first urologist appointment in 10 minutes. I was told I had prostatitis (shocker). He did not do any mGen tests, did not feel my prostate, and did not look at anything. Said discharge was prostate fluid. He told me to stop lifting weights. At this point, I had begun my research, came across this forum, and decided I needed to get tested. I did not realize how hard this would be. Unhappy with this uro, I scheduled with another uro. Encouraged continued sex.
The STD Test nurse asked me to pee in a cup for urinalysis for the second urologist appointment. I had told her that I was having discharge and wanted to make sure the doctor would see it, so if I could do a urine test later. She went back and asked Doc; Doc said I had to pee first, so I did. In the exam, the Doc looked at the penis, told me he saw no discharge, and that the urine test was clean. Therefore, had no infection. Told to wait and see and do a bladder diary. I asked him to test me for MGEN; he said okay. He got to the lab and ordered the ureaplasma/myco hominin culture (of course).
Before getting these results back, I saw a new PCP from whom I had heard good reviews. She said that my symptoms could be that of an inflamed bladder and prescribed me a heavy dose of Azo bladder relief. Encouraged continuation of sex with a partner as urine test clearly showed no infection. I began taking an OTC prostate supplement packed with anti-inflammatories – this took away my discharge and reduced my pain just slightly.
Lab results came back.
I tested positive in a Ureaplasma Test and thought I had found the problem. I took (along with my partner) a 10-day course on doxy. At this point, I stopped having sex. Again, the symptoms went away but came back in two weeks. I returned to PCP a month later after no relief and begged her to test me for MGEN. After multiple back and forths, she agreed, and I FINALLY got a test for MGEN 4 months into the ordeal. The test included both mycoplasmas and ureaplasmas.
FOUR months of being told I had no infection. I was positive in my STD test report. I also tested negative for UU at this point. This PCP had finally done more research, and we were on the same page – 10 days of doxy and 10 days of moxi. Both my partner and I took this at the same time. I thought for sure this would be the end. Symptoms went away on doxy, and the pain returned while on the Moxi. The discharge never returned, I am guessing because I continued taking the prostate anti-inflammatories, which always took away my discharge. At this point, I had assumed that grit was a 100% cure, so when my pain continued, I assumed I was dealing with CPPS. I was under a lot of stress when this all started.
I went back to a urologist, and he was clueless about MGEN. He said Moxi would have killed any infection I could have had. He ordered kidney scans, bladder scans, and prostate scans. The prostate came back mildly enlarged; everything else was normal. I had been reading about CPPS and realized that my symptoms started after anxiety/stress, so I asked about PT, and he agreed to provide a script. Then, I had to call them about 5 times before I got a script for this. I went to one session, and PT could not find any significant tightness (I am a PT, so I knew pretty much what to do at home regarding stretching).
Three months after my first positive and 2 months off ABX, I returned to PCP only to find out my doctor had left. I got a new doctor and asked to get another test for MGEN. They said no because the doctor did not know what it was…unreal. Luckily, I had work relations with this office, and the receptionist found a doctor to order the test for me. I took the test and was still positive, even after Moxi.
Back to the doctor who had ordered the STD test, she had said that MGEN is like BV in women and that I likely got it from a pool or hot tub (my god). However, I was able to convince her to prescribe me minocycline for two weeks, and she had said she would prescribe it for a month. I asked for Mino based on a study that showed good results in multi-resistant strains.
I called URO to tell him the results of the MGen test, and I was referred to infectious disease. THANK GOODNESS, or so I thought. I was seen by infectious disease after OVER A MONTH. They required my URO office to fill out the referral form, which the office could not comprehend. I filled it out myself, and it worked.
Pages for May
Finally, see infectious disease. At this point, I was 3 weeks into minocycline,ne and while discharge had disappeared, I was still having pain. However, the pain had decreased by ~25%. After failing 1g azith, multiple courses of doxy, and moxi, I was ready to push for lefamulin. I brought all the research articles.
Finally, I saw my first good doctor. The first to know about MGEN is the first to understand the treatments. He wanted me to try the 4-daf azith course o combined with my last week of mino. He had said Lefamulin was an option (He had never heard of it for many, but he read my provided research article and was very impressed and happy that I provided this). I had no faith that azithro would work after taking 1g and having no symptomatic relief. I combined the zither (1g on day one) followed by 500mg for the next 3 days.
For the first two weeks after antibiotics, I was convinced that I was still positive in my STD test. I still had bad pain, especially after urination. It was a constant burning sensation. At 2.5 weeks off, the pain diminished significantly. I was cautiously optimistic. At 3 weeks off, the burning after peeing was minimal. I got another micro urinalysis, which was negative for WBC and RBC.
At 3.5 weeks off, I took my T and OC, and I received my NEGATIVE results just today.
It took nine months, many incompetent doctors, rs pointless tests, >$2,000, and failing various treatments to say that I am infection-free finally. I still have some minor residual symptoms, but I have no more pain. No more discharge. The tip of my penis is slightly red, and I have the feeling that I am not fully emptying my bladder. The urine feels stuck inside my penis. I believe that while this could be cops, I had this infection for 9 months…it is going to take time for my urethra to heal. Months, not just weeks.
I have no clue why it took me 3 years to get symptoms.
My guess is it was because I was under significant stress, which lowered my immune system. My partner tested recently, ly many months after MO, XI using my lab box rectal swab, and was negative. This was his only STD test. He was my only partner, so I could have only gotten it from him. I have no clue why Moxi worked for him (unless false negative) and failed me. I do not know if Mino alone would have worked or if the azithro at the end is what cured me. While Zither 1g didn’t dent my symptoms, I took 10 days of doxy 2 days, after which reduced my symptoms considerably. I had sex after this (being told there was d no infection), so maybe azithro/doxy did wo,rk, and I got re-infected.
This was long, much longer than I thought, but I am mycoplasma-fr ee, and I hope this story can help someday.
tldr: symptoms started as discharge, pain, and frequency. Took azithro and doxy – was positive on an MGEN test after this (Can not rule out reinfectiTook took 10 days doxy, 10 days moxi – still tested positive. Took minocycline for 28 days, with 4 days author during the last week – tested negative 3.5 weeks Later.