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Untreatable Mycoplasma Genitalium
Male
Caucasian
29 Y/O
Live in CA
Unprotected sexual encounter in Southeast Asia at the end of July, (not a sex worker) while there for work.
Aprox. 2 weeks later had itch in urethra and pain at the tip of penis. Slight pain when urinating.
Took 1 G Azithromycin plus 250 mg Rocephin IM
This didn’t help much and started to develop frequent urge to urinate with little urine coming out. And started to get a watery discharge.
Was tested for Gon, chlamydia, syphilis, hsv, hiv all negative.
31 Aug- pus like discharge was present in the morning. Went to health care provider was given another 1G Azithromycin plus Rocephin.
1 week passes by with no change to discharge in the morning. I am then given 10 days of doxy 100mg twice daily, followed immediately by a 14 day regimen of moxifloxacin. During this time I still have frequent urination and slight watery discharge during the day. But no more morning pus like discharge.
5 days after finishing moxifloxacin, morning discharge comes back every day. Bought an at home mycoplasma genitalium test and took it at day 12, post antibiotics. Results back today, POSITIVE mycoplasma genitalium.
Health provider is unsure what to do at this point so he is sending me to Infectious Disease.
Please, has anyone dealt with this? Does anyone have any path to point me to next. What exactly can Infectious Disease do fo rme at this point? From the literature I've read I'm pretty much out of options in the US. The urethritis is killing me everyday and I am terrified to pass this along to someone else, or that it will never go away and that I’m never going to be able to have kids. SCARED right now!
Also I should mention that there was ZERO chance of reinfection because I was abstinent the whole time after.
Caucasian
29 Y/O
Live in CA
Unprotected sexual encounter in Southeast Asia at the end of July, (not a sex worker) while there for work.
Aprox. 2 weeks later had itch in urethra and pain at the tip of penis. Slight pain when urinating.
Took 1 G Azithromycin plus 250 mg Rocephin IM
This didn’t help much and started to develop frequent urge to urinate with little urine coming out. And started to get a watery discharge.
Was tested for Gon, chlamydia, syphilis, hsv, hiv all negative.
31 Aug- pus like discharge was present in the morning. Went to health care provider was given another 1G Azithromycin plus Rocephin.
1 week passes by with no change to discharge in the morning. I am then given 10 days of doxy 100mg twice daily, followed immediately by a 14 day regimen of moxifloxacin. During this time I still have frequent urination and slight watery discharge during the day. But no more morning pus like discharge.
5 days after finishing moxifloxacin, morning discharge comes back every day. Bought an at home mycoplasma genitalium test and took it at day 12, post antibiotics. Results back today, POSITIVE mycoplasma genitalium.
Health provider is unsure what to do at this point so he is sending me to Infectious Disease.
Please, has anyone dealt with this? Does anyone have any path to point me to next. What exactly can Infectious Disease do fo rme at this point? From the literature I've read I'm pretty much out of options in the US. The urethritis is killing me everyday and I am terrified to pass this along to someone else, or that it will never go away and that I’m never going to be able to have kids. SCARED right now!
Also I should mention that there was ZERO chance of reinfection because I was abstinent the whole time after.
**Just thought I would give an update: JAN 15 2019 (6 months post contraction)**
-I finished the Minocycline (1 Month Course) and 18 days post ABX discharge and frequent urge to urinate came back, for anyone curious of the details its really only present in the morning and it's a PUS like yellowish discharge that can be produced when milking the shaft.
- I sent another specimen off to mylabbox for testing on day 16 post ABX and it came back positive still.
- Had another ID appointment this morning to discuss further options he currently want's me to take 3 MORE months of Minocycline. During this time he is making an attempt to obtain IND approval from the FDA in order to import Pristinamycin from France, speaking with doctors who have tried this in the US it seems that this is likely near impossible. Right now with the Government shutdown he said things will also likely move even slower than they normally would.
- I will sound like I've gone off my rocker here but I'll post it anyway to see what it sparks but I've bought most of Stephen Buhners books on "Herbal Antibiotics" and I've bought a ton of "Natural" supplements along with several bottles of Colloidal silver (I've had two people tell me it's worked for them now). Yes I know what you're going to say but I really don't have a lot of options at this point and I'm not one to leave a stone unturned so it can't do anymore damage than I'm already experiencing.
- I read on a website that mycoplasma live off of Gluten so I'm going to attempt a "gluten free" diet for the next few months while I'm on the Minocycline waiting to see if I can get the Prstinamycin.
- I'm not sure what temperature mycoplasma dies at but if anyone has any idea I'm also open to trying "induced hyperthermia". Again I know this is starting to sound crazy but there aren't a lot of studies done on this thing and the US doesn't have a great system in place to treat it so I am doing anything I can! Let me know if you have any thoughts on any of this.
- I'm going to post this on some other threads to see if it get's any responses because I have read case studies about people who have failed the same treatments as myself and have also failed with Pristinamycin. If anyone is out there and has heard of a similar case/ been through this/ dealt with all of it PLEASE, PLEASE reach out to me. I know it sounds weak but it has taken it's toll on me mentally as well as physically.
-I finished the Minocycline (1 Month Course) and 18 days post ABX discharge and frequent urge to urinate came back, for anyone curious of the details its really only present in the morning and it's a PUS like yellowish discharge that can be produced when milking the shaft.
- I sent another specimen off to mylabbox for testing on day 16 post ABX and it came back positive still.
- Had another ID appointment this morning to discuss further options he currently want's me to take 3 MORE months of Minocycline. During this time he is making an attempt to obtain IND approval from the FDA in order to import Pristinamycin from France, speaking with doctors who have tried this in the US it seems that this is likely near impossible. Right now with the Government shutdown he said things will also likely move even slower than they normally would.
- I will sound like I've gone off my rocker here but I'll post it anyway to see what it sparks but I've bought most of Stephen Buhners books on "Herbal Antibiotics" and I've bought a ton of "Natural" supplements along with several bottles of Colloidal silver (I've had two people tell me it's worked for them now). Yes I know what you're going to say but I really don't have a lot of options at this point and I'm not one to leave a stone unturned so it can't do anymore damage than I'm already experiencing.
- I read on a website that mycoplasma live off of Gluten so I'm going to attempt a "gluten free" diet for the next few months while I'm on the Minocycline waiting to see if I can get the Prstinamycin.
- I'm not sure what temperature mycoplasma dies at but if anyone has any idea I'm also open to trying "induced hyperthermia". Again I know this is starting to sound crazy but there aren't a lot of studies done on this thing and the US doesn't have a great system in place to treat it so I am doing anything I can! Let me know if you have any thoughts on any of this.
- I'm going to post this on some other threads to see if it get's any responses because I have read case studies about people who have failed the same treatments as myself and have also failed with Pristinamycin. If anyone is out there and has heard of a similar case/ been through this/ dealt with all of it PLEASE, PLEASE reach out to me. I know it sounds weak but it has taken it's toll on me mentally as well as physically.
UPDATE: Just finished up with the ID Doc this morning. They were unable to do sensitivity testing, wasn’t clear why, perhaps they just didn’t actually have the means to do it. I’ve been on Docy for 2 weeks now and symptoms are very minimal, slight irritation at the tip. I received some info that Minocycline might be a better option so I shared this with my Doc, he prescribed 1 Month of it. I will come back in 6 weeks and retest and he said if that doesn’t eradicate it he will see what the steps are to obtain Pristinmycin. My Doc is open to suggestion and said I can call or email him if I find any other treatments to try, so if anyone has dealt with this with success please let me know.
In case anyone is following this, here is an update: went to Infectious Disease today, they took all the necessary samples, which included urine and swabs (ouch). Sent everything off for resistance testing. In the meantime Doc put me on 2 more weeks of Doxy. Symptoms are still the same, purulent discharge in the morning, slight watery discharge throughout the day, painful urination, pain/itching at top of penis.
Will update again once the resistance testing is back.
If anyone is going through or has gone through anything similar please feel free to message me.
Will update again once the resistance testing is back.
If anyone is going through or has gone through anything similar please feel free to message me.
They had issues treating my NGU and did sensitivity testing, ultimately it made to my prostate and they finally got it with lexofloxacin.
My point is that sometimes it can take a while to get a treatment that works. I had about 5 different antibiotics prior to the one that worked on my prostatits, and I figured this was going to turn into a chronic condition, but it didn’t. Have faith they will get it figured out
My point is that sometimes it can take a while to get a treatment that works. I had about 5 different antibiotics prior to the one that worked on my prostatits, and I figured this was going to turn into a chronic condition, but it didn’t. Have faith they will get it figured out
1)U need an antibiotic sensitivity test for the bacteria.
2)your id specialist should know what to do
2)your id specialist should know what to do
3 Comments
Ok thanks for the reply, I’m sure they know all this but if they don’t say anything about this I might mention it to them.
Hey! Did your mycoplasma genitalium get healed eventually?
I am on moxi right now for 14 days hoping that it will go away. Day 8 now, still got the bacteria floating around in my urine.
Let me know.
I am on moxi right now for 14 days hoping that it will go away. Day 8 now, still got the bacteria floating around in my urine.
Let me know.
Where do you live? Did they culture to see if it was macrolide sensitive or resistant?
You can read more about that here - https://www.cdc.gov/std/treatment-guidelines/mycoplasmagenitalium.htm It's under the Treatment section.
You can read more about that here - https://www.cdc.gov/std/treatment-guidelines/mycoplasmagenitalium.htm It's under the Treatment section.
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