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Living with Mycoplasma Genitalium??
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Living with Mycoplasma Genitalium??


I'm a straight 34 year old guy, after ending a relationship with cheating GF,  got diagnosed with Mycoplasma Genitalium all this being around 2 1/2 - 3 yrs ago.., went to the Dr., after a series of consecutive STD tests that all showed negative results.. Based on my recurring symptoms (clear discharge, burning, testicle inflammation and swelling) the 4th Urologist that I saw finally recommended me to take the test which revealed the mystery behind it all...

As you probably all know, MG is a fastidious pathogen that lacks a cell wall, making it impossible to diagnose and to treat, most urologists treat it as a NGU, they recommend introductory AB's (like 1 week of doxy and cipro) that are meaningless to cure from Mycoplasma G. infection. My problem is that all of this happened while being called exaggerated on my symptoms by Drs., meanwhile time was passing by, and the infection progressed further down my prostate, even I recall one Dr. telling me it was psychological!!.

When I got the results, I ended having as treatment a course of Azithromycin 1gm dose, then 500mg for 7 days, waited couple of weeks to see results, but symptoms persisted, in fact they came back more severe and to my luck, new symptoms appeared: back pain, swollen joints, cold sores on tongue and skin redness (which I never had before), This was a immune reaction and according to the Infectious Disease specialist teamed with my Urologist back then, they assured me that with a course of 14 days of Moxifloxacin and Flomax (prostate pill) I was going to be ok//, nothing got better, at that time I was a nerve wreck, lost my job, with a bunch of other good things in my life..  

Basically, what I'm trying to find out is if there's really a cure for strong strains of MG, that are shown to be resistant to even Moxifloxacin, if so, what is the protocol>??, or is it recommended to take a new / longer course of Moxi (been several months since my last intake) I'm I find hard to believe that urologists don't answer simple questions like this nowadays---  

Its really frustrating to me that this disease is now labeled "treatable" not "curable" according to the recent 2 urologist specialists I have seen, This cannot be??, I've been robbed of my privileges of enjoying unprotected sex with my partner and eventually kids, because of this??

I want to know if there are other people on the same boat as I am?
To please come forward and share your experiences-
and also want to know, If you have found any alternatives to the treatment that worked?
34 Comments Post a Comment
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580755_tn?1357673215
It seems like you are under the care of some Dr's who at least have gotten to your issue. We can't give out medication info, suggest you keep working with the Dr's that you have found who diagnosed you.
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580755_tn?1357673215
I will also have someone else take a look at this.
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4616538_tn?1357546678
Hi Vance, I appreciate your good intentions in helping me out/

Thanks-
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580755_tn?1357673215
Best advice I can give is pay and post in the STD Expert forum and Dr.HHH or Dr.Hook can give you better info.
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Avatar_n_tn
i am sorry to here this. I feel you pain as I'm going though something similar. was the mycoplasma test that you took specific to MG or was it an overall test for mycoplasmas? what lab was it done at. Its hard to find labs in US that do MG testing. Also what method, urine, swab or seamon did they test.

thanks
robertr
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Avatar_n_tn
Hendergab,

Any update on your search for help?
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Avatar_m_tn
Hi Hendergab,
I am a straight male having your age and the exact same problem. I live in Denmark. and I contracted MG because of a girl who i thought she was clean and never mentioned anything about it.

I got the infection about 2 years ago and from all the resources i read online, the more you go untreated the more difficult it is to get treated later. MG is a very resilient bacteria, that can adapt quickly to antibiotics.

With that said, i remember my first visit to the clinic the doctor prescribed doxycycline which is completely useless and have a high failure rate against MG (more than 80% failure rate).

then i was given azithromycin for multiple treatments with a couple months span between each and nothing seemed to work. in fact just like what you said, after the end of each treatment cycle, the MG comes back raging with all sorts of symptoms.

I went back to the hospital and they finally said they want to run some tests on the strain of MG i am carrying in order to determine its resistance to antibiotics.

It wasn't until today (actually today) when i got the answer back from the hospital that the MG i am carrying has grown resistant to azithromycin and that I should start taking Moxifloxacin.

I haven't started the course yet -- as i just got this info but i am **** scared the new drug wont work and that my life will continue to be the way it is.

I know how depressing this can be because i am facing it every single day.

I will keep you posted!

Regards,
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Avatar_m_tn
Im in the exact same boat as you.  Not much as help me.  Are your test now negative for myco?
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Avatar_m_tn
Are you cured after taking moxifloxacin treatment ???
Were there any side-effects that you noticed while and after taking this treatment ?

Sitafloxacin is another antibiotic that is used mostly in japan to treat Mycoplasma Genetilium.
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Avatar_m_tn
Solithromycin - a new antibiotic is on its way to be developed and will be in the market soon. It has been shown to be very effective against mycoplasma genetalium.
For details : see these two links:-
http://www.cempra.com/common/pdf/posters/2013%20ECCMID%20_%20M%20genitalia_Jensen.pdf.

http://www.cempra.com/products/Solithromycin-cem-101/.

You can discuss about this product with your doctor.
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Avatar_m_tn
Heu just wondering how yo went with any further treatment. I was diagnosed with M.Genitalium approx a month ago. I contracted it from unproected sex about 3 months earlier. I completed a 5 day course of azithromycin which seemed to suppress the symptoms. After about two weeks i revisited my doctor and was prescribed a 10 day course of avelox of moxi... Its a pretty nasty drug from all reports but I'm about one week in and symptoms seem to have disappeared and I've so far managed to avoid any side effects.

Having said that I'm suffering from some nasty muscle aches. I have since the very early days of contraction and they seem to have hung around. I also get sporadic burning/itching sensations throughout my body. Is anybody else suffering from this?

I have been tested and cleared of chlymidia, gonnorhea (Gonorrhea), hep b & c, hiv, herpes. I'm just really curious if nobody else is offering the body aches at all. Mostly in my biceps and forearms on both sides.
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4616538_tn?1357546678
Hi there Rob, yeah, the mycoplasma test that I took back then it was a straight PCR test for mycoplasma genitalium.

I believe most of the labs in the US have this test in their catalogs..

Wish you the best, now ive been taking natural treatments to cure my condition..
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4616538_tn?1357546678
HI whoever533

Sorry for the late reply as I´ve been seeking other alternatives for curing this situation, hope that you´re ok and cured of this tiresome pathogen,

Im here to hellp-
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4616538_tn?1357546678
Hey Shaky , its been a while since I took the test, it tested positive for mycoplasma genitalium,

How are you lately?
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4616538_tn?1357546678
Hey roofbeers,

Yeah, had those symptoms as well, doctors say that it is because the immune system is trying to attack the pathogen, but because mycoplasma lacks a cell wall, the immune system gets confused and attacks good cells at the same time, making this an auto immune situation for some people like us..

I can give some good advise in natural treatments that have lowered my symptoms to almost to 0 or 1 in pain and inflammation.
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Avatar_m_tn
Hey there,
I have also been having the same symptoms with no lasting help from moxifloxacin or others such as zithro or doxy. What are the alternative treatments that you have been using? I really need to know. Please help!
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Avatar_m_tn
Hi,

How soon after contact did you experience symptoms of infection?

How did you get tested for M. Genitalium?  I heard most labs aren't equipped to test for this.

Thanks.
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Avatar_m_tn
Hi,

You mentioned you treated your M. Genitalium with azithromycin several times , but each time symptoms returned.  Then I assume symptoms diminished initially after taking azithromycin before eventually returning.  

So I'm not sure how symptoms could diminish at all if what remains should be azithromycin-resistant strain of M. Genitalium.  How long after taking azithromycin did symptoms return?  Perhaps it could be azithromycin may have analgesic properties that can alleviate symptoms for a short while.  But if symptoms don't return until a few weeks later, the possible analgesic property of azithromycin doesn't come into play.

So it seems azithromycin still has some activity on your M. Genitalium infection.  A long course of azithromycin could be effective.
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Avatar_m_tn
I think I'm in the same situation as the Op, I've went thru several different courses of antibiotics cipro, doxy, flagyl, cefuratrax something and even moxy. And still have this clear discharge along with slight pain in and around scrotal area. Thank god hsv and hiv was negative too. My doc will be sending me to a infectious disease doc. God help us please!
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Avatar_m_tn
Hender was these tests for myco done with urine or swab? Thanks
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Avatar_m_tn
I'd like to hear about the natural treatments!
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Avatar_n_tn
i like to ask questions to dr.HHH or Hooks so pls let me know how should i do that..thanks
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Avatar_m_tn
HI there, Im going through these same problems now and its been really stressful. Ive done a 20 day course of mox and now my symptoms is lower but not gone. What was the natural remedy you did and how are you now?
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Avatar_m_tn
Does anyone have updates they can share??
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Avatar_m_tn
Sorry to hear all that, I think that is what I am facing now. I tested pos for chla, 4 months ago and then after month of AB tested negative, but still for past 3 months have clear mucus only if i stroke from base. That is my only symptom and this past week went to Health Dep and they said i have NGU. So i too am confused on what i got. With MG, is that something you can pass back to partner?  
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Avatar_m_tn
I am 31 male from Australia who has just won the battle against MG after fighting it for 6 months.  I think I got it from someone in China.  Anyway, I tried doxycycline, ciprofloxacin, norfloxacin and azithromycin, none of them worked.  What did work was a combination of Moxifloxacin 400mg one per day for 10 days (in the morning), plus Rifampicin one pill per day for 10 days (at night).  I know many of you have tried with moxi and failed, but for me the combination of both Rifampicin and Moxifloxacin for 10 days did the trick.  Good luck to everyone
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Avatar_f_tn
I am so happy to hear you have beat MG. It gives me hope there is a cure.

It is the first time I have read of this combination of antibiotics being used.

Like you, I have tried doxycycline, ciproflaxcin and azithromycin, but the symptoms still return after a while.

My biggest problem is the medical profession in the UK. Few doctors know much about MG and are therefore blind to the idea of investigating it as a root cause of other symptoms. It's a nightmare.

Tell me, what kind of doctor treated you ? Infectious disease specialist? STD doctor, or just your GP?

Did you get a PCR test after you had tried the doxy, cipro, azithro ? I ask because I initially tested positive by PCR test, tried certain antibiotics, had another 2 PCR tests over a year and they came back negative. I am sure I still have an MG infection as the symptoms are the exact same as when I tested positive.


Thanks
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Avatar_m_tn
I read that in Europe pristinamycin seems to be the last resort cure and that the UK allows its use for resistant MG strains.  It is also being used in Australia.  All of the scientific papers I can find from the last two years show that resistance to pristinamycin is quite low.  I don't know how expensive it is, maybe that is why it isn't used much.

I asked this question in another post, but it seems that it may be worth a trip to France and a quick meeting with a doctor to give it a shot.
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Avatar_f_tn
Thanks for that info.

I have had to email an infectious disease consultant and a MG specialist in order to get a more accurate idea of the next steps forward. With this information, I am now armed with enough to prove my present consultant is dealing with my problem in the wrong way.

Never mind getting a cure, getting an open pair of ears and an informed mind is proving tough enough!

I'll do some research on pristinamycin. It's not one I've heard of.

Thanks again
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Avatar_m_tn
I know the feeling about getting some open ears.  I was told several times it was impossible for me to have MG with the meds I had taken.  I showed the doctor some recent scientific papers on the subject and he showed me the latest app on his phone that they use for prescription info.  They pay a yearly fee to keep things updated and for its use, and there was no mention of any resistance and it was still calling for a single dose of azrithromycin for treatment.

Let us know what you find out, please.  It would very well be worth a few thousand dollars to me to fly over from the US to France and pick up a dose of pills.....if I knew it would work that is.  

From what I can gather it takes 1000 mg 3 or 4 times a day for 10 days.  Pyostacine is the trade name.  The active ingredients in the US are only available in as Synercid, which is an IV only drug that has to be administered twice a day for at least 7 days.  I can't find any info on whether it has been used in the US to clear up a MG infection.  Even if it worked, it would be a lot cheaper to fly to France and just take the pills.

For an infection that affects 25% of NGU cases and that almost 20% of those experience treatment failure with moxi and 40% with Azithromycin, it amazes me the number of medical professionals who are unaware of it.  I really wonder how many people are suffering from misdiagnosis.
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Avatar_m_tn
Can you please provide the advice on natural treatments that have lowered your symptoms?
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580755_tn?1357673215
That is not a cure.
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Avatar_m_tn
I understand, but I've been battling MG for awhile and am looking for any sort of relief I can get.  My doctor has just prescribed for me the course detailed by brisbane_guy (moxifloxacin and rifampicin) but everything I read on rifampicin is that MG is resistant to it.
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Avatar_m_tn
What is the mg of rifampicin that your doctor prescribed ?

I was prescribed and taken all the meds, Azithromycin, Doxy, and moxcifloxacin but I still have symptoms. Another doctor has again prescribed me moxifloxacin 400 x 10 d. I'm yet to start the course.
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