Prostatitis - Wont go away (Enterococcus)
Posted , 9 users are following.
Hello All,
I have been fighting a prostatitis problem for about 3.5 years. In 2014 I had a sexual protected encounter and began to have problems down below. To make a long story short I have Enterococcus species in my prostate. This has been confirmed by positive semen cultures. So far the latest is I have been seeing a Urologist and he sent me over to a ID doctor. My symptoms are tip of the penis pain (this is most pain), and sometimes pubic pain, inner thigh pain, anus discomfort, and perineum pain. I have been on flow max for two years to help with the pain which has helped manage the pain quite a bit. But I still have my bad days and my good days.
So I have been given enough meds to kill an elephant. So far I have had the best luck with almost killing the bacteria with the ID doctor. When I first met her she prescribe Amoxicillin for 6 weeks. Once we were done with the meds we did a culture to see if the semen would come back positive. It came back negative which is good news but still had the pain. So we waited a little longer to provide another sample. This time it came back positive. Reason it came back negative was because the prostate has large pores and the bacteria likes to live inside those pores. So the meds manage to kill the outside portion but not deep inside.
So we tried another 6 weeks but after a week I began to have side affects with the meds. Immune system getting low from years of meds I guess. So we switched to Amox, but I began to have side affects as well. These side affects were more of the joint and muscle pain. Not any rashes or etc. So we did another culture to see if the bacteria was sensitive to Macrobid. It did come back sensitive. So we began a 6 week course. After 6 weeks of taking Macrobid we did a culture test and came back negative again. Which is good news although still had pain. So we waited about another week or two and took another culture. It came back positive. So we decided to start again for another 6 weeks with Macrobid. But keep in mind each time we stopped the meds I didn't start taking them again till after about 3 weeks. So that gave the bacteria time to rebuild while we waited for positive cultures. So the second time I started Macrobid we did it for 8 weeks and again no luck on getting rid of bacteria.
I have been told my some Urologist that I should be on meds for about 12-18 weeks. Although the ID doctor disagrees. I decided not to take a break from the meds for a lil while since my stomach began to hurt after taking all those meds. Just on a side note after taking the meds I had a endoscopy done and revealed that I had Gastritis due to all the meds.
So my next option is to do liquid meds. Which is basically IV meds. They stick a Tube down close to a vein or something like that.
My question to anyone is does anyone have any clue about how long I would be taking liquid meds? I was told it goes straight to the source and make this much more efficient. The reason I was on oral meds so long cause the prostate is a fatty organ and takes a long time to penetrate the organ. Also the meds don't have to go thru the stomach to get to the source.
1 like, 20 replies
miriam65408 JHA12470
Posted
Hi - that's a lot of meds! By Amox do you mean amoxicillin + clavulanic acid? (It's called amoxiclav in the UK).
Were you never advised to protect your gut by taking probiotics at the same time as all this stuff? All these antibiotics can have a devastating effect on your gut by clearing out all the good guys along with the bad.
I can't help you with your question about how long you would need IV meds for but I do think it's essential that you start to take a good variety of probiotics e.g. live youghurt, kefir, fermented foods such as saukraut, konbucha etc. and also capsules, of course. Also find good healthy foods which feed what good bugs you have, rather than sugary and processed foods which don't help much!
I'm surprised you haven't been offered an antibiotic called Ciprofloxacin or one of its relatives (Moxifloxacin, Ofloxacin or Levofloxacin, collectively called the fluoroquinolones). These are commonly given for prostatitis so maybe your ID doctor knows they can have very bad side effects. If you are offered any of these as an IV or oral antibiotic in the future please consider very carefully about the risks. There are many discussions on here under fluoroquinolone antibiotics which will show you what I mean.
I hope that whatever you do will get rid of this infection once and for all. Good luck!
JHA12470 miriam65408
Posted
Hello Miriam,
To help answer your question yes it was Amoxicillin (Penicillin type of drug). As for the probiotics I was never advised to take them but once I started to get stomach pains I began to ask about probiotics and was told yes I should take them. But this was years after taking meds. Also noted I have been taking differ types of probiotics and herbs to help build my stomach lining. When you get gastritis its a burning type of pain at the top of the rib cage. So since I started it really has helped but will take years to build back up.
Yes I did take Cipro and Levofloxacin (or Levoquin) and after about a week into Levo my Achilles heal began to hurt. They say its the black box warning or something like that. So I couldn't take it no more. BTw that takes some time to recover and hurts pretty bad too. So basically I don't think I can take those meds thru IV.
The ID doc said the choice of medicine will be Vancomycin. My other concern is I'm not too familiar with Central Venous Catheter. Just the thought of having tubes sticking out my chest is a bit awkward. But my ID doc said you can barely seem them. Also the main concern is what if the meds don't work? The ID doc may want to put me on meds for a short while when indeed I need to take them a bit longer. Seems to be some disconnect information with the Doc and Urologist.
miriam65408 JHA12470
Posted
Hi JHA,
You're right, since you had a problem with your Achilles heel it's absolutely essential that you are never given any of the fluoroquinolones ever again. You say it took some time to recover - people who are worse affected have still not recovered after 5, 10, and 20 years! It's not just the Achilles that gets affected it's all over - every single cell in every organ, muscle, tendon - everywhere. You felt the pain in your heel but the foundations will have been laid in your other cells as well, which is why you must make sure you don't ever take any more. Have a medi-alert bracelet made or something (it's just the kind of thing ER will pump into you when your unconscious from a car crash or something!). Sorry to sound alarmist but being seriously affected is much more than alarming.
joe74831 JHA12470
Posted
I have been working with a company called NexGen, they test your sample for the actual DNA of the bacteria in your sample. Then provide you with a list of the bacteria, and a list of the correct antibiotics to combat them. They also tell you if any of the bacteria strain you have are resistant to antibiotics. If you try this test, make sure and send a prostatic fluid sample, and not just a semen sample. one time I was not able to get any fluid to come out, and just sent a semen sample, and it came back negative. The company done a free retest, and two weeks later I was able to get a prostatic fluid sample, and it came back positive for several different bugs.
I have found a compounding Pharmacist in Nashville TN, who is very knowledgeable about prostate infections, and he is going to make me a cocktail of antibiotics that will target the bacteria strains I have. BUT one other thing he is going to do is give me a medication/food called xylitol, which he says will penetrate the biofilms, where the bacteria actually hide, while you are taking antibiotics. He says this will make the antibiotics MUCH more effective.
He really seems to know what he is talking about, so I am going to give it a try. Like you I have taken enough antibiotics over the years to kill anything, and nothing seems to ever last. You might ask one of your Docs about this.
Good luck Joe
jay111 joe74831
Posted
Hey Joe... interesting that xylitol is helpful for antibiotics to penetrate biofilms. It's just a different sort of sugar. Hmmmmm.......
JHA12470 joe74831
Posted
Hello Joe,
Appreciate the information you provided. I do have a few questions. How do you get your semen cultures tested. I have done it two different ways. The first time I had the Urologist push on my prostate till 2 drops of fluid come out and are collected in a cup. This is called a DRE. I had another Urologist do it a differ way because he was afraid of injuring me by doing a DRE. So he gave me a cup to go home and collect a sample. This can be very tricky since ejaculating into a cup to collect samples must be done precisely. Only the semen must enter the cup and NO skin must touch the cup. First clean off the tip of the penis with a alcohol pad. This next part is tricky. Then collecting the sample you must catch the first part of the semen that flys out your penis and into the cup. Do not collect any sample that touches your skin of the penis and rolls into the cup. The sample can be very subjective. I prob gave you information you already have or maybe a little to much.
Since you are replying to my message board I'm assuming you have had a positive Enterococcus result? if so on that report you will have a list of all the drugs the Enterococcus is sensitive too.
What is the longest you have been on meds? My longest is 6 weeks with penicillin type of meds. then 8 weeks with Macrobid.
From my research that I have done 6 weeks is the standard practice positive Enterococcus. But in reality many cases require for people to be on meds for 12-18 weeks. Since penetrating the prostate is so difficult.
Also from my experience once I was on meds and when I provided a semen sample. After about 4 weeks its can come back negative. Don't let that fool you. Because the bacteria will live inside the pores of the prostate. Picture the prostate like a sponge. Your meds will kill the bacteria on the outside of the sponge but getting meds to the pores of the sponge is the challenge. This is where IV meds come in to get the work done from what I am told. Apparently the meds go straight to the source.
daniel76051 JHA12470
Posted
Hi JHA,
I find your experience very interesting as I am going through something very similar. I have been given a flimsy diagnosis of chronic prostatitis nearly 2 and a half years ago. I have been through so many antibiotic courses that I have forgotten the names and amounts. Doxycycline and ciprofloxacin are two I remember very clearly. I am currently on 6 weeks of clarithromycin 500mg in the morning and again at night. Every course kills the pain for about a week and then it returns again.
I have had 2 cytoscopys, ultrasounds, urine tests, bloods and semen culture. I have also paid for further sti tests which came back negative (Mycoplasma and ureaplasma). I recently asked for my prostatic fluid to be tested and I was told that this has already been analysed through the semen culture. The GP told me the semen was made up of 90% prostatic fluid so no need for it. I have had stool samples taken...and I am currently waiting for a full body cat scan which will be in the next 5 weeks.
Maybe I need to push for the prostatic fluid to have tested. Is this something Urolgists do or a specialist?
My symptoms are sore tip of penis, redness around the opening, burning after urination and ejaculation and discomfort around the entire area really (testicular and anus).
I just can't seem to beat this pain. It's having a huge impact on my life. I don't even get my hopes up anymore when starting new antibiotic courses as I know they are going to fail. All the urologist says now is 'I am stumped ' or 'I don't know what else to advise'. This is the same with the GPS.
I wish you well
Danny
joe74831 daniel76051
Posted
Hey Daniel, not sure if your question was directed to me, or to JHA, but you should most definitely insist on the prostaic fluid being tested instead of just the semen. I sent in a semen test, thst came back negative, and 2 weeks later a prostatic fluid sample that was positive for multiple bacteria. Also one time before I sent a sample of both, and the semen sample came back with a low bacteria level, and the prostate fluid had a high count.
As I understand it, if you are having an active/acute case of prostatitis at the time a semen test is done, you may get a positive result. If you are in a semi remission state when the test is done you really should use proststic fluid to get any results.
Your urologist or your GP can order, and do the test. Personally I order the test kit myself from MicroGen, and get my Doc to sign the order sheet that comes with the test kit. Then I take the sample myself at home and send it back to the lab. The DNA testing is fairly new, and some Docs do not even know about it, but it is so much more accurate and faster than cultures.
Good luck Joe
miriam65408 daniel76051
Posted
Hi Daniel,
It's interesting that you say 'flimsy' diagnosis - have you ever had any evidence yet that there is an actual infection? Just saying as you've had an lot of antibiotics which are never good as they're busy going about causing all sorts of havoc in your body, especially if you haven't got an infection for them to go after. They can set up problems themselves by killing off your good bacteria which prevents things like thrush from getting a grip. This can affect men as well as women and would itself cause redness and soreness in the whole area.
I would say it's essential to find out if you actually do have an infection in your prostate. Get checked for other problems in the area such as thrush. and find out about exercises for the relief of pelvic pain and chronic prostatitis - sometime all you need to do is learn to relax rather than risk a load of ABs.
Your gut will probably be messed up so take probiotics to hep replace the good bacteria, and if you've already ahd a long course of Ciprofloxacin please check out the fluoroquinolone antibiotic discussions on this site before you ever (ever!) take any more Cipro or any other fluoroquinolone (Ofloxacin, Moxifloxacin etc.)
Good luck
daniel76051 joe74831
Posted
Hi Joe,
I went to my GP this afternoon and asked for a prostatic test - the doctor not only told me that he cannot do this test and that I need to go to my local sexual health clinic when my course of antibiotics have finished.....he also said that he thinks I am 'mad' and that I should stop coming to the GP so often. He said my pain is more anxiety related and made up in my head! I have heard this before. Just a way of getting me out of his office. He said every single test I have had in 2 and half years has been clear and my PSA level was 0.7 (I don't know what this means). He believes I have aseptic prostatitis...again I don't know what this means.
But I will call the sexual health clinic tomorrow and enquire about the prostatic test and head that way when this course finishes. It never ends!
daniel76051 miriam65408
Posted
Hi Miriam,
All of my tests have been negative in urine, bloods, semen and stool sample. I have been told that there is no thrush or sign of infection? My partner was also tested all the way throughout pregnancy with no findings of anything.
The reason I mentioned 'flimsy' is due to the diagnosis seems to change depending on which specialist I am seeing. The sexual health clinic believe there is nothing sexual wrong. Haematology have told me there is nothing wrong with my bloods and have referred me for cat scan, one urologist states I have chronic prostatitis where as another believes my symptoms are not adjacent to prostatitis and the GP believes this is aseptic prostatitis? I am guessing that means bacterial?
But I will monitor the effect the meds are having on my body. I am a week aim and again i feel no change in symptoms...if anything the burning is worse. I have been told there is a private doctor who specialises in prostatitis at a hospital near by in Kent. Once this course is over I think I will try tracking him down.
Thanks
joe74831 daniel76051
Posted
Wow Daniel, that is quite the Doc you have there! I think I would certainly be looking for a new GP. Its really sad that Doctors will not listen to their patients. Just google MicroGen DX and read up on it before you talk to the other clinic. That way you can explain exactly what you need.
good luck man
JHA12470 daniel76051
Posted
Hello Daniel,
I recommend that you go to your Urologist and request a DRE. If he/she agrees to do so make sure to clean the tip of the penis with a alcohol pad right before you collect sample. You will be required to hold the cup while he pushes on your prostate. Make sure your penis doesn't touch the inside of the cup. Keep it a few inches away and catch at least two drops. If you require to collect sample. See my instructions I gave to Joe above. Vey important on how to collect a sample.
Also if you do indeed come back with a positive result of bacteria. Request to be put on Flomax. Its a muscle relaxer. This will help manage the pain. Its take a few weeks to work but this will help you thru out the day and night.
miriam65408 daniel76051
Posted
Hi Daniel,
Don't guess things - either ask the doctor or use a search button to find out what the doctor meant. Aseptic means non-bacterial (the clue being if something is septic it means it's infected!).
I found this with a quick search: "Chronic nonbacterial prostatitis (aseptic prostatitis) has the same symptoms as chronic bacterial prostatitis but with negative cultures. This type of prostatitis is difficult to treat and often causes patients to seek multiple urologist opinions because a permanent solution is not found. The PSA may also be raised; similar to chronic bacterial prostatitis."
It goes on to list the various treatments e.g. weeks of antibiotics (just in case it's bacterial anyway!). Nowhere do they suggest trying the alternative route of de-stressing and exercise. Your doc who said the pain is anxiety related was right but wrong about it being in your hear. It's down there and it's very real! Men just seem to get tension aches in their pelvic areas while women get tension headaches - it's a fact of life.
Check out sites such as the pelvic pain clinic in harley street. I don't have any affiliation with them but I think the videos he's made are very good at explaining what's going on and what exercises can help. I think doctors and urologist and other specialists don't tell you about alternative reasons or treatments as they might end up doing themselves out of a job! I don't know if there are any free clinics that will help you - I know harley street is a bit off-putting but at least you can watch the vids.
I repeat that you should load up on probiotics as you've had so many antibiotics and please do stay right away from Cipro and any other fluoroquinolone (check the packet leaflet) for a good 10 years.
daniel76051 miriam65408
Posted
Hi Miriam,
I am confused. The GP states he definitely thinks it is aseptic (non bacterial) but then gives me 6 week course of antibiotics? (I'm on week 2 of clarithromycin which treats various bacteria). Why would he do that!?
I have been told to finish this course and if it doesn't work then go to local sexual health clinic for prostatic culture test. I had the semen one which came back negative. I am just drained from it all now to be honest.
I paid for a few tests from Harley Street which aren't tested through NHS...these came back clear also. But know they are a very good hospital so will check out the videos, thanks
daniel76051 JHA12470
Posted
I will definitely chase this up once this course of antibiotics is finished. I will contact my local sexual health clinic tomorrow to enquire whether they will do it. The GP has batted me to them. I think they have done this as they are fed up with me keep coming back tbh.
I appreciate your advice