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 Prostatitis won't die 
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
So I dropped off my specimen for culture at Johns Hopkins yesterday. It was a complete debacle as I was expecting. Once again the order was screwed up, this is the third major metropolitan hospital that has messed this up on me. Even though the description and order number of the test was "sterile body fluid culture - semen", they entered the lab request as a semen *analysis*. Keep an eye out for this if you are getting a culture. The *analysis* checks for things like sperm count, ph, WBC...NOT a culture. And only special labs will do the analysis and it is very time critical. So they freak out when you show up with your semen and they're like oh no we don't do the analysis *here*...you have to go somewhere else for that. You have to explain to them that someone screwed up the order and it's just a standard body fluid bacterial culture that just so happens to be semen. It took me about 1.5 hours to go through that again yesterday and involved various chains of management.

But it may have turned out for the best. I had one of the managers personally walk me down to the microbiology lab where the techs actually do the culture (patients don't normally see this) to deliver the sample by hand. I got to talk with one of the techs for about ten minutes on the whole procedure while I was there as well. One important piece of info I extracted was how they decide what abxs to do the sensitivity on if the culture comes back positive. Apparently based on whether it's gram positive or negative they run it against a huge panel of abxs by default to see what it's sensitive to (no surprise there), however it is up to the requesting doc, my uro in this case, to determine which abxs they report out on the test results. So as a patient you need to be involved with your requesting doc to make sure he/she is requesting report of sensitivity on abxs that actually penetrate the prostate. The techs don't care at all that it's for prostatitis, they'll just put down whatever abxs the doctor wants to see on the report. Well at least that's how they explained it to me at Johns Hopkins, YMMV.

Thinking back to my last positive enterococcus culture and how it listed on the report that it was sensitive to penicillin and vancomycin, it's clear that my uro didn't have a grasp on the abxs. Penicillin has poor prostate penetration and IV vancomycin was never really a realistic solution for chronic prostatitis, but he could have requested any number of different more appropriate abxs had he wanted to. I wish I knew this stuff back then.

In any case, I hope it comes back clean!


Tue Nov 29, 2016 2:01 pm
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Post Re: Prostatitis won't die
Woo hoo! Got semen culture results back. Clean! Only item of note was "Light growth of normal skin flora". So I've now had four semen cultures - two at Labcorp and two at major hospital labs. Both of the hospital lab results were clean but they mentioned growth of normal skin flora. The Labcorp results (including one with enterococcus) never listed anything about normal skin flora growth. I assume it's just a difference in reporting protocol and doesn't mean anything but found it interesting nonetheless.

So at this point I accept that there is no longer any sort of infection, assuming there even was at some point. I'm still a bit suspicious of that enterococcus result back this summer.

In fact I have great news to report about my internal self-stretching exercises that I've been doing but I'll make a separate post about those later this evening perhaps.


Tue Dec 06, 2016 12:39 pm
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Post Re: Prostatitis won't die
Prostate 454, glad to hear it. My enterococcus was sensitive to the same as yours. My Uro prescribed Penicillin VS but my PCP got wind of this and said it should be Penicillin G but switched me to amoxicillin for 3 weeks, 500 mg 3 x per day. I go back next Friday for another semen test.

My PSA levels have never been high and on DRE, my prostate was never enlarged. My ID doctor (first apt yesterday) says its doubtful that it is prostatitis.....enterococcus in the semen is the only thing im chasing at the moment.

what ABX finally did it for you?


Tue Dec 06, 2016 3:32 pm
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Post Re: Prostatitis won't die
Assuming I had an actual infection then it would ultimately have been the Augmentin that got rid of it. 5 weeks total. During the last two weeks I added moxifloxacin in, but I doubt that was the key because I had been on moxy-only for 12weeks earlier this year and apparently that didn't do the trick.

As an aside, and filed under the law of unintended consequences...for the past month or so my mouth has been burning on and off. It feels exactly like if you had accidentally drank a scalding hot cup of tea not realizing how hot it was until it was too late and burned your tongue. I was at my doc last week and she did a tongue swab for culture and it turns out that I have a klebsiella oxytoca infection! Argh! Likely due to overgrowth from the long course of Augmentin in August. I'm certainly not planning on taking any systemic abxs for it, I was prescribed some antibiotic mouthwash to hopefully get it back in control.

These long courses of antibiotics are a curse! I think they've caused me more problems than the actual prostate pain did! There truly is a delicate balance in natural flora that can get all screwed up when you kill off all your good bacteria.


Tue Dec 06, 2016 5:35 pm
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Post Re: Prostatitis won't die
Prostate454, our case are so closely aligned. I too have been having mouth sensitivity issues. Being close geographically, you sure we weren't with the same girl?? jk

Amoxycillin didn't do crap for my enterococcus, I don't think as im still symptomatic. Im planning on a course of good probiotics to help with all the abx as well.


Wed Dec 07, 2016 10:15 am
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Post Re: Prostatitis won't die
pleasenomore wrote:
Prostate454, our case are so closely aligned. I too have been having mouth sensitivity issues. Being close geographically, you sure we weren't with the same girl?? jk

Amoxycillin didn't do crap for my enterococcus, I don't think as im still symptomatic. Im planning on a course of good probiotics to help with all the abx as well.


Ha ha she was on the other side of the country in my case so probably not. Funnily enough when I told my uro the story he actually said that a while back he was involved with a lot of Latino patients who were getting very bad gonorrhea infections near the Mexican border.

Do you still test positive? I've tested negative twice now for enterococcus and I'm still symptomatic, so the two might not be linked as I've come to accept in my case.


Thu Dec 08, 2016 5:29 pm
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Post Re: Prostatitis won't die
I go next friday for another test. I just finished ABX so they want to wait a week before retesting. I just tested positive for acute Lyme disease though so either that is false or this is a whole other piece to the puzzle.


Fri Dec 09, 2016 3:05 pm
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Post Re: Prostatitis won't die
Been a while so might as well update:

1. I visited my uro again this week for a followup. I didn't really have any plan for the visit other than I wanted to make him do a very thorough DRE and tell me what he thought (I've only eve had one DRE and that was a year ago at a previous uro). His synopsis was that my prostate was mildly enlarged, rather firm, but not boggy at all. Additionally I did not experience any acute pain when he pressed on it. It was his opinion that it is not infected based on feel, and it's not BPH because BPH generally doesn't produce pain symptoms. At this point I'm fully past any possibility of there being a lingering infection anywhere. My uro is convinced that this has to be CPPS related as well because I've been on so many antimicrobials it doesn't seem possible for there to still be an infection.

2. I mentioned in another thread that I modified my internal stretching to concentrate more in the anterior levator ani and prostate area. See page 297 in your copy of AHIP (6th edition). It's been a revelation so far. It has drastically cut down on my prostate symptoms for the time being. I'm not sure if it'll be a cure or not yet, but even if it's not a cure it allows me to function just about normally. I even rubbed one out last night (for testing purposes of course...) and no flare up today. Hopefully it wasn't a fluke.

3. We'll see how it works out, but I'm exploring the idea that the prostate is inflamed due to tension from the levator. I consider this because since getting really serious about my internal stretching I have noted all sorts of connections. For example, if my obturator is very tight I notice a very strong burning in the perineum, rectum, buttocks, and scrotum. I also can feel a pulling on my coccyx. But there's obv no infection in my obturator - all those symptoms are muscular and when I stretch those out they go away completely. I've been ignoring the prostate area of the levator, and if they're tight as well then it could explain the burning in the prostate. At least so goes my theory. I also wonder if a light massage of the prostate might be therapeutic (I need to research this).

4. Oh and I'm still dealing with this stupid black hairy tongue and klebsiella oxytoca infection of the tongue. It burns like a mother but I have no plans of taking antibiotics (that's how I got the infection in the first place - bacterial overgrowth following augmentin). I had some special mouthwash that made it go away but it came right back after I ran out. I'm just going to keep getting refills on it since it helps, and with my co-pay it's actually cheaper than regular old listerine lol.

That's the news for now, hopefully I will have more positive news in the future.


Thu Jan 05, 2017 11:22 pm
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Post Re: Prostatitis won't die
prostate454 - You could try gargling with colloidal silver or something for the tongue condition. Maybe add a few drops of garlic oil to it as well. All the abx gave me thrush like tongue and doc gave me nystatin oral rinse. I am yet to try, but if it's just gargling and not actually consuming it, I'll probably give it a shot.


Fri Jan 06, 2017 11:48 am
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Post Re: Prostatitis won't die
Bored at work so I might as well update:

1. Since last update I've just been doing internal stretching which has definitely helped in spades. I've had a handful of 0/5 pain scale days in the past month, which is pretty nice considering I've not really had any of those prior unless I was on steroids or abxs...and all I'm taking now is Prosta-Q and some vitamins.

2. I got myself off all meds, including tamsulosin. I had a brief flare as I went off the tamsulosin but it died down, and it's nice not to have any side effects from that anymore.

3. I'm in the midst of a minor flare right now which has my legs feeling a bit tingly and numb, but I think that's because of muscle tightness. I did an experiment and tried two nights in a row of very rigorous prostate massage to see what happened (I used quite a bit of pressure). I don't think I'll do that again, it's obviously irritated me. Back to doing the very gentle thing. I need to just accept that the pelvic muscles are not typical skeletal muscles and they're not made to handle extensive manipulation. But these are just lessons I've had to teach myself as I feel my way (har har) through this self-stretching thing. Ejaculation is still my number one perp for flares. Sometimes it's a lot worse for a few days afterward....sometimes it's better. I can find no pattern or smoking gun, but doing internal stretching afterwards does help for sure. I'm ejaculating twice a week max now, I don't see that changing in the near future.

4. The Prosta-Q is definitely a supplement I recommend at least trying once for a month to see if it helps. I certainly noticed a mild improvement. Next I'm going to try just using regular old bromelain/quercetin to see if I get the same effect for a cheaper price though.

5. I don't really have any other plans right now. I still might head up to see Dr. Pontari in PA, but I really don't know what he'd tell me that I don't already know - I don't ever want to take another abx unless it basically guarantees a cure. I guess you could say I'm in the wait-and-see mode right now.

6. Oh yeah, still messing around with the post-abx oral thrush symptoms. I have one week left on my fluconazole and symptoms are pretty good now, but I still get the white coating on my tongue, which wouldn't bother me if not for the burning that often accompanies it. In any case, Wednesday I went to my ENT and had a bacterial/fungal culture taken on the white stuff to see what it is. Waiting on results of that.

So a definite improvement since my last update, but it still seems pretty glacial during times of flare ups.


Sat Mar 11, 2017 2:08 pm
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Post Re: Prostatitis won't die
Thanks for all that info. The pollen extract is another thing you may want to keep in your radar. If I remember correctly, you tried bee pollen which is a different thing. Pollen extract can be found in graminex, q-urol and prostaphil. I haven't tried it and probably doesn't make any difference, but since you are systematically trying everything, I wanted to mention it.


Sat Mar 11, 2017 5:49 pm
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Post Re: Prostatitis won't die
These supplements are such BS. I love how they market Q-UROL as an "extra strength version of Prosta-Q". Well who in the world with CP is gonna say "golly, I really only need the regular strength version since I only want to see xx% improvement instead of xx+5% improvement"? In any case, you are right I tried bee pollen. Maybe I'll try Q-UROL and they'll get my money for another month since it's "extra strength" with pollen extract. Whatever, it's worth a shot.

In other news, in A Headache in the Pelvis they are against a direct prostate massage for when you perform self internal PT. I think I now understand why. My prostate is killing me, it's grown about 25% in size, and my whole pelvis hurts like a mother. It feels like the damn thing is bruised!

So yeah, stick with gentle massage surrounding the prostate or maybe even very gentle massage of the prostate itself...but don't do rigorous massage or pressure on the prostate itself!


Sun Mar 12, 2017 8:52 am
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Post Re: Prostatitis won't die
So I finally pulled the trigger. On 4/10 I'll be driving 4 hours each way to visit Dr. Pontari at temple. He's supposed to be one of the premier prostatitis doctors - that's his specialty. I'm not getting my hopes up too much, but at the very least it will be nice to be able to talk with somebody who is an expert in the subject.

Ever since I did that strongprostate massage last week I've been having increased pain and burning. I don't know what that means or what I should take away from it. Not sure if I bruised the prostate or re-activated some sort of infection or what, but there has to be some important information I can glean from this. In any case, I've been very slowly feeling better but ugh it's annoying.


Thu Mar 16, 2017 8:09 pm
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Post Re: Prostatitis won't die
Welp I am back from my foray to Temple University for my visit with Doctor Michel Pontari, who is generally regarded as a prostatitis expert in the industry. He is author of many prostatitis papers such as:

http://prostatitis.org/redirect.php?lin ... ontari.pdf

In any case, it was great to finally sit down and discuss prostatitis with someone who obviously knows the condition. Some takeaways from my visit:

1. Biggest shocker - he doesn't appear to believe in semen culture! I can't find it now, but I recall a while back reading a paper on the subject of normal prostate flora where the controls without prostatitis actually had more bacteria present in their semen than the prostatitis sufferers. He was talking about it and I was like "oh yeah, I remember that paper"....apparently he was a co-author so he was obviously quite familiar with the subject. In any case, he didn't care one bit that I had enterococcus in my semen as he considered that pretty normal. My positive ecoli/klebsiella urine culture from the same period last year was more concerning, though he thought that the Augmentin should have resolved that. I left urine for culture, however he said no more abxs unless something definitive came back from that. Fine with me.

2. He performed the quickest DRE I've ever had in my life, maybe 15 seconds if that. He pushed on my levator for a couple seconds and then examined my prostate for like 5 seconds. I expressed some interest in how fast it was and he said "I'm checking for some very specific things and I know exactly what I'm looking for". Ok, works for me...

3. During the course of my 2 hour visit he asked me a number of interesting questions which were out of the blue, but he was obviously getting at something:

A) He asked me if I ever took steroids. I figured this was because I'm a bodybuilder and generally look like I use steroids (I don't...anymore). I told him I did a couple cycles of dianabol about ten years ago. He expressed that often he sees CP in people with low testosterone and that even a cycle or two could make me more susceptible to it. Interestingly enough, I did have a physical done a couple years ago and my T levels, though technically normal, were at the very lowest limits of the normal range. Suspicious...in any case got bloodwork done to check for that.

B) He also wanted to check for some thyroid levels...no experience there so I left blood for that too.

C) Most interestingly, out of the blue he started talking about autoimmune disease and inflammation, to which I told him about the muscular inflammation I've been suffering from on and off for years (tested positive for scleroderma-myositis a while back). He was like "dude why didn't you tell me that"...I guess I didn't think of it. Apparently CP sufferers also tend to have an elevated autoimmune respose

D) Also asked me about diarrhea...to which I explained how I've basically had some form of diarrhea my entire life (IBS, food allergies...not really sure which). He was very interested in this and explained that the colon nervous system was intimately linked to the prostate/pelvis. I sort of already knew this, but perhaps it's one piece of the puzzle.


4. It was quite impressive to me that he nailed on all these points that I seem to suffer from without any prior knowledge (either that or he's a very effective fortune teller). His final consensus was this:

---->My "prostate" problem isn't really a prostate problem and it's a pelvic issue. Likely I am one of those people who's immune system is such that I am much more prone to inflammation in general, and now I'm experiencing it in my pelvis. Very likely the stress of the whole triggering event and/or some initial pathogen triggered this response which has gone on in this vicious cycle.

He said that typically in CP, the evolution of the pain sort of goes in this decaying graph of slowly reducing symptoms over time with lots of fits and starts, but the general trend of the flares is less and less severe. He drew sort of a hand graph of it, and I pulled out my trusty daily pain scale plot and we took a look...sure enough you can sort of make out a very similar pattern over the past 1.5 years.

He also prescribed me Tizanadine which he said was a good muscle relaxer for the pelvic floor. I've started that today...obviously I'll report back on how it goes over time.

So I come back feeling pretty good that I won't need any more abxs and that there is light at the end of the tunnel. He was very positive about my self internal stretching and said to definitely continue this. I will of course, and I also have a therawand coming this week so I can up my game a bit.

So, them's the breaks. If you're within a couple hundred miles and Philly then I recommend going to see him if you're feeling lost with your normal uros. By far the best of the five I've seen to date when it comes to CP/CPPS.


Mon Apr 10, 2017 7:38 pm
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Post Re: Prostatitis won't die
Wow 454, I so needed to read this cause I felt like I was going on that downward spiral again...that explains alot...the tragic event of doing something out of my marriage (oral), the anxiety and stress of the ordeal....plus I have really noticed that when I'm busy like out with family or the kids, I feel nothing...it also explains why you can go days or weeks without symptoms and then boom,it's come back....man, I so appreciate you sharing this with us


Mon Apr 10, 2017 9:01 pm
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Post Re: Prostatitis won't die
Thanks for the detailed report.


Tue Apr 11, 2017 8:57 am
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Post Re: Prostatitis won't die
jaynnc wrote:
Wow 454, I so needed to read this cause I felt like I was going on that downward spiral again...that explains alot...the tragic event of doing something out of my marriage (oral), the anxiety and stress of the ordeal....plus I have really noticed that when I'm busy like out with family or the kids, I feel nothing...it also explains why you can go days or weeks without symptoms and then boom,it's come back....man, I so appreciate you sharing this with us



Yeah sometimes I get toward the downward spiral during a flare-up. But I do take solace in that these flares typically last a few days or even weeks and then, at least in my case, drop back down to 1/5 or 2/5 pain levels. Good for you if you can actually go days or weeks without pain. That's huge. The longest I've ever gone is 1-2 days with minimal pain. If you can feel cured for weeks then that's a good sign that will continue to get longer and longer lengths of times without symptoms.

I believe I've recovered about 100% from the initial guilt/disgust of the whole thing. It's rolling up on two years now and that's really just not an issue anymore. Unfortunately it doesn't seem to have translated into a cure, so I certainly feel like there's a little more than just that going on for me. That paper I linked to has what I believe is a very good summary of what we know on the disease.


Tue Apr 11, 2017 1:39 pm
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Post Re: Prostatitis won't die
Glad to hear it went well with Pontari. I also found his questioning much more thorough than most others.

Have you looked into a ketogenic diet? I've been reading a lot recently about how it's really good for gut issues and systemic inflammation. I've noticed my baseline seems to stay higher since starting it.


Tue Apr 11, 2017 7:33 pm
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Post Re: Prostatitis won't die
dihard wrote:
Glad to hear it went well with Pontari. I also found his questioning much more thorough than most others.

Have you looked into a ketogenic diet? I've been reading a lot recently about how it's really good for gut issues and systemic inflammation. I've noticed my baseline seems to stay higher since starting it.


I'm not sure how effective I'd be as a bodybuilder with such a reduced carb diet. I'm also afraid that I might get too skinny, if that's a thing! My BF% is normally around 5% just on my normal diet. In any case I did eliminate dairy again this week (as well as all cereal grains)...but that's only because I ran out of milk and cereal for the week :( Over the past 25 years I've tried just about all variations of food elimination diets and basically what it comes down to is I can eat vegetables and lean meat ok, but as soon as I start adding anything else, whether it be grains, diary, fats, oils, sugars, etc...I notice digestive issues. I don't feel like eating plain chicken and carrots every meal of my life so I've just learned to live with it. It doesn't seem to cause much issue other than very mild diarrhea most of the time.


Wed Apr 12, 2017 4:12 pm
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Post Re: Prostatitis won't die
You won't get skinnier on keto as long as you eat a caloric surplus. In this video Dave Palumbo, a pretty high level coach, talks about how he puts a lot of his clients on it. http://prostatitis.org/redirect.php?lin ... RiDW5UV9Yk


Wed Apr 12, 2017 7:35 pm
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Post Re: Prostatitis won't die
Time for a much needed update. Update items:

1. I have learned through trial and error since March what helps really cause my symptoms to subside. It's not actually internal stretching that does anything...in fact I find it I *only* do stretching then I get worse. All it is for me is a simple prostate massage. It takes about 60 seconds and it's a very light rubbing more than a massage. All I do is spend about 15 seconds in each direction rubbing the prostate with my finger. It's night and day difference for me. Gets me down to a 1/5 pain most every time. Just this evening I wa at a 2/5 due to not massaging for two days. I just took a shower and massaged....virtually no pain now.

2. Recently I had given up hope of finding a magical cure for this disease as it's now been just under two years. So I went to a pain management specialist, and to my surprise he recommended a spinal stim unit. Basically one of those devices where they put an electrode against your spinal column and it helps to block the pain signal to the brain. You can do a pretty easy 5 day trial test to see if it works so I was planning on doing this relatively soon.

3. First however, I wanted to get one last culture test. The past couple urine cultures I've had have been normal (as recent as March). This time though, I requested my favorite uro do a legit intense prostate massage prior to leaving my urine so I was effectively performing a VB3 culture. I wasn't expecting anything but wanted to cross it off my list before surgery. Just got the results back last night and to my shock it came back excessive growth of e-coli! I also had a urea/mycoplasma test done on the same sample however the results were rather odd - “Media overgrown with fungus and/or bacteria. Culture has been reset". Not sure what to make of that, perhaps it has something to do with the excessive e-coli growth. Oh and my chlamydia antibody test came back positive again. That was nothing new though. Interesting that last July I also tested positive for e-coli in the midst of a painful flare for a regular urine culture. I assumed it was contamination as that was the only time I'd seen that before or since though.


So I'm in a pickle now. I think my plan is as follows:

1. Do another VB3 culture to make sure it wasn't a false contamination. If it comes back e-coli again then I'll know for sure this is legit.

2. Get another NAA chlamydia test...on the VB3 sample. I've had NAA urine tests in the past (all negative), but never post-massage. I still have this gut feeling that I was exposed to chlamydia during this encounter since other than this one event, I've only ever been with my wife since we were both 16yo...neither of us having other partners. I emailed my uro about interpreting the urea/mycoplasma results. I've been negative in the past on semen test for those.

E-coli was sensitive to Cipro, Levaquin, augmentin (all abxs I've taken before with no cure) so I'm not getting excited. It was resistant to Bactrim but sensitive to a number of cephalasporins (all injection type). Anyway, a possible piece of the puzzle and another mystery to pursue.


Sun May 28, 2017 7:51 pm
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Post Re: Prostatitis won't die
The culture for mycoplasma is not reliable at all....very hard to culture it. If you really suspect it you need to do dna test for it.
So, im confused...you tested positive for chlamydia antibodies? Doesnt that indicate an infection?
Keep us posted on results an ecoli.....thanks!!


Sun May 28, 2017 11:32 pm
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Post Re: Prostatitis won't die
[quote="freakinfrustrated"]The culture for mycoplasma is not reliable at all....very hard to culture it. If you really suspect it you need to do dna test for it.
So, im confused...you tested positive for chlamydia antibodies? Doesnt that indicate an infection?
Keep us posted on results an ecoli.....thanks!![/quote]

IDK, there is a specific labcorp test number just for mycoplasma and ureaplasma so I assume it is at least decently reliable. I will investigate it vs. a DNA test though. I have been tested twice in the past and it was negative both times, and it never responded to treatment mycoplasma and ureaplasma.

Chlamydia antibodies only indicate that at some point you were exposed to the bacteria so your body produced antibodies. It doesn't mean you currently have an infection. All my NAA urine tests for that in the past have always been neg and they are supposedly very accurate for detecting a current infection. But then again...where would I have been exposed to it? Aside from this one encounter I have only had sexual contact with my wife and she claims same for me (we started dating at 16yo in HS). My igG values are a low positive as well, only 1.2.

Will def update once I sort out the ecoli mystery.


Mon May 29, 2017 9:13 am
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Post Re: Prostatitis won't die
what a rollercoaster....let us know what round 2 of tests come back with, and what your next steps are. I might try getting tested at a different lab this time around to see if the results are duplicated.


Mon May 29, 2017 12:21 pm
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Post Re: Prostatitis won't die
So I had some convos with my uro. He talked with the lab...

1. He is very convinced there's no possibility the results are a screw-up and does not want to do another culture before treatment

2. Says the myco/urea strange results were due to the e-coli and does not advise treatment

3. Also convinced I do not have active chlamydia infection so no need to treat for that

He wants me to do a 7-day gentle abx to treat e-coli as a UTI. And guess what abx.....fosfomycin. So anyway, I'm doing that for seven days. I'm not expecting any positive result from that for my actual prostate but I do need to get rid of the bacteria outside of prostate before they will do my spinal stim evaluation procedure...so it needs to be taken care of. Naturally my biggest concern is a c-diff recurrence, even if fosfomycin has a lower risk and it's only for short duration. I'm getting my gastro lined up in case I need a quick script of dificid. My intestines have never felt normal ever since last September when I was treated for c-diff, even though I tested neg for it in November...have needed an excuse to go visit her anyway. Like sands through the hourglass....


Tue May 30, 2017 2:16 pm
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