My story any suggestions
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Author:  kp684 [ Mon Sep 10, 2018 9:37 pm ]
Post subject:  My story any suggestions

So I have turned to the internet for help. Medicine is failing me.

My story so far:

It all came on over the course of a few days. Felt like a urinary tract infection but no burning. Just got more difficult to go. Got to the point where I felt like I couldn't go without a ton of effort and it hurt "inside" like right below the navel and above my junk. Also it felt like I was using all my ab muscles to urinate. What little was coming out was not a lot. I had not had any problems urinating up until this point. Went to a walk in clinic and the doc said it sounded like prostatitis. But since I had a new woman in my life who lets say was not the most honest. He suspected it could be a STD. Asked if I wanted a test and since I had been with her about a month I didn't think anything of it and said no because "he would treat me the same" anyways. Got a shot of rocheprin and some doxy for ten days. Started feeling much better things opened up I thought I was going to be ok.

I was not

I ended up going to the ER 5 days later because all the symptoms returned. Urgency, feeling of inability to go pressure inside but no burning. Was given 2 weeks worth of levaquin and a referral to a urologist. Made it to the urologist. Levaquin had made me feel about 50 percent better but not near as good as the first few days of the initial drugs. Fact... Girl decided she thought "I" might give her something and broke up with me. Urologist spent 5 minutes with me and said its prostatitis stop levaquin and take tri? Something a low dose one a day pill. I actually felt somewhat better but a week and a half later all symptoms returned. I called office they didn't return my phone call for 5 hours at which point I was already at the urgent care again. They thought bactrim would be appropriate and the urologists nurse agreed. At this point it had been a month.

A little backstory... I had something similar happen 7 years ago and went through the mill of drugs doctors etc. And finally it seems augmentin cured me on a 30 day dose. This was very much in the back of my mind.

The bactrim did not seem to help maybe improving me 40%. Still having the feeling of using muscles I have never have used before to pee still having urgency. Made 2 different urologist appoints for 2nd opinions at this point. Folks. I'm a type 1 diabetic and weird stuff happens to me. I take care of myself. However leading up to this I had been drinking a lot and basically eating whatever yet keeping my sugars in check. My last a1c was a 6. 9.

As the bactrim didn't work I called this urologist I had been seeing because I couldn't get into the new urologists for 2 to 3 weeks, they got me in to see him and he prescribed me keflex once a day 250 mg. This seemed to initially open me up more but didn't do the job completely. I called him after a week of still suffering and he recommended we do a scope. I refused at this point. Having come on so suddenly and having had this happen once in my life before I felt it was a bacterial thing. So I went to my primary doctor for advice on this. He threw 2 weeks of Cipro 250mg 2xs a day at me and said go to the urologist affiliated with his group. The Cipro got me about 50% better but I started having side effects too. But made it to the 2nd urologist who wasn't much help. He talked to me for about 5 mins longer. Said get off the drugs and come back in a month to see what we are dealing with. I agreed. He also had me do an STD test which came back clear. He did however say there was a small amount of blood in my urine. After about 5 days off the drugs and symptoms returning I called the 2nd urologist and could not get a sooner appointment. My 3rd urologist which is at a major teaching medical hospital was still a few weeks away so I bugged out and went back to the clinic where this all started at and luckily the same doctor was working that day and I told him all this. He suggested that maybe if I had had an STD and since the rocheprin and other drug seemed to help maybe I got reinfected and that's why I was till having issues. Got the shot again and this time got a Z-pack and folks I was a new man for about 5 days. Almost felt normal. Almost was better could basically pee normal not straining the works. But it started coming back again. At this point I didn't know what to do. Called my doctor he said he can't help. So I faked a sinus infection and cause I have allergies and got augmentin for ten days. This seemed to be maintaining the level I was at. Not terrible but not improving. At this point the major hospital called and somehow I was able to see them 4 days into the augmentin. I was still peeing pretty good. When I got to my appointment he checked my prostate said it felt fine and since I completely emptied my bladder said finish the augmentin and if its not 100 % see him in 3 weeks.

Well I finished the augmentin and was feeling maybe 50% still. Not as good as when I got the shot and Z-pack. My balls started hurting as well at this point which was new and I freaked out and went to the hospital again. Told an ER doc all this and he prescribed me 5 days worth of keflex 2 xs a day until I was seeing the 1st urologist again. I had called them during all this and agreed to the scope. Made it to that appointment still straining to pee but not as bad as initially and well everything looked normal to him. He did give me more Flomax which I had to stop taking due to weird erections? My follow up with the 2nd urologist is in 2 days and I dk what to do.

Current symptoms are:
Still struggling to pee standing. If I relax I can get a weak stream (the stream was basically normal on the STD cocktail). I can pee easily sitting down but not with force
I am now constipated as all heck and using miralax and sometimes a motility laxative to get things going if I don't go for a day or so. I was very regular before this
My anxiety and stress are through the roof
Not sleeping well due to this
I have not taken an antibiotic in a few days and things are not regressing as fast but starting to get that golfball feeling again

Completely lost. I know this is a lot and long winded... I typed this all up very fast because I am desperate and want this resolved.

Its been 3 months going on 4 and I peed very regularly if not too much prior to all this due to some ying yanging blood sugars.

Things do not feel normal

I have bought all the supplements suggested on this site and am taking a lot of anti anxiety meds.... Small dose Xanax during the day and clonazapam at night to get what little sleep I can but they don't seem to be working like they used too. No real pain

I don't know what to do

Input please

I don't understand how I bnasically felt better after a shot and then all these other antibiotics don't work.

Thank you for reading.

I posted this on cpps forum hence the supplements remark
Still struggling an additionla month and a half all antibiotics and am supposedly getting the labcorp semen culture figured out this week

Your thoughts are appreciated

Author:  racebannon [ Mon Sep 10, 2018 11:00 pm ]
Post subject:  Re: My story any suggestions

sorry you are suffering. So weird that while taking antibiotics the symptoms ease, but it is not a cure and symptoms explanation other than it provides some sort of anti inflammatory relief.?

By the way did the docs check your prostate?

You could ask for something like Flomax...test and see if it helps. In my opinion, you've taken enough antibiotics and in the long run they do harm to the body.

One thing that helped me for a while...low dose of anti anxiety med like Valium or Ativan....seemed to help as a muscle relaxant. Docs are scared to prescribe sometimes because of addictive properties but I never had an issue stopping as long as you don't abuse it.

In the meantime forget the women and focus on yourself.

Author:  kp684 [ Tue Sep 11, 2018 1:04 am ]
Post subject:  Re: My story any suggestions

Prostate checked by 3 different docs....2 said it felt a little "inflamed" but nothing significant...did flow max for a month helped at first then started getting weird erections in morning.....didnt like that.

Already on valium 3xs a day....


I felt almost 100 percent better for 7 day stretches on a rochephrin shot plus doxy/zpack

Author:  Madcap [ Tue Sep 11, 2018 11:10 am ]
Post subject:  Re: My story any suggestions

I can’t say what is causing the problem or why, but I will offer my opinion on some things I personally think you are doing wrong. To start with, you’re seeing too many Drs. Next, you’re taking too many different antibiotics, none for a long enough period of time to cure you. Next, you’re looking to Urologists for treatment. I’ve mentioned this numerous times here but I’ll say it again. Urologists are specialists, they exist to perform tests your GP can’t do. Specialists are not who you see if you are not getting a test done that only they provide. A good GP acts as a patients caregiver, they are responsible for their patients health needs. If you go to one who immediately sends you off to a specialist for treatment you need to find a better GP.

So this is my opinion, stop running from one ER, Urgent Care, and multiple Urologists to another and do some research in the area you live on GPs or Doctors who are listed as family Doctors. Ask around, if you know a nurse ask him or her for opinions on Drs they work with. You find a good GP and allow him or her to treat you. If you need a test they can’t do they will send you to a Urologist for it, but a good Family Dr will not immediately send you off to a specialist without exhausting their own treatment options.

My first bout of prostatitis was in the 1990s, I’ve had more flare up than I can count, going through another one now. Do you know how many Drs I have seen in that 22 year period? I’ve seen 3, 2 family Drs and 1 Urologist. The only reason I’ve seen 2 family Drs was I switched to one easier to see. I have not seen my Urologist in 18 years, because there is no reason to see him.

So that’s my opinion. Any Prostate related issue takes time to treat, it takes patience on the part of both Dr and patient. I truly wish you the best. Trust me it does usually get better. It might cause you a living hell when it’s around, but it won’t be around forever.

Author:  kp684 [ Wed Sep 12, 2018 12:44 am ]
Post subject:  Re: My story any suggestions

yes i have found what seems to be a good new primary care doctor....he wanted to start me on 2 months of augmentin. I wanted to wait to see if symptoms got worse and i guess over the last month since being off antibiotics there have been good days and bad. HE agreed to do semen testing but for whatever reason has not gotten back to me about how to go about doing this. I gave him the labcorb code found on this forum and he said it was an easy test but hasnt told me when or how to proceed.

Ive seena pelvic floor therapist and i am def clenching alot down there. everywhere. But...with that biggest concern now. I dont feel my bladder anymore. Like i only get the urge to urinate like through my penis? Does this make sense to anyone? has anyone had this happen with prostate issues?

Im really very afraid of this and what it could mean.

Author:  kp684 [ Thu Sep 13, 2018 7:46 pm ]
Post subject:  Re: My story any suggestions

I just sent off culture of semen with labcorp code 18311
But I just found the code for 086844. Is this going to make a huge difference?

Author:  kp684 [ Sat Sep 15, 2018 1:10 pm ]
Post subject:  Re: My story any suggestions

? Anyone?

Author:  presto423 [ Sun Sep 16, 2018 12:58 pm ]
Post subject:  Re: My story any suggestions

I don't know about those codes. Doesn't it say on the site?

Author:  AC1972 [ Thu Sep 20, 2018 3:52 am ]
Post subject:  Re: My story any suggestions

has anyone cultured your prostate fluid? i think a proper diagnosis is the place to start and getting your prostate fluid examined for bacteria is key.

Author:  kp684 [ Sun Sep 30, 2018 10:11 pm ]
Post subject:  Re: My story any suggestions

Nobody has cultured my prostate fluid. Got results of semen test back. Nothing grew. I'm concerned that my office had never done one before. So maybe something got messed up. Doing the Texas based DNA thing this week. Doc said it sounded interesting. I'm having a hard time with this.

Author:  presto423 [ Sun Oct 07, 2018 12:25 pm ]
Post subject:  Re: My story any suggestions

How's the Texas DNA test going?

Author:  kp684 [ Sun Oct 07, 2018 4:45 pm ]
Post subject:  Re: My story any suggestions

Pcr on urine and semen came back negative....waiting on the deeper dig. Not looking good. Idk what this could be....kinda scared my diabetes caught up to me. Like it happened basically overnight I just dont get it. I wish there was sime light at thr end of a tunnel.

Still feeling urge to urinate in my junk ....maybe I have overactive bladder or something. Im so lost. None of the doctors im seeing have a damn clue.

Author:  presto423 [ Mon Oct 08, 2018 10:57 am ]
Post subject:  Re: My story any suggestions

I think things are in a paradigm change, or a shift in more than one paradigm. Certain things stay the same or mostly the same, and lots of other things change and perspectives need to change too, or are changing. It seems modern medicine is catching up with its own know-it-all, formulaic approach to health. I can read dozens of articles on one type of illness, vitamin, or diet, and gather lots of differing/opposing views and information. It makes it nigh impossible to confirm what's right to do sometimes without trying it first. Like the allicin thing. One excerpt from Wikipedia states it is released on tissue damage of the garlic (e.g., cutting, dicing, crushing it), but an article I read in which they studied its bioavailability with meals says it happens (the release of allicin) during gastrointestinal inhibiting action. It's not that I think it should be one or the other, it's that I don't know how to think about it because I don't understand enough. The best I'm able to do is hypothesize. I think the best doctors are able to do is about the same quite often, yet they're slated to have more knowledge and expertise.

kp, perhaps you have bacteria in a different place, your gut, for instance. or perhaps your estimation of diabetes is correct somehow. It's known to cause inflammation. Or perhaps you're more susceptible to the bacteria that reside in you than you know. I was taking acidophilus (probiotic) pills for a time and they seemed to help get rid of acid reflux I was having, and I got gut pains less often, but when it didn't work I wasn't sure whether to think I had something worse or that the acidophilus bacteria was not doing what it functions for, or what? I stopped it to see what would happen, and slowly the acid reflux came back to how it was before starting the pills. Probiotics, to me, are similar to headache meds and cough syrup. It's why they have to be repeatedly consumed. Several of the species known to cause prostatitis and similar conditions are said to be naturally occurring bacteria in the human gut. So, what's the problem? where is the dysfunction coming from if it is a naturally occurring gut bacteria causing issues?

Author:  Madcap [ Mon Oct 08, 2018 1:12 pm ]
Post subject:  Re: My story any suggestions

Not that I want to jinx it, but since I started taking a probiotic again I am 80 percent better and feel like I might be close to putting this latest flare to sleep for awhile. I only take the probiotic every other day as for me taking them daily has always caused more problems. A few times per week works better in my case. Also at the same time I switched brands of liquid tumeric extract. Started taking it alongside the pumpkin seed oil and that’s been another area where I think it’s helping.

Author:  kp684 [ Tue Oct 16, 2018 8:59 pm ]
Post subject:  Re: My story any suggestions

forgot to post this

can anyone help me interpret these results. doc asaid he wont give me any antibiotics but results were as follws

pcr urine negative for everything

comprehensive dna sequencing results {urine}

e coli 28%

staphyloccus epidermidis 18%

pseudomonas fluorescens 11%

massilia pnisoli 7%

bradyrhizobium japonicum 5%

Corynebacterium tuberculostearicum 2%

Semen sample

ALl negative on pcr

on comprehensive dna sequencing

Corynebacterium tuberculostearicum 45%

staphyloccus epidermidis 9%

acinetorbacter Iwoffii 7%

finegoida magna 6%

Fenollaria massilliensis 3%

Anaerococcus octavius 2%

Corynebacterium glucuronolyticum 2%

E cloi 2%

Corynebacterium minutissimum 2%

peptoniphilus harei 2%

Staphylococcus hominis 2%

no fungal found in either

my doctor stated this means nothing and antibiotics are not merited..

i dont know what to do.....booked an appointment with cleveland urology going there first week of november.

Cute story....went to ku med cause i live there 4 times....original doctor didnt prescribe any antibiotics....gave me flomax wich did nothing....3rd time i saw him said he didnt know what to do....i asked him like its ku med you gotta do something. he refers me to this other doctor who recomends a urodynamics test. i go through with it.....throws catheters at me and says do this 3 times a day. when i have zero retention. i dont understand....old pc said thats crazy dont cath go to clevland pc hasnt seen test results yet.

im stuck.....nobody is willing to help me or see this through......

one thing to point out...for 48 hours after urodynamics i felt more "open" was peeing a little better and felt more comfortable.....but it was short lived

Author:  presto423 [ Wed Oct 17, 2018 10:58 am ]
Post subject:  Re: My story any suggestions

The different docs are almost like cult mediators, or voodoo priests. Take one bone of raven, stir ashes of red maple tree leaves in the special broth (3 1/2 oz. boiled plantain juice mixed with verruca salt and a slurry of hippo dung fresh from the morning ground). Drink slowly and deliberately while mumbling in ancient dialect.

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