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 [Updates] Initially tested positive for bacteria at a GP,... 
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Joined: Tue Apr 12, 2016 11:55 am
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Post Re: [Updates] Initially tested positive for bacteria at a GP
'has all anitbiotics in the world'?...lol, to receive that literally constitutes it being false. You haven't read all the literature there is, no one has. In fact, the end of prostate massages performed by doctors occurred more than 30 years ago, a perido over which at least tens of thousands of literature pieces were written on the subject and similar conditions. The point I'm making is the literature only goes so far when approached by a patient, especially since there is a plethora of technical jargon that is not comprehensible by a non-avid reader, and is not comprehensible by lots of professionals in the field. I've read numerous reports of p-massage exacerbating symptoms, and it's even in some of the literature on the Prostatitis Foundation web site. Even fibromyalgia is treated with extreme sensitivity now due to past experiences and reports of harsher techniques for diagnosing and treating that caused worsening of pain and problems. Lots of it is also undocumented. The doctor you're seeing sounds so eager to throw an antibiotic at it that there's no thorough consideration of the side effects that are actually occurring. Perhaps the discrepancy in the testing over several different tests produced an anomaly in the observable results or something that has masked the actual culprit and a more reliable, chance-worthy approach to treating.


Tue May 14, 2019 2:49 pm
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Joined: Mon Dec 31, 2018 10:24 am
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Post Re: [Updates] Initially tested positive for bacteria at a GP
presto423 wrote:
'has all anitbiotics in the world'?...lol, to receive that literally constitutes it being false. You haven't read all the literature there is, no one has. In fact, the end of prostate massages performed by doctors occurred more than 30 years ago, a perido over which at least tens of thousands of literature pieces were written on the subject and similar conditions. The point I'm making is the literature only goes so far when approached by a patient, especially since there is a plethora of technical jargon that is not comprehensible by a non-avid reader, and is not comprehensible by lots of professionals in the field. I've read numerous reports of p-massage exacerbating symptoms, and it's even in some of the literature on the Prostatitis Foundation web site. Even fibromyalgia is treated with extreme sensitivity now due to past experiences and reports of harsher techniques for diagnosing and treating that caused worsening of pain and problems. Lots of it is also undocumented. The doctor you're seeing sounds so eager to throw an antibiotic at it that there's no thorough consideration of the side effects that are actually occurring. Perhaps the discrepancy in the testing over several different tests produced an anomaly in the observable results or something that has masked the actual culprit and a more reliable, chance-worthy approach to treating.


What I meant is that his clinic is very well equipped with a large range of antibiotics, including intravenous options, not that he literally has every antibiotic in existence :lol:

The ID is very upset about the GP not doing a proper culture and stuff at the beginning before partially treating it by randomly throwing antibiotics at it too which needlessly complicated my case, I would also rather not be on antibiotics but with the main symptoms being chills and malaise it still does seem like antibiotics are my best chance at fixing this :(


Fri May 17, 2019 1:44 am
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Joined: Tue Apr 12, 2016 11:55 am
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Post Re: [Updates] Initially tested positive for bacteria at a GP
:lol: I didn't think you were saying that the doctor literally has all antibiotics in existence.

I was simply pointing out that of the vast number of antibiotics the doctor has to select from, or large number (if not vast), you've gotten to try 2 or 3 from how it sounds.

This is one of the problems with relying on an ABX happy doctor. There's no telling how much time is going to pass before another option is on the table. Hence, addressing the doctor about it is probably going to necessitate discussing the actual cause(s) of chronic fatigue and remaining on an IV drip. Those are also known to cause fatigue and unintended problems (ala MRSA and other complications or errors, etc). Sometimes fatigue and such predisposes a person to becoming less motivated to proactive action. I've certainly experienced it hugely in the past several years or so.


Sat May 18, 2019 5:33 pm
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Post Re: [Updates] Initially tested positive for bacteria at a GP
Bit of an update: I'm finishing 12 weeks of piperacillin-tazobactam and 2 weeks of azithromycin, and we are stopping all antibiotics to see what happens next. The ID doctor declined to do further prostate massages in fear of worsening the problem, so last post-massage urine test was done two weeks ago and it's still showing WBCs and really high RBCs, and "few" bacteria in the sample.

Symptoms are still all over the place, sometimes I feel gradual improvement for a few days and then it gets worse again. Last Wednesday I had a flare up and a full-on 37.6C fever. Still a low fever, I know, but it's like having a bad cold for the past 5 months and it's really killing me, and it's impossible for me to function properly.

Went to see a urologist for a second opinion, he thinks it's definitely a bacterial infection but that the ID doctor is in a better place to help manage an infection this complicated, while he is interested in checking the kidneys for a root cause of this persistent/recurrent infection.

Problem is, the ID doctor's kinda given up on my case, after 6 months of questionable progress he's starting to be a little patronizing and self-contradictory, despite the recent post-massage urine test showing inflammation + bacteria he says he's ruling out infection since antibiotics are failing, and is diagnosing me with nerve damage. I told him that there's an entire forum full of stories of antibiotic-refractory CBP, but he said he's doubtful of those stories.

He says that the nerve damage explains even the chills and malaise, and when I asked him why the same symptoms were treated once with levofloxacin, he outright shrugged and said "I don't know, but even if it is still an infection I am honestly at my wits end". I've been taking Lyrica for neuropathic pain, and it hasn't been doing anything for any of my symptoms.

I was initially hoping to repeat the tests over the next few weeks after stopping the antibiotics to see if anything's still culturable but here's the kicker: the ID doctor says that he's not going to do the prostate massages anymore because he thinks the best I can hope for is that my body "walls up" the bacteria and he's afraid of breaking those, despite claiming that I don't have an infection anymore and have nerve damage (???), and when I asked about that he just said "yes, but it is a mild infection if nothing shows up without the massage" (???). Frankly speaking I'm not sure what to do next.

I am also not sure how nerve damage could explain the low-grade fevers I get at times. I could buy nerve damage causing chronic pelvic pain, but I cannot fathom how a non-acute chronic infection could wreck my whole nervous system so badly I get such chills and malaise that once responded really well to antibiotics, but now the exact same symptoms are caused by a different problem. Moreover I have no classical symptoms of nerve damage of burning/tingling/loss of sensation. He just told me that "every body reacts differently to nerve damage" and that "an infection at the right place and time can definitely damage the nervous system like this". He also said that nerve damage of this sort is also impossible to formally diagnose and/or treat, so I really get the impression that he's trying to wash his hands off my case. :(

I also just visited a Traditional Chinese Medicine practitioner who thinks that his herbal remedies can help, but I'm not sure how I feel about alternative medicine. All I can do is try to stay strong and hope for the best. At this rate I'll have to take another semester off university, which would really suck.


Mon Jun 03, 2019 5:54 am
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Joined: Sat Dec 08, 2012 4:30 am
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Post Re: [Updates] Initially tested positive for bacteria at a GP
Hengisme, Welcome to the reality of prostate trouble. You’re frustrated, your Drs are frustrated. That’s the standard road many of us travel. Theoretically speaking, you can’t diagnose/cure/treat a condition that doesn’t exist. The symptoms and misery they cause are real to those who live with it but the variables associated with it make the Drs job almost impossible. My 1st visit with a Urologist 20 plus years ago gave me the only real answer I have ever heard that helped me. And that is there is no answer that applies to everyone. A Dr who is honest about this in the beginning is a Dr you can trust, because Drs do not like to admit they have no answer. Your problem and whatever is causing it will likely get better for no real reason. I’m not going to tell you there’s a magic cure because in my opinion none has been found, although there are numerous ways to manage symptoms. You just have to find them. I wish I could be of more help but I’ve read nothing in the past 20 years to make me believe we are any closer to figuring this out.

My life down this road started after a hernia surgery, and now I am going to be having another hernia surgery. So I can only hope and pray things do not get worse, or maybe a miracle happens and during this surgery something is corrected that helps me, but that’s wishful thinking on my part.


Mon Jun 03, 2019 11:58 am
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Post Re: [Updates] Initially tested positive for bacteria at a GP
I just went to a new urologist for a second (?) opinion. He did a CT scan to confirm I did not have kidney stones. Then he told me that I was trying too hard to treat the prostatitis and that I needed to relax.

"As long as you don't get a high fever, who cares?", he said.

This is probably the absolute most soul-crushing consultation I've ever been to. I get that my symptoms are "low-grade" and "mild" inflammation, but the suffering it causes is unreal. Can't everyone relate to how a bad cold makes you feel, fever or no? Imagine having that for 5 months non-stop. Even the strongest man would start to crumble. It is bizarre that a trained urologist can take his patients so dismissively simply from the absence of high fever.

To be honest I'm starting to feel somewhat suicidal these days. I'm looking at going for therapy but sometimes I really just want all this suffering to end. If there's really no cure to this condition I'm not sure I want to live this crippled life.

Madcap wrote:
Hengisme, Welcome to the reality of prostate trouble. You’re frustrated, your Drs are frustrated. That’s the standard road many of us travel. Theoretically speaking, you can’t diagnose/cure/treat a condition that doesn’t exist. The symptoms and misery they cause are real to those who live with it but the variables associated with it make the Drs job almost impossible. My 1st visit with a Urologist 20 plus years ago gave me the only real answer I have ever heard that helped me. And that is there is no answer that applies to everyone. A Dr who is honest about this in the beginning is a Dr you can trust, because Drs do not like to admit they have no answer. Your problem and whatever is causing it will likely get better for no real reason. I’m not going to tell you there’s a magic cure because in my opinion none has been found, although there are numerous ways to manage symptoms. You just have to find them. I wish I could be of more help but I’ve read nothing in the past 20 years to make me believe we are any closer to figuring this out.


Hi madcap, I'm not sure what you mean when you say "a condition that doesn't exist".

In my case I've got two MRIs and a boatload of post-massage urine tests that confirms inflammation. Bacteria frequently shows up in the urine microscopy too, although the cultures are negative presumably because of prior antibiotic use.


Thu Jun 06, 2019 8:44 am
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Joined: Tue Apr 12, 2016 11:55 am
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Post Re: [Updates] Initially tested positive for bacteria at a GP
You aren't really suicidal, you're painicidal. You want the pain to end, not your life. Perhaps the doctor was being facetious by saying what he said. If you're trying too hard to treat prostatitis, you are likely missing something that would really solve it, or at least stop the main problems that it entails. It's similar to math problem or writing a paper; too much focus on the problem and thinking it works a certain way or few ways,.too much delving into the subject with the same perspective...leading to no actual solution or finishing the paper. I've suffered with continuous pain in my pelvis / groin / perineum for the past several years. I don't have the means to get multiple, extensive tests done. Apparently you do. Stop letting a healthy doctor give you extreme depression and despair, and fight this condition with your mind and spirit. It's not going to advise you to kill yourself. It may even reveal a solution. My PCP said it was all in my head and I'm too young to get prostatitis. You're starting to crash the car when there isn't anything to run into...now get re-motivated and seek questions and answers, and don't stop short of requesting further help from these lazy, skeet-shooting doctors.


Thu Jun 06, 2019 12:50 pm
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Post Re: [Updates] Initially tested positive for bacteria at a GP
hengisme3 wrote:


Hi madcap, I'm not sure what you mean when you say "a condition that doesn't exist".

In my case I've got two MRIs and a boatload of post-massage urine tests that confirms inflammation. Bacteria frequently shows up in the urine microscopy too, although the cultures are negative presumably because of prior antibiotic use.[/quote]

It’s fairly simple. Take a moment to think of the time you’ve wasted, the money wasted, the tests you’ve taken over and over. Exactly what did they tell you? The sad answer is nothing, because you still have the same problem. You see there isn’t a single condition that describes what you are experiencing. You can take the results of those tests to all the Drs you can find and all you will receive is the same treatments you’ve been receiving. The reason being there is no single condition, and no definitive treatment. One guy with your test results can be treated successfully in a reasonable amount of time, but the next guy won’t respond to anything. Because the symptoms and test results do not point to one treatment or cause.

Trust me I get the frustration, but you have to face the reality that as long as you have a prostate the risk of problems will always be quietly waiting to surface. Women have unique problems men don’t have, and this is a mans version of their problems.

Diabetics are not cured, they learn to manage their condition. Arthritis patients are not cured, they learn to manage it. Psoriasis patients are not cured etc etc. There are many medical conditions that fall under that umbrella, and Prostatitis or CPPS or whatever name you want to call it can be the same for many men. I’ve had long periods of time when I am perfectly fine, but for no reason whatsoever I wake up back in the same hell.

You have to figure out how to manage it physically and more importantly mentally to get past it. The chances are in your favor you will get better, but until that happens you have to learn to live with it. Might sound harsh but I don’t intend it that way. I just understand where you are right now and what it can do to your life if you let it. You can’t allow it to derail your life.


Thu Jun 06, 2019 2:17 pm
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Post Re: [Updates] Initially tested positive for bacteria at a GP
Well, another update here:

I started seeing another urologist (since the previous guy said it didn't matter as long as I didn't get high fevers...) who wanted to do weekly prostate massages and also test the post-massage urine weekly to monitor how things go off antibiotics.

First test came back with 20+ WBC (it was at 0 most of the time during antibiotics, although it would randomly spike up even during treatment) and given the symptoms (chills, malaise, occasional low-grade fevers and body-aches when it flares) and history the urologist was sure that I had an infection in the prostate.

But he also felt that I've already tried antibiotics to an almost maximum extent, and wanted me to try stopping them all for a good while to see what happens. He said that prostatitis is frequently like this, and even with appropriate antibiotics that the bacteria is susceptible to, there's little guarantee that it works and he thinks it's because of the hundreds of thousands of clogged acini. He thought it might be okay to continue giving the Traditional Chinese Medicine practitioner a shot.

He also gave me a supplement called Pomi-T which is normally used for prostate cancer. He said it might have anti-inflammatory and anti-oxidative properties.

The TCM doctor said that herbal treatments can be really helpful for chronic conditions and that he's going to give me anti-inflammatory herbs. (whatever those are... you can't really Google those since TCM theory is super different and energy-based stuff)

Over the next 3 weeks we repeated the same tests and the WBC count went from 20 to 15 to 10 to 5, although the RBC count is in the hundreds. I feel like this could mean that the infection is continuing to damage the prostate despite the herbs lowering the inflammation, but the uro said it's probably just from the massage.

Something seem to be helping lower the inflammation BUT none of the symptoms have improved so far. I still get moderate suprapubic pain and feel like absolute .... with the fatigue and the fever-like symptoms and life's still in the shitters. Most likely I'm taking a second semester off uni and every day is a huge struggle. Really struggling to not lose hope and hopefully I'll get better eventually...

Would really appreciate any insight from you guys too


Sun Jul 07, 2019 10:51 am
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