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 Toronto Sufferers 
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Ilia told me that my Prostate was not very bloggy and may be majority of my symptoms are muscular and he asked me to see him after 2 months in july

I have eaten doxycyline for 23 days for no improvement in symptoms at all

I am not sure what to do now.

Any suggestions as Ilia was my last hope :-(


Fri Jun 01, 2018 12:48 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
ankush0687 wrote:
Ilia told me that my Prostate was not very bloggy and may be majority of my symptoms are muscular and he asked me to see him after 2 months in july

I have eaten doxycyline for 23 days for no improvement in symptoms at all

I am not sure what to do now.

Any suggestions as Ilia was my last hope :-(


If your symptoms are muscular then physical theraphy treatment will help. Jessica Nargi is the one who has knowledge in dealing this type of condition. Google her name to get more info.


Sat Jun 02, 2018 4:29 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Thanks for the reply bro

Now I have eaten DOXI for 25 days and Azithro for 22 days and no improvement till now..

ILIA asked me to take Azithro for 15 days and if it does not benefit then go to a Phsiotherapist

Did Ilia ask you to go see a Physiotherapist

I am very very confused as I was really hoping for Antibiotics to work but :-(

Why did the results say Mycoplasma and now Ilia is asking me to go see a Phsiotherapist

Who will answer this question if it is muscular or infection

There is another antibiotic named moxifloxacin, has anyone tried that

Regards,
Ankush


Tue Jun 26, 2018 5:17 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
Yes...i tried moxi for 10 days...made my achilles very sore and i stopped. I have done 2 dna tests since and no myco so i guessed it worked. BUT my symptoms persist...
Ilia has never suggested physio for me.


Tue Jun 26, 2018 6:19 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
I just want to clarify this, is it physiotherapy or physical therapy that Ilia recommended you?
The reason why Ilia recommended it is because he probably thinks your symptoms are caused by both bacterial and non bacterial causes. This is true to some CP\CPPS sufferers. Every time he do a prostate massage he checks the pelvic muscle floor if it is tight due to pelvic muscle floor dysfunction, a PT can help with that issue. Another thing is after a long period of infection, it can leave a nerve damage too which again PT can help somehow. My infection lasted for less than a year but it still left me with a mild nerve damage. I'm 90-95% symptom free now. The remaining 5% is the nerve damage which causes a mild discomfort on my perineum and penis after masturbation but its goes away after few hours. He also recommended me to visit a PT but I haven't done it yet.


Thu Jun 28, 2018 2:42 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Hi Guys,

@Yakuh, Ilia asked me to go to Physiotherapy. He said that my Prostate was not boggy and when he pressed it there was no pain in Prostate.

He then said that "antibiotics will clear the infection but I think the majority of your symptoms are caused by muscles"

Now I have eaten antibiotics for 52 days and honestly my pain has not reduced a lot.

Infact my urethra is a bit irritated as it sometimes burns if I go to pee after a long time e.g. after 5 hours

Sometimes I also notice a very stick but clear discharge from tip of urethra

Did antibiotics irritate your bladder? Did it hurt when Ilia used to press your prostate? Have you ever got a clear discharge?

Regards,
Ankush


Wed Jul 04, 2018 2:51 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
Yes, there was some pain when he pressed prostate....i also had clear discharge that im pretty sure was prostate fluid. Sometimes in the morning and usually when i was avoiding ejaculation. I no longer avoid ejaculation and i dont get clear discharge anymore.


Wed Jul 04, 2018 10:19 pm
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Joined: Fri Jul 06, 2018 3:23 am
Posts: 5
Post Re: Toronto Sufferers
You said the majority of your symptoms are caused by muscles so I think you should visit a good physiotherapist. Pelvic physiotherapy provides relief from pain and improves urine control. You can find good pelvic physiotherapy clinics in Toronto.

ADMIN NOTE: As I've posted a couple of times, for the time being, I am not allowed to post external links. I'm not saying that your link was bad, but rather that the board of the forum has told me "No External Links!" If you want to send them via a PM, go for it. Just post something like... "for further info, PM me!" I don't make the rules, I just enforce them! In no way is this a note meant to be anything but informational.
Thanks!

viewtopic.php?f=2&t=2412


Tue Jul 10, 2018 1:46 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Hi Guys,

Its been long that anyone posted here.. as previously discussed I have taken 1 month of doxi and 1 month of azithromycin without any benefit....

I am confused whether I should keep visiting Ilia as last time i saw him he said that 'Take ezithromycin for 15 days and if you get better take for 15 more days else go see a physiotherapist'

Although I feel muscle pain all the time and I saw a physiterist who said I have pain in Pubic Symphasis but sometime I feel that there is slight burning in my penis, it could be the same muscle pain and I am getting confused

Has anyone got any luck with moxifloxacin

Thanks and regards


Thu Aug 23, 2018 11:54 am
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Joined: Wed Oct 24, 2018 6:46 pm
Posts: 31
Post Re: Toronto Sufferers
Hi all:

I'm new to the forum, but am also a fellow (God forbid 19+ year) 49-yr-old sufferer in Toronto.

Many years ago, I visited Dr. Curtis Nickel in Kingston (the supposed guru in Canada), but his assistant was unable to get a prostatic fluid sample, and at that time they were in the midst of doing Cipro ABX studies (and I wasn't a good candidate, cause I had already been on Cipro w/o permanent success), and I was not impressed by the fact that Curtis spent only a few minutes with me after driving 2 hrs to get there and waiting to see him. Today, his clinic boasts an 80% cure rate, but I think this is dubious.

Recently, I tried Ilia Kaploun at the MSH Koffler Centre (tad cheaper than his private clinic but takes longer to get in). He's an ok guy once you get to know him, and genuinely wants to help. After spending $500 or so on the tests/ultrasounds, they detected calcification (stones) in the prostate and 2 common bacteria (I don't recall their names) and then 3 months of occasional prostate massage (massage, no, it's more like complete drainage and hurts) and several courses of multiple ABXs and a few supplements to improve penetration/efficacy later, and I was no better off than when I started (despite seeing a reduction in white puss cells in my prostatic fluid over that time). In fact, my condition MAY have gotten worse as a result of this arduous process. I was off work for 9mos (it took 3 mos just to get an appt w Illya - they try to turn you away once you've seen a rookie uro at MSH but I persisted), 3 mos of painful but bearable treatments, and 3 mos to recover. Came back to work for a few mos and now faced with needing to take a longer leave. Like others have said, Ilia recognizes that prostatitis may be caused by an infection, or by sore pelvic muscles near the prostate (albeit I speculate the reason you have sore pelvic muscles is because your prostate is infected and sits right in amongst them). Tried internal PT once but found they don't go anywhere near the prostate area where it hurts.

I've tried every supplement out there, broccoli water treatment, yada yada yada and nothing works. The only way I was able to get by for many years was extra strength enteric coated 650mg ASA (you can only get 325mg pills nowadays) a few times per day as needed to take the edge off, and sitting on an air-filled donut cushion. Sadly, that no longer works, and I went on Tylenol, then tried CBD oil (worked for several months). Now I'm considering regular use of Ultracet (occasional use doesn't help much).

I've heard it all when it comes to potential causes:

1) TMS - it's all in your mind, and caused by stress due to unconsious feelings of inferiority, etc. [No doubt stress makes this condition much worse, but not sure it is the root cause.]

2) OCD - I have severe OCD (fear of peeing/defecating in my pants or on furniture due to the pain in the perenium area; excessive hand-washing). Many CPPS/prostatitis sufferers have associated anxiety disorders (OCD, PTSD, IBS, etc.) that c/b the cause of their prolonged pain, long after the initial injury or infection has healed. [No doubt OCD makes the condition much worse and vice versa, so considering counselling for OCD. I'm able to better manage the OCD when I can get the pain level of prostatitis down to a bearable level.]

3) It's a bacterial infection [No doubt mine all started with a UTI, and I suspect the ABXs just aren't able to penetrate and/or get at all of these microgerms. Unclear whether calcification is a mere remnant of such recurring infections or helps to trap/protect this bacteria. The bacteria may in fact be viral or fungal (for which standard ABXs won't kill it). [I still believe this is the most likely answer, and that direct injections (preferably non-anal) are best, but many have mixed results from getting them and unclear whether it's safe. I sure don't want to go all the way to Dr. Song in China, and there are only a handful of less advanced uros doing injections in the US, and again travel time and cost is a big factor. Dr. Bahn in Cali does injections through the anal cavity but apparently Dr. Song avoids the anal cavity and associated risk of reinfection.]

4) It's a pelvic floor dysfunction [again, sure your pelvic muscles near the prosate are going to hurt... heck even others casue we all tend to unconciously "hold/protect" ourselves down there sometimes, but surely an infected prostate amidst said muscles may be the root cause. I tried Standford-Wise inspired exercise for a few days and gave up.]

5) It's an allergic reaction to gluten or something else [seems kinds dubious to me, but some have found success in avoiding wheat, etc. Personally, I have enough trouble avoiding alcohol, spicy food, and caffeine, so I really don't want to avoid wheat.]

6) It's caused by excessive uric acid [This shows some promise... I have had uric acid cause kidney stones and gout, but was able to control it by limiting salt intake. Nevertheless, uric acid c/b the cause of aggravation to my bladder/prostate, so I'm going to try a uric acid cleansing suppplement. Clinical trials of reducing uric acid had mixed results, so I am not optimistic.]

7) I'm sure there are a few other possible casues I've missed lol.


My condition has improved over the years a bit, but once stress hits (death in the family, etc.) I'm much worse. I used to mostly get pain after prolonged sitting, but now it's more constant pain. It sure w/b nice if the medical community would spend the research dollars to at least figure out what casues this damn disease let alone how to cure it. They say 5-10% of the male population suffers from this, or 3million American men, but that seems grossly exaggerated to me. Obviously the odds of having CPPS/prostatitis and another anxiety disorder is even more remote. I know of only one other case in Toronto of a fellow prostatitis/CPPS sufferer who also has identical OCD fears as mine. Someday, somebody is going to stumble on the cause and a cure; I just hope it's before I turn 90.


Sat Oct 27, 2018 6:12 pm
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Rocky007 wrote:
Hi all:

I'm new to the forum, but am also a fellow (God forbid 19+ year) 49-yr-old sufferer in Toronto.

Many years ago, I visited Dr. Curtis Nickel in Kingston (the supposed guru in Canada), but his assistant was unable to get a prostatic fluid sample, and at that time they were in the midst of doing Cipro ABX studies (and I wasn't a good candidate, cause I had already been on Cipro w/o permanent success), and I was not impressed by the fact that Curtis spent only a few minutes with me after driving 2 hrs to get there and waiting to see him. Today, his clinic boasts an 80% cure rate, but I think this is dubious.

Recently, I tried Ilia Kaploun at the MSH Koffler Centre (tad cheaper than his private clinic but takes longer to get in). He's an ok guy once you get to know him, and genuinely wants to help. After spending $500 or so on the tests/ultrasounds, they detected calcification (stones) in the prostate and 2 common bacteria (I don't recall their names) and then 3 months of occasional prostate massage (massage, no, it's more like complete drainage and hurts) and several courses of multiple ABXs and a few supplements to improve penetration/efficacy later, and I was no better off than when I started (despite seeing a reduction in white puss cells in my prostatic fluid over that time). In fact, my condition MAY have gotten worse as a result of this arduous process. I was off work for 9mos (it took 3 mos just to get an appt w Illya - they try to turn you away once you've seen a rookie uro at MSH but I persisted), 3 mos of painful but bearable treatments, and 3 mos to recover. Came back to work for a few mos and now faced with needing to take a longer leave. Like others have said, Ilia recognizes that prostatitis may be caused by an infection, or by sore pelvic muscles near the prostate (albeit I speculate the reason you have sore pelvic muscles is because your prostate is infected and sits right in amongst them). Tried internal PT once but found they don't go anywhere near the prostate area where it hurts.

I've tried every supplement out there, broccoli water treatment, yada yada yada and nothing works. The only way I was able to get by for many years was extra strength enteric coated 650mg ASA (you can only get 325mg pills nowadays) a few times per day as needed to take the edge off, and sitting on an air-filled donut cushion. Sadly, that no longer works, and I went on Tylenol, then tried CBD oil (worked for several months). Now I'm considering regular use of Ultracet (occasional use doesn't help much).

I've heard it all when it comes to potential causes:

1) TMS - it's all in your mind, and caused by stress due to unconsious feelings of inferiority, etc. [No doubt stress makes this condition much worse, but not sure it is the root cause.]

2) OCD - I have severe OCD (fear of peeing/defecating in my pants or on furniture due to the pain in the perenium area; excessive hand-washing). Many CPPS/prostatitis sufferers have associated anxiety disorders (OCD, PTSD, IBS, etc.) that c/b the cause of their prolonged pain, long after the initial injury or infection has healed. [No doubt OCD makes the condition much worse and vice versa, so considering counselling for OCD. I'm able to better manage the OCD when I can get the pain level of prostatitis down to a bearable level.]

3) It's a bacterial infection [No doubt mine all started with a UTI, and I suspect the ABXs just aren't able to penetrate and/or get at all of these microgerms. Unclear whether calcification is a mere remnant of such recurring infections or helps to trap/protect this bacteria. The bacteria may in fact be viral or fungal (for which standard ABXs won't kill it). [I still believe this is the most likely answer, and that direct injections (preferably non-anal) are best, but many have mixed results from getting them and unclear whether it's safe. I sure don't want to go all the way to Dr. Song in China, and there are only a handful of less advanced uros doing injections in the US, and again travel time and cost is a big factor. Dr. Bahn in Cali does injections through the anal cavity but apparently Dr. Song avoids the anal cavity and associated risk of reinfection.]

4) It's a pelvic floor dysfunction [again, sure your pelvic muscles near the prosate are going to hurt... heck even others casue we all tend to unconciously "hold/protect" ourselves down there sometimes, but surely an infected prostate amidst said muscles may be the root cause. I tried Standford-Wise inspired exercise for a few days and gave up.]

5) It's an allergic reaction to gluten or something else [seems kinds dubious to me, but some have found success in avoiding wheat, etc. Personally, I have enough trouble avoiding alcohol, spicy food, and caffeine, so I really don't want to avoid wheat.]

6) It's caused by excessive uric acid [This shows some promise... I have had uric acid cause kidney stones and gout, but was able to control it by limiting salt intake. Nevertheless, uric acid c/b the cause of aggravation to my bladder/prostate, so I'm going to try a uric acid cleansing suppplement. Clinical trials of reducing uric acid had mixed results, so I am not optimistic.]

7) I'm sure there are a few other possible casues I've missed lol.


My condition has improved over the years a bit, but once stress hits (death in the family, etc.) I'm much worse. I used to mostly get pain after prolonged sitting, but now it's more constant pain. It sure w/b nice if the medical community would spend the research dollars to at least figure out what casues this damn disease let alone how to cure it. They say 5-10% of the male population suffers from this, or 3million American men, but that seems grossly exaggerated to me. Obviously the odds of having CPPS/prostatitis and another anxiety disorder is even more remote. I know of only one other case in Toronto of a fellow prostatitis/CPPS sufferer who also has identical OCD fears as mine. Someday, somebody is going to stumble on the cause and a cure; I just hope it's before I turn 90.



Hi Rocky,

Thanks for sharing your story and most of us are in the same situation and have made compromises with our lives and the pain. Honestly I have forgotten how life was without pain. I have also consulted around 5 Urologist who all said there is no pain in my prostate and when I saw Ilia he said that my prostate is not at all boggy and any one who has done a DRE exam always said there is no pain in my prostate and its just the muscles around them.

When you get the DRE done and when your prostate is pressed, does it hurt or its like the normal pain that you always have ?

In my case when they press the prostate, it does not hurt at all but when they press the muscles around the prostate or infact muscles far away from prostate, it hurts like hell

infact my pain increases a lot if i jog after a long time.

Regards,
Ankush


Tue Feb 12, 2019 6:01 pm
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Joined: Wed Oct 24, 2018 6:46 pm
Posts: 31
Post Re: Toronto Sufferers
Thx for your insigths, and sorry for the belated response. That's a tough question. I think anyone even with a healthy prostate would experience some discomfort from a DRE, albeit in my case, when Ilia did the prostate drainage (full compression of the prostate to release the fluid) yes it hurt quite a bit. He also touched a few muscles around the prostate, and they hurt too. So my best guess is that the 3 month treatment of massage and anti-bios likely may have killed the bacterial infections, and that I'm now left with pain in the surrounding pelvic muscles, but that's just a guess. There doesn't seem to be any easy way to get at or stretch these pelvic muscles, and I doubt that stretch exercises or PT (they avoid the muscles around the prostate) will do much. I'm seriously considering alternative experimental treatments like pudendal nerve block injections (to suppress the pain in the perineum area), or prostate botox injections (to suppress the pain in the prostate). I'm really perplexed and disabled by this terrible disease, so any thoughts or comments about these cutting edge injection therapies w/b most appreciated.


Sun Mar 24, 2019 9:08 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
Lions Mane mushroom supplement eliminated the discomfort I had due to nerve damage which developed after a severe bacterial prostatitis. Can be ordered from Amazon. I started noticing the effect after 6 days of taking it. Been taking it for 6 weeks now.


Fri Apr 05, 2019 12:21 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Hi Guys,

Has anyone of you got any relief from trying anything ?

It might sound weird but I need to ask a question.

I have been noticing this since 2 years now in my stool pattern. In place of big chunks of stool, my stool comes as many small little chunks.

Has anyone of you noticed the same problem ?

Regards,
Ankush


Fri May 24, 2019 12:01 pm
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