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 Toronto Sufferers 
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Joined: Thu Nov 05, 2015 5:48 pm
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Post Toronto Sufferers
Who's living in Toronto or the GTA?


Thu Jan 14, 2016 12:03 pm
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Joined: Thu Nov 05, 2015 5:48 pm
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Post Re: Toronto Sufferers
Bump - Anyone?


Tue Jan 19, 2016 1:59 pm
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Post Re: Toronto Sufferers
Hi WS1234, I live in Toronto and was diagnosed with CP\CPPS 7 months ago. This post is quite old but I would like to know your progress with your treatment?


Tue Dec 13, 2016 12:53 am
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Post Re: Toronto Sufferers
not much progress. Having some mild success with a diazapam / bacolfen suppository.

I've tried the following:

1.) A handful of Toronto/GTA urologists - would not recommend any of them
2.) Dr. Curtis Nickel in Kingston - he's the pro on CPPS/prostatitis but didn't provide much for me in terms of treatment
3.) Ilia Kaploun's private clinic - expert on bacterial prostatitis but his treatment is expensive and comes with risks. Includes LOTs of ABX + prostate massage even in the absence of bacteria. Didn't have success with him, but he is willing to try new things and is great in terms of providing testing and imaging. If you have benefits through work you may be able to get them to cover this by making a special exception for "nursing services".
4.) Pelvic Physio #1 - Laura Disenhaus who is an Osteo and Pelvic PT. Wasn't helpful in my case and is super expensive.
5.) Pelvic Physio #2 - Jessica Nargi is a pelvic PT. She is a pro when it comes to the nervous system and her approach is all about calming down the nerves. I would recommend her if you haven't explored the muscular/nerve theory of this stupid condition.

I'll be attending the Wasser Pain clinic next week (after a very long wait) to see if they have anything they can add, and I'm starting with a CBT in January to attempt to deal with this from the mental side of things.

Wish i had more positive's to report but i'm still in pain. Things are a bit better at the moment (maybe due to the suppository) but its still a major problem for me.


Tue Dec 13, 2016 1:26 pm
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Post Re: Toronto Sufferers
WS1234 wrote:
not much progress. Having some mild success with a diazapam / bacolfen suppository.

I've tried the following:

1.) A handful of Toronto/GTA urologists - would not recommend any of them
2.) Dr. Curtis Nickel in Kingston - he's the pro on CPPS/prostatitis but didn't provide much for me in terms of treatment
3.) Ilia Kaploun's private clinic - expert on bacterial prostatitis but his treatment is expensive and comes with risks. Includes LOTs of ABX + prostate massage even in the absence of bacteria. Didn't have success with him, but he is willing to try new things and is great in terms of providing testing and imaging. If you have benefits through work you may be able to get them to cover this by making a special exception for "nursing services".
4.) Pelvic Physio #1 - Laura Disenhaus who is an Osteo and Pelvic PT. Wasn't helpful in my case and is super expensive.
5.) Pelvic Physio #2 - Jessica Nargi is a pelvic PT. She is a pro when it comes to the nervous system and her approach is all about calming down the nerves. I would recommend her if you haven't explored the muscular/nerve theory of this stupid condition.

I'll be attending the Wasser Pain clinic next week (after a very long wait) to see if they have anything they can add, and I'm starting with a CBT in January to attempt to deal with this from the mental side of things.

Wish i had more positive's to report but i'm still in pain. Things are a bit better at the moment (maybe due to the suppository) but its still a major problem for me.






Thank you WS1234 for sharing. I'm currently getting some treatment from Ilya Kaploun. I agree he is expensive but at least I got a full urologic exam which I never got from my first Uro in Scarborough. I've heard of Jessica Nargi and she was also recommended by another sufferer. I will contact her once I explore the neuromuscular theory. I have an appointment with my Immunologist in January, I'll see what he can do for me.
I'm sorry to hear that you did not find much solution to your condition. What worked for me is diet modification. I eat 95% natural foods. I avoid gluten, sugar\sweets (main culprit with my flare ups), caffeine (another main culprit), alcohol, milk and dairy products, red meat, spicy foods and acidic foods. I take a lot of supplements like moringa capsule, magnesium glycenate (it helped relax my muscles), bromelain, quercetin, probiotics and Ilya recommended prostaphil and prostate 5LX. My family doctor also prescribed ceplralex for the anxeity that I have experienced since the first onset of this ailment 7 months ago. I do walking everyday for an hour which really helped with my circulation. All of these especially the diet modification gave me a remarkable improvement. Next thing that Im planning to do is to go to a reputable Chinese Doctor to try chinese medicine. My family doctor is Chinese who doesn't believe in Chinese medicine but shared her mom's experience who suffered with CPPS for five years and was cured by Chinese medicine. Have you gone to a Chiropractor to have your Sacro Iliac Joint checked? I am considering that as well and there is a Chiro in Mississauga who is classically trained with Sacro iliac joint problems.


Tue Dec 13, 2016 8:43 pm
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Post Re: Toronto Sufferers
Thanks for the info. What is the Chiro in Mississauga's name?


Tue Dec 13, 2016 9:32 pm
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Post Re: Toronto Sufferers
Erin Mills Health Facility was recommended by another sufferer who has pelvic misalignment causing his CPPS

Advanced Healthcare is another clinic specializing in twisted pelvis\pelvic misalignment located at Sheppard Ave.


Wed Dec 14, 2016 2:40 am
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Post Re: Toronto Sufferers
Yakuh, diet is the thing that has helped me. I use lentils, buckwheat, potato and quinoa as staple foods. Then some veggies, organic meat, wild fish and homemade goat yogurt.


Wed Dec 14, 2016 9:00 am
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Post Re: Toronto Sufferers
Cool - let me know how it goes with them. I have worked with a few chiros in Toronto but this hasn't yielded much results in my case. Going to try another one in Oakville early next year that came recommended.


Wed Dec 14, 2016 11:52 am
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Post Re: Toronto Sufferers
jaumeb wrote:
Yakuh, diet is the thing that has helped me. I use lentils, buckwheat, potato and quinoa as staple foods. Then some veggies, organic meat, wild fish and homemade goat yogurt.


Hi jaumeb, diet modification played a big role in controlling my symptoms as well. I eat brown rice, sweet potato, plantain and corn as my staple foods. Then mostly fish, chicken breast, and veggies like eggplant, avocado, mushroom etc.


Wed Dec 14, 2016 4:11 pm
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Post Re: Toronto Sufferers
Yakuh, I forgot to mention that I also use raw extra virgin olive oil and raw extra virgin coconut oil.


Wed Dec 14, 2016 5:20 pm
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Post Re: Toronto Sufferers
Jaumeb, Im using those too and on top of that i'm taking moringa capsules to make sure I'm getting the daily nutrients that I need. Do you have the bacterial or the non bacterial type? How long do you have this ailment and how's your progress?


Wed Dec 14, 2016 6:15 pm
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Post Re: Toronto Sufferers
yakuh11 wrote:
Jaumeb, Im using those too and on top of that i'm taking moringa capsules to make sure I'm getting the daily nutrients that I need. Do you have the bacterial or the non bacterial type? How long do you have this ailment and how's your progress?


I think I have cpps. I have had this all my life as I remember hesitancy when I was a kid. I had occasional pains since 1996 which were self-resolving. Then in 2004 the pain never went away and became chronic. I feel better now than one year ago so I hope things will get better ...


Thu Dec 15, 2016 9:10 am
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Joined: Thu Dec 22, 2016 1:03 pm
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Post Re: Toronto Sufferers
I agree about the very average urologists here in Toronto
...
they throw antibiotics at you and if they dont wprk you have to wait ages for an appointment, im currently ona 2 month wait again.


Thu Dec 22, 2016 7:18 pm
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Post Re: Toronto Sufferers
stephenfraser92 wrote:
I agree about the very average urologists here in Toronto
...
they throw antibiotics at you and if they dont wprk you have to wait ages for an appointment, im currently ona 2 month wait again.



How long have you been suffering from CP\CPPS? I'm currently undergoing treatment with Toronto prostatitis centre. Its a private clinic but the wait is not that long.


Fri Dec 23, 2016 3:54 pm
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Joined: Thu May 12, 2016 6:30 pm
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Post Re: Toronto Sufferers
NAC (N-acetylcysteine) is what has done it for me. 1200mg/day divided in 2 or 3 doses. This is a readily available over-the-counter supplement. This is a very interesting compound with a number of medical uses. If it is going to work a couple of weeks should be sufficient to find out. If you do try it please report your results back.


Fri Dec 23, 2016 10:22 pm
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Post Re: Toronto Sufferers
JoeW wrote:
NAC (N-acetylcysteine) is what has done it for me. 1200mg/day divided in 2 or 3 doses. This is a readily available over-the-counter supplement. This is a very interesting compound with a number of medical uses. If it is going to work a couple of weeks should be sufficient to find out. If you do try it please report your results back.



thanks for your input.


Sat Dec 24, 2016 2:21 am
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Joined: Thu Nov 17, 2016 3:20 pm
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Post Re: Toronto Sufferers
Hey guys...also in gta. Also seeing ilya kaploun at prostate clinic. Sent tests to lab last week...625 bucks for testing so far. Also sent me for a ultrasound. Waiting on results.

Ilya has me on oregano capsules daily...prostaphil, but i cant find it at local store. Where did you find it???
Started 2 weeks of azithro..3 days in and no change at all. Im not very optimistic that it will work.
I know WS was unsuccessful with ilya so im not sure i will have better results. Same symptoms i believe.
If it was bacterial than the inflamed meatus would improve with drugs even if it didnt penetrate the prostate fully.
2.5 months in so far...just some discomfort in bladder and urethritis now. Just cant kick it.
Please keep posting guys....you are my best sources. Urologists suck


Sat Dec 24, 2016 11:29 am
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Post Re: Toronto Sufferers
freakinfrustrated wrote:
Hey guys...also in gta. Also seeing ilya kaploun at prostate clinic. Sent tests to lab last week...625 bucks for testing so far. Also sent me for a ultrasound. Waiting on results.

Ilya has me on oregano capsules daily...prostaphil, but i cant find it at local store. Where did you find it???
Started 2 weeks of azithro..3 days in and no change at all. Im not very optimistic that it will work.
I know WS was unsuccessful with ilya so im not sure i will have better results. Same symptoms i believe.
If it was bacterial than the inflamed meatus would improve with drugs even if it didnt penetrate the prostate fully.
2.5 months in so far...just some discomfort in bladder and urethritis now. Just cant kick it.
Please keep posting guys....you are my best sources. Urologists suck


There is a health store at yonge and bloor located across the underground entrance of ZARA besides an optical shop. That's where I get my prostaphil, they sell it for $53.99, I will order my next bottle from Amazon, it's a bit cheaper.
I started treatment with Ilya last July, and I would say it's worth a try. Ilya do prostatic massage and examines the prostatic fluid which other urologists does not. My first urologist in Scarborough did not even bother to request an ultrasound at least with Ilya I had my complete urologic exam done. In my case I responded well with Bacrtim and my ultrasound shows my prostate is almost normal, the only problem is I have some prostatic calcification which makes my prostate prone to infection. Diet modification helped me lot. I still experience discomfort in the bladder and occasional penile pain but I can say that my symptoms had reduced by 50%. My next appointment will be in 2 weeks and if I continue to experience some occasional symptoms I might decide to start treatment with a physical therapist for trigger point release. it's possible that the cause of mine is partly bacterial and partly pelvic floor dysfunction.
I'm just curious what type of test he performed to you that cost $625.? I was charged $350 on the first visit and $80 per visit thereafter.


Mon Dec 26, 2016 1:21 am
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Post Re: Toronto Sufferers
The testing was for a private lab that does different tests than usual. He said if I was single he wouldn't bother with it but since I'm married wanted to check for chlam, trich, mycoplasma, endoplasma, candida, and a few others....in semen and urine. Waiting for results.
He said my previous lab results were useless as I gave sample 7 days after antibiotics. He says you need to wait 3 months after antibiotics for those tests to be reliable? Not sure why my doctor and urologist didn't know that?
So Ilya is worth the time and money?
He has been good for testing, ultra sound and lab work.


Tue Dec 27, 2016 10:09 am
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Post Re: Toronto Sufferers
freakinfrustrated wrote:
The testing was for a private lab that does different tests than usual. He said if I was single he wouldn't bother with it but since I'm married wanted to check for chlam, trich, mycoplasma, endoplasma, candida, and a few others....in semen and urine. Waiting for results.
He said my previous lab results were useless as I gave sample 7 days after antibiotics. He says you need to wait 3 months after antibiotics for those tests to be reliable? Not sure why my doctor and urologist didn't know that?
So Ilya is worth the time and money?
He has been good for testing, ultra sound and lab work.


Well, I would say that Ilia's clinic is probably the best that we can get here in Toronto as far as CP\CPPS treatment. Other Uro doesn't bother to perform prostatic massage or request other tests, they just rely on the result of urine exam which is useless anyway. I'm also waiting for the result of my urine and semen tests. My ultrasound shows my prostate is almost normal but I still have some few symptoms. On my next visit we will determine if I need to see a physical therapist for a possible pelvic muscle floor dysfunction.
I'm also thinking of trying Traditional Chinese Medicine, but I have to wait until I get the result of my tests at Ilia's clinic. Im so determined to fully recover from this disease this is why I am looking at every possible option. The sooner the better. Its been 7 months for me and it already affected my work, business and my life in general. I temporarily stop going to the gym because the doctor said heavy lifting may negatively impact my recovery, and it was not easy for me to give up my routine workout since it was part of my life for over 10 years. I just do stretching and some walking as part of my daily exercise now. So for me it's a complete 360 degree turn when it comes to lifestyle change but I continue to be optimistic. Continue to connect with me and i will be happy to share my experiences and progress with this challenging journey.


Tue Dec 27, 2016 6:16 pm
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Post Re: Toronto Sufferers
Hey WS??? what was Dr Nickels thoughts about this. Did he believe it was bacterial lie ilia does??

Any updates Yak? I have still been working out and wasnt told to stop....have avoided heavy squatting but still lifting and doing hard workouts. My lab results should be back tomorrow I think. Will update.


Tue Jan 03, 2017 11:04 am
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Post Re: Toronto Sufferers
So I found out that Nickel's prostatitis/pelvic pain research centre was de-funded and has been closed since I went to visit. He had a clinic set up with funding through Queens University but i guess the money dried up. Pretty sure you can see him at his normal office still. At the time I saw him at the research clinic, they performed EPS, and urine tests pre/post prostate massage and tested for bacteria; however, he says he rarely sees positive results for bacterial infections and is more a proponent of the non-bacterial theory. They also did an ultrasound of pelvis during my exam. If he doesn't find bacteria, he will provide you with a prescription for Elavil and an alpha-blocker and thats it. Maybe you could call his office and ask if he has a urologist he can recommend in the GTA?

He's not going to provide miracles, but if you want to speak with a urologist who has an active interest in this condition, he's one of the few.


Tue Jan 03, 2017 2:45 pm
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Post Re: Toronto Sufferers
freakinfrustrated wrote:
Hey WS??? what was Dr Nickels thoughts about this. Did he believe it was bacterial lie ilia does??

Any updates Yak? I have still been working out and wasnt told to stop....have avoided heavy squatting but still lifting and doing hard workouts. My lab results should be back tomorrow I think. Will update.


My lab result and appointment with Ilia will be on the 17th. Will update you.


Tue Jan 03, 2017 5:23 pm
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Joined: Sat Jan 07, 2017 7:54 pm
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Post Re: Toronto Sufferers
Hi,

I am in Toronto also.
Thanks for the information.

I have had prostatitis for one year, though I have only tried:

  • Macrobid (7 days) - cured first UTI
  • Cipro (7 days not long enough) - cured recurring UTI but caused prostatitis
  • Macrobid (14 days) - did nothing, doctor didn't know it cannot penetrate prostate, though I told him it was prostatitis
  • saw urologist Dr. Nick Frank Logarakis in Scarborough, only offered more Ciprofloxacin, would not do any extra tests
  • did my own prostate massages 4-5+ and it helped decrease my symptoms by 50%
  • taking magnesium, zinc, and saw palmetto daily helps urination


Sat Jan 07, 2017 10:39 pm
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