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 Toronto Sufferers 
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Joined: Mon Jun 26, 2017 8:15 pm
Posts: 4
Post Re: Toronto Sufferers
Thanks a lot for your suggestions guys! My guess is that it is bacterial: gardnerella, since the girl I was seeing at the time this started (2.5 years ago) had BV. Doctor’s have been telling me men can’t have it, but clearly they don’t know what they’re talking about (as I've found some medical docs/studies of men having it). Will see if I can get Ilia’s services covered by insurance.


Tue Jun 27, 2017 5:22 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
WS has some very good points as well. I did test poitive for mycoplasma and candida with dna test. I was tested elsewhere but mycoplasma testing is not accurate wiyh typical testing and i came back negative.
That being said, i was retested at dna lab and all negative now and stil. Have symptoms so im not even sure it is related.
If you dont want to wait 6 month then i would see ilia...he also mentioned garderella as a possible cause..i did the antibiotics and it didnt help.
WS and yak have been a great help to me as well...feel free to ask for advice hear. We have tried it all...


Tue Jun 27, 2017 10:52 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
lookingForCure123 wrote:
Hello, I am also in the Toronto area, and trying to get this issue treated. Been pretty frustrating so far. Urologist put me on 6 weeks of doxycicline, and the only diagnosis test he did was DRE. It didn't help. I saw him again and asked for a prostatic secretions (EPS) test, but they didn't do it properly/there was a disconnect between the lab and the doctor. He also scheduled a cystoscopy for September which seems invasive and I don't want to do it.

I am thinking about going to the The Toronto Prostatitis Care Centre, to see Dr. Kaploun. Hesitant cause of the price. Also thinking about trying to get referred to the Murray Koffler Urologic Wellness Center instead, it seems that Dr. Kaploun works there as well, and they have diagnosis description on their website that seems like they actually do the EPS properly Has anyone tried this or some other urologist that actually does testing properly?

Would you guys recommend going to the Toronto Prostatitis Care Centre, to see Dr. Kaploun?

Thanks!




Hello Lookingforcure. Welcome to the club. It's unfortunate for all of us to be part of this. I started seeing Ilya July of last year, 2 months after I was diagnosed. I improved after seeing him couple of times but then I stopped. I had a very bad relapse on October and I started seeing him again the following month and went back to square one with my treatment. I now see him once in every 6 weeks and I've been successfully managing my symptoms for the past 8 months now mostly at around 95%-98% symptom free. I would say that Ilya is worth a try. If your CP is bacterial in nature then he might be able to help you but if not then I don't think he can. Before trying other option go to Ilya first so you can have a complete and thorough urologic examination. Don't worry about the fees even if it's not covered by your insurance, your health is the topmost important more than anything else. You will always have opportunities to make money once you get back to your original health and normal life. When I started seeing Ilya, I was so desperate, my pain was unbearable 10 out of 10. I was looking to fly to China or Greece to seek treatment and I did not care if it will cost me an arm and leg. I'm glad I didn't, it saved me 30K of treatment cost. I may agree with WS on Ilya's knowledge being old school but who else has good knowledge with this condition? 95% of Urologists doesn't have a clue on this anyway. If your test results come back positive, stick to him, but if it's negative then start to look for other treatment options like PT, Chiro, Osteopath, Homeopath etc. Seems like Ilya's knowledge is more focused on CP of bacterial cause. WS is true about me being incredibly disciplined. I follow Ilya's advice very carefully regarding diet and lifestyle changes. I also did a lot of research and experimentation regarding different natural herbs and supplements. While seeing Ilya, I did see different specialists like physiatrist, neurologist, and Chiropractor so I can rule out other possible cause. Another guy I've been helping here is Martin. He had some positive experience with his treatment with Ilya too. You may want to ask his opinion as well.
Good luck on your treatment and feel free to message me if you have any question.


Thu Jun 29, 2017 1:47 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Hi Guys,

I am having Pelvic pain for around 2 years now, have seen 3 Urologist and they have all told me that it is muscle pain. I am doing Physiotherapy and Chirpractor for 6 months and my symptoms vary everyday with more bad days than good days. I am able to sleep throughout the night without waking up.

The only thing that makes my symptoms worse is ejeculation and smoking.

I am going to see Ilia tomorrow just to rule out the possibility of an infection. Does he tell on the very first visit if there is an infection ?


Wed Apr 04, 2018 9:28 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
ankush0687 wrote:
Hi Guys,

I am having Pelvic pain for around 2 years now, have seen 3 Urologist and they have all told me that it is muscle pain. I am doing Physiotherapy and Chirpractor for 6 months and my symptoms vary everyday with more bad days than good days. I am able to sleep throughout the night without waking up.

The only thing that makes my symptoms worse is ejeculation and smoking.

I am going to see Ilia tomorrow just to rule out the possibility of an infection. Does he tell on the very first visit if there is an infection ?



He can tell if there is a possible infection by examining your EPS. He can also tell if you have a pelvic muscle floor dysfunction based on the tightness during DRE.


Thu Apr 05, 2018 12:59 am
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Joined: Fri May 08, 2015 2:59 pm
Posts: 663
Post Re: Toronto Sufferers
ankush0687 wrote:
Hi Guys,

I am having Pelvic pain for around 2 years now, have seen 3 Urologist and they have all told me that it is muscle pain. I am doing Physiotherapy and Chirpractor for 6 months and my symptoms vary everyday with more bad days than good days. I am able to sleep throughout the night without waking up.

The only thing that makes my symptoms worse is ejeculation and smoking.

I am going to see Ilia tomorrow just to rule out the possibility of an infection. Does he tell on the very first visit if there is an infection ?


You could try some magnesium to relax muscles.

There are also the herbs valerian (dried tincture) and American skullcap (requires a fresh tincture). KSM-66 ashwagandha is also antispasmodic and has anti-inflammatory properties.


Thu Apr 05, 2018 7:40 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
I saw Ilia today. He said my muscles are very tender and my prostate is also inflamed. He could not take prostrate fluid and said that he will do that next time. He has also asked me to do semen culture at flow labs and also an expensive 370 dollars test at a DNA lab. I am really confused that why are we getting these test at so many different places. For today he just prescribed me some anti inflammatory. I am really confused if it’s just a private doctor making lot of money from me. Did all of you went through so many tests.

Regards,
Ankush


Thu Apr 05, 2018 7:30 pm
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Joined: Sun Jan 21, 2018 11:57 pm
Posts: 14
Post Re: Toronto Sufferers
I have also been seeing Ilia here in Toronto for a couple months. Although I do have some issue with his lack of 'bedside manner' he is knowledgeable and trusted by more than a couple reputable urologists in the city. In my opinion, you go to see him because he is willing to order the proper, thorough testing needed to help (keyword: help) pin down the true cause of your affliction. That's an important step in getting over this. The urologist I saw before Ilia was dismissive, said nothing was wrong with me and because of that I was in the dark for a year longer that I should've been about my symptoms. Ilia has at least helped me get started on the path to recovery.

The reason you are being sent to different places is because that's where the tests are done. I recommend putting the DNA off until other tests have been exhausted. It is expensive and potentially unnecessary. I have not been lucky in identifying the cause of my symptoms and will be going through with it soon.


Thu Apr 05, 2018 9:37 pm
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Joined: Thu Nov 05, 2015 5:48 pm
Posts: 463
Post Re: Toronto Sufferers
What was the cause in your case, and what are your next steps.

I saw him a few years back and am still not sure about him, but at the very least he does offer thorough testing.

Insurance covered the treatment for me under nursing services.


Thu Apr 05, 2018 10:55 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
I have been seeing ilia for 15 months... he is has alot of experience and is willing to try different approaches. My first uro was dismissive and referred me to dr Jarvi at mt sinai. I am still seeing dr jarvi but he has said he has no clue whats wrong with me. His last rx was to wait 3 months and see if i get worse and go for more testing. He thought i would get better or worse...i am the same. Doing testing at flolabs next week. Ilia says him and jarvi disagree on dealing with this even though they work out of same clinic at mt sinai.
Ilia wants to try me on clavulin....will see what jarvi says in 3 weeks. I dont think u will find a uro in toronto with more knowledge then ilia about prostatitis.


Sun Apr 08, 2018 10:52 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
I do understand that we are being told by different Urologists that we are absolutely fine but still we are suffering and that is why we are all seeing Ilia but everyone at this forum is only telling that he is experienced but no one is telling if they are actually cured. I am already suffering from this for 2 years now, my personal and professional life is screwed, I have gained 13 KGs weight and I live in London so I have to travel a lot to see Ilia.

I also smoke like 1 cigarette a day. I am planning on giving up smoking. Has anyone felt any better after leaving smoking


Mon Apr 09, 2018 10:24 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
and I smoke a cigarette a day. Has anyone felt better after giving up smoking?


Mon Apr 09, 2018 10:40 am
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
Well, i applaude you quitting smoking but i doubt 1 cigarette a day is causing any of this. I have never smoked and i have similar issues. That is a very far commute, unfotunatly you dont have many options. Who knows how successful ilia is with patients, but i also dont think everybody here has same problems even though its all been labelled "prostatitis.


Mon Apr 09, 2018 2:42 pm
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Has anyone got a Trans rectal Prostate ultrasound done. None of the Urologists asked me to go for it but Ilia has asked me to get it done.

It seems like a scary and painful procedure

Has anyone of you gone through it and was it helpful to diagnose the condition


Mon Apr 09, 2018 5:26 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
I had the prostate ultrasound at ilia's request. It was painless and the worst part was having to hold my pee (need a full bladder during it). Nothing to be worried about in my opinion. If you hsve had him massage prostate, that is way worse! Fyi, i had no calcification around prostate.


Mon Apr 09, 2018 8:09 pm
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Has anyone tried pelvic reallignment?

I went to a Chiro and she said that I have a twisted Pelvic and she was doing weekly allignments and It was a bit beneficial


Tue Apr 10, 2018 4:48 pm
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Joined: Thu Nov 05, 2015 5:48 pm
Posts: 463
Post Re: Toronto Sufferers
TRUS is completely painless. Not something to worry about.


Wed Apr 11, 2018 10:46 am
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Hi Guys,

Ilia has told me today that results of DNA TEST of semen and urine sample have come and they have found Mycoplasma in both the samples.

has anyone else got similar results?


Mon Apr 23, 2018 2:05 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
I had same tests and ilia said i had mycoplasma in urine but neg in semen which he said was a bit wierd. I did a bunch of antibiotics...got retested and was negative but none of symptoms have gone away. Dont know what to tell u


Tue Apr 24, 2018 10:45 pm
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Thanks for the reply. Ilia has told me that I have mycoplasma genetelia in both Urine and Semen..

I will be seeing him on 5th May but before that I have to go for semen test at Flowlabs on 28th April

If there is no improvement in your symptoms then what motivates you to continue seeing him

Dynacare lab also test for Mycoplasma in Urine and its covered through OHIP, you may try that


Wed Apr 25, 2018 10:13 am
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
Well, dynacare does cultures for mycoplasma which are covered but highly unreliable as it is very difficult to culture myco. That being said, i have probably done 3 tests with them in last 6 months...all neg.
I continue to see ilia as he is only one who is willing to try anything. Most uros know little about this and ilia is very experienced. There is nobody else to see who is any better. I also see dr jarvi at mt sinaii and he has said he has no clue whats wrong. Said to take 3 months off drugs and get retested...i did last week and see him monday. I kbow nothing will come back on tests and he doesnt know what to try next.


Wed Apr 25, 2018 7:35 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
I feel sad to read all your frustrations, sufferings, confusion and pain. The mental torture is even worse than the physical one. I am one of those sufferers who had success in managing my symptoms through the help of Ilia. There were 2 other guys I met here in the forum which I referred to him and had some success too. I knew because I continue to stay in touch with them and monitor their progress. The guys who were cleared of infection never come back in this forum and share their experiences so it is really hard to gauge the success rate of Ilia's treatment but at least there are 3 of us now (myself and the other 2 guys) who can say we got cleared from infection.
I started seeing Ilya June of 2016. Unlike most of you guys my result were all negative. I never had any positive result. My only bases that my case was bacterial type was my EPS fluid that has a presence of clumps of WBC which can be an indication of infection. Without identifying the causative agent it was a hard journey. I was so depressed and almost committed suicide. It was the most lowest point of my life. My faith to GOD was the only thing that kept me going with my life. I responded to antibiotics but I was never cleared of infection. Until one time Ilia recommended me to take a supplement called CANDIDA STOP. I was hesitant to take it because I was never tested positive for fungus, but Ilia said he has a lot of patient who benefited from it even they were never tested positive for candida. After two weeks of taking the supplement I came back to Ilia and complained the horrible die off symptoms. That was the indication of many fungus dying inside my body. We then agreed to focus on treating candida with a much stronger anti fungal drug Fluconazole. A total of 2 months in Fluconazole (thank God it did not create damage to my liver) remarkably improved my symptoms. I then followed it with other anti candida supplements like Alimax (for 1 month), then CANDACLEAR for 2 months and also following an extremely strict candida diet. I am now 98% symptom free and fully cleared from infection. Ilia now wants to see me every six months for a prostate massage but I insisted to see him every 4 months. At first I requested to see him every 6 weeks but he said I will only be wasting my money paying him $80 per visit hen I already knew that I'm cleared from infection. So I don't think the guy is after our money. Also I'm not here to promote Ilia's services. I was once a sufferer like you guys, FREAKINFRUSTRATED knows me from this forum so he can confirm that I'm not a fake account. Most above all I credit my complete healing to my lord Jesus Christ, he is the true healer.


Fri May 04, 2018 4:21 am
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 259
Post Re: Toronto Sufferers
Thanks for the posts Yakuh...it has helped sharing with you over the last 1.5 years and happy that you have gotten to the point where you are. I know some dont like ilia approach but he is knowledgeable and willing to try new things.
Dr jarvi is a little perpexed and was suggesting i go to the cleveland clinic or try to see dr nickle in kingston.
Dr jarvis office called me yesterday which was a surprise and he wants to see me next month and to start to see the infectious disease doctor again as he has access to better testing.
Im in no pain but mentally this is exhausting.


Fri May 04, 2018 11:11 pm
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Joined: Wed Apr 04, 2018 9:10 pm
Posts: 15
Post Re: Toronto Sufferers
Hi Guys,

I saw Ilia again last week and he told me that my Prostate does not seem very bloggy and honestly I dont know much about these terms.

He has prescribed me doxycycline 100 mg twice daily for a month and has also prescribed Diazepalm/Baclofen suppository

Has anyone prescribed similar drugs ?

Its been 5 days since i started taking anti biotic and no relief till now :-(

Has any one got any relief taking doxycycline? Google says that Azithro is a better anti biotic for this but I really do not believe what I read on google anymore

Kindly share your thoughts

Regards


Mon May 14, 2018 4:44 pm
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Joined: Sun Nov 06, 2016 12:59 am
Posts: 308
Post Re: Toronto Sufferers
ankush0687 wrote:
Hi Guys,

I saw Ilia again last week and he told me that my Prostate does not seem very bloggy and honestly I dont know much about these terms.

He has prescribed me doxycycline 100 mg twice daily for a month and has also prescribed Diazepalm/Baclofen suppository

Has anyone prescribed similar drugs ?

Its been 5 days since i started taking anti biotic and no relief till now :-(

Has any one got any relief taking doxycycline? Google says that Azithro is a better anti biotic for this but I really do not believe what I read on google anymore

Kindly share your thoughts

Regards




I took doxy for 4 weeks, it did reduce some symptoms but not all. Be patient with your treatment, healing can take sometime. It took for me 8 months of continues treatment and taking several abx before achieving 95% symptom free. Best approach is cocktail of abx and anti fungal and most importantly diet modification and lifestyle changes. Follow what Ilya advices you when it comes to diet. He would know if yours is caused by bacteria or not.


Mon May 14, 2018 10:45 pm
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