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 Phages journey 
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Joined: Tue Aug 04, 2015 6:50 pm
Posts: 1087
Post Re: Phages journey
Thanks Dom, yeah...I am seriously considering phages especially if I get enterococcus in my microgen results. Previous Naat semen culture showed light growth. Interestingly enough, I just read about stateside research lab that uses phages in an attempt to save terminal infection patients where antibiotics have failed. MRSA patients, etc.


Mon Jun 18, 2018 2:23 pm
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Joined: Fri Mar 18, 2016 4:12 pm
Posts: 106
Post Re: Phages journey
dom_hend wrote:
No I did culture when I got here. Enterococcous and Staph.

Make sure if you come you go ONLY to the real/original clinic. Message me if you need details.


Would be good to hear how your getting on


Mon Jun 18, 2018 4:33 pm
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Joined: Fri Mar 10, 2017 8:00 am
Posts: 37
Post Re: Phages journey
Hi
Any more progress in this thread?
I had e faecalis in one test done (urethral swab after massage)
But then I had a semen test that only showed normal flora.
(But it said aerobe test, so maybe it didn't catch the e faecalis?)
I'm thinking about doing the phage therapy. The problem is I have a family and I can't stay away 2 weeks. I'm thinking just to send down a sample to look for bacteria, go there, do a check the same day, Get the phages. Go home and treat at home, wait for results of their check. After initial treatment. Send new semen test. Based on that and the test on first visit, I could stop by for new phages.

BUT, I would much rather go to Poland if that's an alternative. Any one knows anything about phages in Poland? It would only take an hour flight for me, I could go over a day.

It's stupid that the toll don't allow for phages to be sent in mail, atleast not to my country.

Then again, I have 2nd thoughts about the bacterial/mind body thing.
Phages are no silver bullet. Some seem to get cured, some don't?
Theres always very costly solutions? MindBody or TMS can produce the same symptoms, Even the urogenitally (in fact frequency is very common in TMS, tension myosytis syndrome) tight spasmic pelvic muscles can create inflammation (make the prostate inflammed?)
Phages seem to kill the bugs, but the problem persists?
Seems like a lot of men has EF in semen (also healthy men)?


Mon Jul 23, 2018 9:30 am
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
i have heard different things from different people i know of someone in poland who will go to wroclaw to give it a go.it appears that if u have a bacteria in a semen culture you have a problem or in a prost fluid culture too.sorry i cant be of more help.i can post you there experience if it helps but itll take some time


Mon Jul 23, 2018 11:40 am
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Joined: Mon Jul 23, 2018 2:22 pm
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Post Re: Phages journey
skistar
went to Wroclaw beginning of March this year to take the 4 glass test.
it’s an obligatory procedure even if you have sent a sample previously to the institute .
they found only low counts of E.faecalis in the EPS and no WBC , so finally I decided not to go for the phage treatment as it is unclear if this bacteria is really the causative agent of my problems.

worth mentioning that the people at the Institute are really friendly and helpful and that the 1h exam + the lab tests only cost me 150 Euro ( some private doctors in my country take 200 Euro for 20 min and tell you to “relax”)


Mon Jul 23, 2018 3:09 pm
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Joined: Thu Dec 31, 2015 4:11 pm
Posts: 604
Post Re: Phages journey
I do think that enterococcus faecalis is the cause for many of us. Some strains of this bacteria can be very stubborn. I'm pretty sure that if I can find the way to clean that bacteria I'll get cured from this.


Tue Jul 24, 2018 6:08 pm
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
hi chavalote what u say is very true may i suggest you try a culture of semen and prost fluid and then abx sensitivity test ,that will give u a few clues.


Tue Jul 24, 2018 8:13 pm
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Joined: Fri Mar 18, 2016 4:12 pm
Posts: 106
Post Re: Phages journey
Phages is still on the back burner for me, I have a new urologist in the UK and have a good sensitivity to fosfomycin. I am going to try this route first, then if not successful phages will be next.

I am unclear on the treatment regime for phages, its two weeks at the centre, then what happens after this as assume the treatment in total is a few weeks?


Tue Jul 31, 2018 12:15 pm
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
good luck its effective but what about your prostate ?how will it enter?if its hard it wont get inside the prostates like that unfortunately.can u get massage t loosen it up and soften it?have you had a transrectal ultrasound?that will give u the size,its over 15 by muh and it wont get in as its enlarged and engourged the tissue wont permit entry.


Tue Jul 31, 2018 3:58 pm
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Joined: Fri Mar 18, 2016 4:12 pm
Posts: 106
Post Re: Phages journey
jonjon wrote:
good luck its effective but what about your prostate ?how will it enter?if its hard it wont get inside the prostates like that unfortunately.can u get massage t loosen it up and soften it?have you had a transrectal ultrasound?that will give u the size,its over 15 by muh and it wont get in as its enlarged and engourged the tissue wont permit entry.


I think you have hit the nail on the head jonjon, urologist have a half hearted approach to bacterial prostatitis, just prescribing pills with no massage to allow flow into the prostate and then the cycle repeats which I know all about.

Fosfomycin was the only antibiotics to clear all visual symptoms and improve ejaculation quality massively for me, which I never had on cipro or doxy.

I am seeing my urologist tomorrow, the process is under general anaesthetic then use a telescope to check your bladder etc, then use the telescope and (not sure how to put this without being crude) a finger anally to the give the prostate a really good massage whilst on antibiotics to really open it up. fingers crossed this will all work for me as not sure what else to try after this, its becoming a tiring journey of 2.5 years plus now to try and get some resolution.


Wed Aug 01, 2018 7:11 am
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
hi cerve sounds like youve been down the usual route!urologists,umm something of a misnomer i feel,prostatitis is a disease effecting a huge no of patients in 1 way or another and pathetic would be a generous word to use in regards to their skill and application in regards to the disease there are few exceptions unfortunately.cytoscopy i take it??can cause probs to,is the massage vigorous?if so thats a step in the right direction but you need it several times a week im afraid to soften and shrink the prostate.

this is what will get the blood in thats filled with the meds and WBC.r u on the NHS?2 1/2 yrs sorry to hear about that its a long painful journey,in my mind almost all prostatitis is bacterial and BPH is it too.rectal ultrasound?have you one of those?it wont tell u everything but will give u the size of the thing and also will tell u where inflammation and infections sited and a uro can take that and explain your symptoms better depending on the siting of above.

best of luck and hope u get a result,keep me abreast of your progress.im interested,im having a lot of progress myself but there r ups and downs.diet i feel is important. bacteria likes sugar,spicy food upsets the prostate,alcohol ,no no.i supplement with tumeric and fish oil.drink a lot of green tea,has some action on biofilms if your on treatment and pineapple although sweet has bromeline.processed food like white bread,white rice white pasta is not good either ,heavily fried foods too,

im off all the above and it helps in conjunction with the correct abx[according to antibiogram that is]its like youve got to attack it from every angle all the time,but getting those meds and wbc s into the organis the main task.uros have lost the art of massage and the attitude of a lot of em is banal and arrogant.some people are in massive pain and then told its all in the head,pathetic.more like the god ego in the white coat doesnt know how to deal with it.


Wed Aug 01, 2018 12:22 pm
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Joined: Fri Mar 18, 2016 4:12 pm
Posts: 106
Post Re: Phages journey
Thanks jonjon

No this is private, when I saw someone on the nhs they said there is nothing they could do for me. Lucky I can afford to pay for private treatment if I need it.

I have had
MRI
3 Ultrasounds
So far

Fosfomycin is the only abx I have had a really positive reaction from and studies have shown it has good penetration.


Wed Aug 01, 2018 4:58 pm
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
hi thats good,try to get prost massage as if prost is enlarged the organ will not allow the drug to fully penetrate thats the problem with the prostate ,its possible foci and biofilms may be present too.how old r u?how long have you had prostatitis?good luck.i hope u r successful watch the diet that helps.


Thu Aug 02, 2018 3:34 am
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Joined: Fri Mar 18, 2016 4:12 pm
Posts: 106
Post Re: Phages journey
Thanks again for the reply, jonjon.

My uro has prescribed me fosfo for 6 weeks, I will also take N-acetylcysteine (NAC) for bio films. He is going to do a deep prostate massage 3 weeks into the abx under general aesthetic, I will also try to conduct my own with a prostate massage every other day to help.

Fingers crossed.


Thu Aug 02, 2018 8:31 am
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
good luck i hope its a success,massage is best done each day and that allows the abx in.on a regular basis,.fos u will be taking each day i take it?prost can harden up again in 5 days if infected thats the problem.its a problem in that respect. the abx work according to susceptibility tests but youve gotta get it in there!!

i heard of some guy using a dildo like thing for massage. !!! rather him than me,i hope its not addictive!!excuse my attempts at humour but i think we have to smile in adverse circumstances!

i just finished my 1st round of treatment its gone very well.i needa month off now.abx free,it was 6 weeks the 1st time around DAY1 rectal ultra,yikes looked like a forest fire ,spooky.then semen and prost fluid at the lab-culture and 7 days later result,2 bugs,empirical treatment until the results came thru.2 abx oral.1 week.every day massage heavy duty,hurt to start with.

after bug result change the abx.1 more week of that then change to IM injection 10 days.start to improve a lot,stop that and then a weeks oral abx,finish with 5 days IV a real strong attack on it.2 times a day.all thru treatment massage every day,rectal ultra 2 days ago 90% improvement.the symptoms are almost gone,i must come back and go at it again only 4 weeks this time,we will start with a new semen fluid test that will tell us what remains.

WBC count and the strength of the infection too,i think one bug is dead and the other weak,my guess is a week s empirical based on what we know already and then IV as a kiler for 5 days.then a week on oral meds then again IV and then thats it,docs certain we will close the book on it then.i f&^$*g hope so!!!i think im almost there right now and im so happy about that.some people have this yrs and some r in extreme pain i was in poor shape when i arrived,id only had it about 2 mnths at that time too.i really hope u kick it mate go for it!!


Thu Aug 02, 2018 10:01 am
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Joined: Fri Apr 13, 2018 1:53 pm
Posts: 45
Post Re: Phages journey
-------


Last edited by dom_hend on Tue Aug 14, 2018 9:12 pm, edited 1 time in total.



Wed Aug 08, 2018 1:11 am
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Joined: Tue Aug 04, 2015 6:50 pm
Posts: 1087
Post Re: Phages journey
Installations? Just curious...I have no clue really, how do they administer the phages? Is it like an injection or something? If so, where? lol


Wed Aug 08, 2018 11:01 am
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Joined: Tue May 29, 2018 5:00 am
Posts: 35
Post Re: Phages journey
orally ,anally or as a bandage ,it depends on the condition.the circumstances and the most effective delivery method.phages can be successful but also have a failure rate.its not a guaranteed method,they do not work on certain types of bacterias.mycoplasma is but one example there are many others,they dont work against mycoplasma as the bacteria has no cell wall.there are 2 main places to get phage treatment wroclaw in poland[attached to the uni there] that has the heavy weight of EU govt on its neck.

it states this is an experimental treatment otherwsie EU law bans it,see control and big medicine behind that one,they are well thought of considerate and professional and the eliveria centre in georgia thats largely US run,yep they have to go a long way to escape the long grip of US medical incompetence and high costs along with big pharma trying to plainly stop them operating.theres 2 centres in georgia i hear this is the better one.i hope the info is of some help.


Wed Aug 08, 2018 12:07 pm
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Joined: Fri Apr 13, 2018 1:53 pm
Posts: 45
Post Re: Phages journey
Take a syringe, fill with phage, remove needle, point at pee hole, squeeze.

Some people are not bothered by it, it was extremely uncomfortable for me.


Wed Aug 08, 2018 7:35 pm
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Joined: Tue Aug 04, 2015 6:50 pm
Posts: 1087
Post Re: Phages journey
:o That sounds...awful. Couldn't be any worse than the direct injections though, I guess. I'm surprised they don't do a catheter and pump the phages in that way, might work well.


Thu Aug 09, 2018 10:42 am
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Joined: Fri Apr 13, 2018 1:53 pm
Posts: 45
Post Re: Phages journey
Inflamed
You an do oral only/anal suppositories too as remote treatment. Probably slightly less effective though, who knows. I think the center in Poland does not do urethral instillations.

As far as the MRSA case you said, that guy's wife is actually opening up a Phage center at UC San Diego medical center. But of course being in USA, you need FDA approval to take on the treatment, and they reserve it for patients on their death bed....red tape continues. I don't know about you guys, but emotionally I am on my death bed.


Thu Aug 09, 2018 1:07 pm
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Joined: Fri Apr 13, 2018 1:53 pm
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Post Re: Phages journey
-----


Last edited by dom_hend on Tue Aug 14, 2018 9:12 pm, edited 1 time in total.



Thu Aug 09, 2018 1:08 pm
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Joined: Fri Apr 13, 2018 1:53 pm
Posts: 45
Post Re: Phages journey
Honestly I don't understand why no docs do Antibiotic urethral installations or anal suppositories of abx? You would bypass so much of the intestinal tract and reduce side effects and deliver the abx at a much stronger concentration. I do believe I read somewhere that one Chinese clinic did urethral installations along with their injections and the person felt instant relief.

I'm not a doctor, I don't know if the liquid antibiotics could damage the urethra? I'm sure a carefully diluted solution to certain proportions is needed. Its so frustrating that for so many of us, if we had been treated aggressively at the beginning instead of being told its in our heads, we would never be here. That was definitely the case for me, multiple short courses, no one suspected prostatitis, I had no idea what a prostate was for a while, so I didn't speak up early enough for a more aggressive treatment and made the ultimate mistake of trusting doctors. I strongly believe this is a doctor created condition: early misdiagnosis, early mistreatment, leads to nearly incurable chronic state. Its so simple.

I really believe if most urologists finally get their heads out of their butts, and for once consider a lot of these are bacterial, they could get creative with method delivery of abx VERY quickly.


Thu Aug 09, 2018 1:19 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 632
Post Re: Phages journey
dom_hend wrote:
Honestly I don't understand why no docs do Antibiotic urethral installations or anal suppositories of abx? You would bypass so much of the intestinal tract and reduce side effects and deliver the abx at a much stronger concentration. I do believe I read somewhere that one Chinese clinic did urethral installations along with their injections and the person felt instant relief.

I'm not a doctor, I don't know if the liquid antibiotics could damage the urethra? I'm sure a carefully diluted solution to certain proportions is needed. Its so frustrating that for so many of us, if we had been treated aggressively at the beginning instead of being told its in our heads, we would never be here. That was definitely the case for me, multiple short courses, no one suspected prostatitis, I had no idea what a prostate was for a while, so I didn't speak up early enough for a more aggressive treatment and made the ultimate mistake of trusting doctors. I strongly believe this is a doctor created condition: early misdiagnosis, early mistreatment, leads to nearly incurable chronic state. Its so simple.

I really believe if most urologists finally get their heads out of their butts, and for once consider a lot of these are bacterial, they could get creative with method delivery of abx VERY quickly.


Because you need to get the abx into your bloodstream to get it into the prostate (aside from direct injections). And sticking something up into your rectum is a surefire way of getting a large dose into your bloodstream (google teens doing alcohol enemas). And if it gets into your bloodstream then it's going to affect your gut for the most part - see the number of people who get c diff from abx injections. There are a few like vancomycin that won't cross the gut barrier but good luck getting a doc to prescribe you daily injections of vanco. It'd be safer to just take cipro anyway. Quite a few abxs achieve high concentrations in the prostate via the oral route. It's clearly not as simple as just taking abxs.


Thu Aug 09, 2018 9:15 pm
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Joined: Fri Apr 13, 2018 1:53 pm
Posts: 45
Post Re: Phages journey
Do they need to get in the blood though directly?

When you instill ABX in urethra, naturally they travel down the urethra and reach the prostate/bladder. Bacteria live on/around our tissues, not the bloodstream itself = otherwise we'd be septic. If the abx gets in there thru urethra, its hits the bacteria directly and will eventually get absorbed into the tissues/blood.

When I was doing IV Cipro, the nurse by accident burst my vein and basically injected the entire dose of IV abx into my arm tissue. I had a huge bump, but over 45 minutes the body absorbed it. Wouldnt in theory the same thing happen if you injected abx on top of the prostate tissues so to say, it would get absorbed by it....I don't know.


Thu Aug 09, 2018 10:10 pm
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