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hiv medication and non- bacteriological prostatitis

Messages
8
Location
belgium
I hope you find the time to read my story = hiv medication and non- bacteriological prostatitis (total recovery of all my syptoms after hiv cocktail with intellence,prezista,norvirand and isentres)
Sorry for my English because i'm Dutch speaker

I have been living with non-bacteriological prostatitis for more than 20 years( painful urination, painful ejaculation,weak urinestream, erectile dysfunction, pelvic floor pain, pain in testes, prostate pain,loss of feeling in penis from nerve damage, loss of controle over some pelvic floormuscles etc.)

After many years of loads of antibiotics, and NSAID's medication without any result or change in my illness, I had a remarkabel almost 100% recovery with hiv medication !!! of my infected prostate.This was in july 2009 last year.
All my symptoms where gone!!! in 2 to 3 days after I started taking the hiv medication cocktail !! (symptoms I had for years and years and wich became worse and worse over the years) The medication was a cocktail of Isentress,Norvir,prezista and Intellence.
The reason of this treatment was an unsafe sexual contact, so I went to the University Clinic in Gent where they gave me this treatment for 1 month as a precaution/prevention of a possible hiv infection.
After this one month treatment was finished ,all of my symptoms came back.
I had some pills left, so I tried again, but in 4 times lesser dose, and yes again my symptoms disappeared.

I went to my dokter, my urologist and the doctor of the University Clinic with my story.
I told them there was a connection between the medication and my so called non-bacterial prostatitis.(virus, xmrv?)They where in disbelieve and dismised me!!!!????
Not having this medication anymore, turned my life back to a living hell !!
April the 1 th 2010 I read on the internet the article of Ila Singh, M.D. Ph.D. That they probably found connection between retro virus infection in prostate and possible treatment with hiv medication.
The medication worked for my horrible illness that destroys my life on all levels, and i really hope there will be a solution very soon. I would rather live my life with the medication, that make me symptom free and gave me back my life , than live in hell 24/7
Two weeks ago I took the xmrv -test that is brand new at http://www.redlabs.be/ in Zellik Belgium a lab connected with http://www.vipdx.com/ that does the European tests.I should get the results in 4-5 weeks.
Kind regards
 

cigana

Senior Member
Messages
1,095
Location
UK
Hi moving3,

I find your story very interesting, thanks for sharing with us. It could be a very important clue because XMRV does have a propensity for the prostate.
Please update us on your XMRV test results - if positive I will bring this up on a prostatits discussion group (yahoo).

All I can think to suggest is have you tried natural antivirals? Taking plenty of quercetin also reduces my prostate pain.

best wishes,

Cig
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
moving3, a few questions:
Except for the other prostatitis symtoms, do you also suffer CFS? You didn't mention that.
Did you ever had temperature, how did you suspect you are infected with a virus? I also have prostatitis/CFS but never had temperature, so I guess I'm not infected with virus.
Are these HIV meds expensive ?
 
Messages
8
Location
belgium
Hi Svetoslav,
Mild cfs syptoms
No never have fever (temperature)
You can't have hiv med without precription.
The hiv meds are extremely expensive ( 3000 / 3500 Euro per month ) if not covered by insurance
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
Hi Moving3, my husband is going through the same problems you went through (about 4 years now). It is interesting that the antiretrovirals are working for the prostitis. We are still waiting for enough money to take the XMRV test. With your story, I am wondering if we should borrow some money and he should get it first. He has been having so many problems and pain. He has used all the prostate medicines, tons of antibiotics etc. and nothing is working. He often has blood in his urine also. And he has already had some surgery. I am wondering if it will even matter what the results of an XMRV test would be though because we live in a small town, have no money and our chances of getting antiretrovirals is slim. Have you gotten a PSA test? Was it elevated? His was but his doctor said she wanted to wait until the swelling went down to do another PSA or biopsy or he can get a false positive due to the swelling. I am getting extremely worried. I hope she has some idea of what she is doing.

One more thing I wanted to add that is a little strange. I worked with someone who had the exact same prostate problems and his wife has FMS and Ehlar's Danlos Syndrome (Don't know if I spelled that right). I also know of someone else who has CFS whose husband has prostitis. I think the connection might not be just prostate cancer, but also the swelling years before??
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
Wow that's crazy. I never knew hiv medications were that expensive. Thanks for answers and I really hope you have a change to have treatment with these medications again. If you do, please write again here so that we will be aware too.
 
Messages
8
Location
belgium
Hi Myra
No psa levels are normal.
Went again to clinic and dokters with my question of having the medication again or if they could at least do some research on why it works for prostatitis.
They, after they had a meeting arround it gave me an absolute NO.
They literally said : even if it works, it is only for hiv treatments. They even refused doing some research on it. They just said live with it !!!
I thought the medical world was here for helping people !!! Lost another illusion, and with all of this also my quality of live
 
Messages
8
Iv had ME/CFS for about three years maybe a little more. Had a positive MELISA for lyme and bartonella. EBV, HHV6 also active a year ago. Recently I became afflicted with cpps or something like that. Urinary problems, lack of sensation in penis, tingly feeling in there. While this has happened my me/cfs has went into remission of some sort. Migranes, jaw ache, liver pain, fatigue, muscle pain and brain fog. Its all really calmed down. I do feel really depressed though
 
Messages
8
Have you had EBV, CMV, HHS6 tested?

Have you used any other anti-virals and if so did they help?

This study shows that Isentris is good for all herpes viruses.
http://www.sciencedaily.com/releases/2010/09/100923081859.htm

Also, have you ever used Saw Palmetto, Accutane, Propecia, Finasteride, Proscar, etc???

Hi yes iv had them all tested and have shown to have HHV6 EBV. No iv never took them drugs but know what they do. Is that what you took? Have you found anything that helps these genital issues