IC-BPS FORUM
Interstitial Cystitis Bladder Pain Syndrome discussion forum
CalendarCalendar  HomeHome  SearchSearch  UsergroupsUsergroups  MemberlistMemberlist  FAQFAQ  RegisterRegister  Log in  
 
Share | 
 

 Phage Therapy for Embedded UTIs

View previous topic View next topic Go down 
Go to page : Previous  1, 2
AuthorMessage
Tina2



Posts : 149
Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: Phage Therapy for Embedded UTIs   Sun May 01, 2016 10:29 am

Well said IC Queen, Dan is a wonderful and generous person ( though I would be to embarrassed to except his offer)

When the Doc looks at you and says - oh well nothing more I can do to help when he/she realizes you have no more money to throw at them it "really" hurts.

Not only are we battling this horrid IC but we have to battle the medical profession as well. I just hope all those medico's who have been so uncaring towards us all hang there heads in shame when Prof Marshall tells them all this can be fixed, it just took someone caring enough to dedicate there time to the research.
Back to top Go down
View user profile
IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: Phage Therapy for Embedded UTIs   Sun May 01, 2016 3:13 pm

Thank you Tina2, and amen, amen on your comments. I have found that some people love to give to others in many ways and it's OK to accept help....so never say never. You know the docs who make you feel worse when you leave than before you go in because you don't get any "care" from them? That is the worst. You spent ages in horrible suffering and go in for your ever so brief appointment hoping, hoping, hoping....only to be dismissed. Now I was married to a doctor for quite awhile, saw how hard he studied, worked, and cared..and I have had some great doctors, including urologists. To come out of a doctor's office feeling they believe you and they will never give up trying to help is just the best and something we all deserve. I want that and a cure or a darn good treatment for all of us, sooner rather later, as I am clinging by my fragile nails as many others are. Frankly, how do we all survive this? Just a plea to the researchers, help us and please do not give up.
Back to top Go down
View user profile
Tina2



Posts : 149
Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: Phage Therapy for Embedded UTIs   Sun May 01, 2016 8:25 pm

hi IC Queen, I know there are some really good doctors out there, as you say your husband was one of them.
Maybe it's just there are busy and in all honesty once they have tried all the basic treatment and found it didnt work there really is not much more they can do and I accept that, but if they could even just find the time to say they are really sorry, they wished they could help but at this point there is nothing else they can offer I would be totally understanding of that, its just the way most make you feel - oh no not you again.
IC is draining, I had 2 really good days then this morning I woke up and bang it was back with avengence, I have done nothing different, eaten the same things. Its like I have a war going on in my body, good bugs fighting the bad bugs and when they start to win, the bad bugs call in the reinforcements.
I like you pray every day for strength for Prof Marshall and his team that they will keep working to find a cure for us all.
Back to top Go down
View user profile
IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: Phage Therapy for Embedded UTIs   Sun May 01, 2016 9:24 pm

Former husband, and mind you it took me 20 years to find a great urologist and 40 years to find a great family doctor. I have been to the "best" in several countries and have nightmarish stories that would take a long book to tell. A whole lot of that "not you again." I have to block all that in order to survive. Frankly that I am still alive after all I have been through is a surprise to me. Right now I want a cure, later today I might just want to die...depends on how bad it gets. But my mom was the best and predicted so many things for me and she was sure that one day someone would find something to help. Oddly, her only health problems until her 80's were salivary gland stones and H pylori! Pretty amazing who her hero was....she had that for a number of years until Prof. Marshall's cure came along. So that's another reason these researchers keep me hanging on.
Back to top Go down
View user profile
dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: Phage Therapy for Embedded UTIs   Mon May 02, 2016 8:56 am

My dad had stomach ulcers which turned into stomach cancer which he eventualy died from. Some years later Prof Marshal found the pylori bacteria and anti biotics to kill them. His name stuck in my head. This is a complicated disease and US researchers have been working on it for a long time. Their knowledge is large but the treatments are the difficulty. I believe that the biggest problem is the lag between discovery and knowledge then effective treatments. US researchers already know what causes IC but they don't know how to effectively re grow bladder and desensitise the nerves. I describe it as a scatter gun approach. Throw every drug under the sun at it and pray and hope something will work. From what i read in many forums this approach works on about 33 percent of people and the rest live in chronic pain and dysfunction. A side note. I wonder a which point the study is at. I don't think it has even gained ethics approval. It would be nice to know how things are progressing.
Back to top Go down
View user profile
Tina2



Posts : 149
Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: Phage Therapy for Embedded UTIs   Mon May 02, 2016 9:53 am

Hum interesting so both you and IC queen had a close family member with the Pylori virus, is that another connection ? I know my late brother died of "stomach" issues and fybromyalgia, I knew little of my family so that is the only info I have but an interesting thought.
Dan you say the US know what causes IC, is that "inflamation" of the bladder wall or do they actually know what is causing the inflamation ?
Yes I woul also love to know what progress Prof Marshall and his team have made, would be something to give us further hope things are moving forward.
Back to top Go down
View user profile
dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: Phage Therapy for Embedded UTIs   Mon May 02, 2016 12:00 pm

I have read hundreds of studies done over the last 15 years and scientists can follow the progress of the disease at the cellular level.they know that the bladder doesn't regenerate on its own, they've seen it in studies. There are new diagnostic markers being tested as we speak . They know there are many triggers but the end product is always the same, inflamation. working out how to treat and cure is the hardest part as with any disease. How do you convince the bladder to do what it is supposed to do if it has stopped working properly. This is where the difficulty lies. There are hundreds of chronic illnesses and many treatments but none of them are perfect. The trick will be using the body's own chemistry as in gene therapy to try to recreate healthy bladder tissue. Some people are lucky because they can take existing drugs to get it under control without bad side effects. The problem with scientific research is, the more answers they find the more questions arise. A Current study in the US is tying all of this past knowledge together have av read about it here http://www.mappnetwork.org/ they are investigating why some people have chronic fatigue or IBS or other diseases along with IC. Good quality drug treatments are years away.
Back to top Go down
View user profile
 
Phage Therapy for Embedded UTIs
View previous topic View next topic Back to top 
Page 2 of 2Go to page : Previous  1, 2
 Similar topics
-
» Hormone Replacement Therapy
» Response Loop
» Waxing & Tinting home based business - adelaide
» Wish me Good Luck, please!
» menopause..at wits end...any suggestions please?

Permissions in this forum:You cannot reply to topics in this forum
IC-BPS FORUM :: General Discussion :: Research-
Jump to: