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 When will an answer be found ???

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Tina2



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

PostSubject: When will an answer be found ???   Mon Feb 15, 2016 1:45 pm

I am now 68, have had IC for over 20 years. Live in Australia and find doctors have little understanding of IC and have a set list of treatments. If the treatment does not work you are very much on your own.
Started with inflammed red raw vulva, nothing worked to fix it. Eventually the tip of the uretha became very tender, then the pressure pain started in the lower abdoman quickly followed by frequency, urgency and swollen stomach.
Have had 3 cyscoscopies, all with the same answer IC. Then I had a hydrostention done, OMG NEVER again, the pain for 3 weeks was unbarable. Since then symptoms have been cronic. My GP said to try 150g of fluconazol immediate result was symptoms disapeared, sadly only lasted for 3 days. Then put on 50g of Fluconazol along with 10g of vesicare, worked really well for 18 month but now the effects have worn off. Tried Nylstat but didnt work. Tried Endep made me flare, cant afford Elmeron so trying Marshmellow root, but can only take very limited amounts 1 capsual a day as it makes the frequency worse. Now trying Bio Balance probiotics which are helping with the non stop burning, but oh what I would give to turn off the feeling of always wanting to Pee 24/7.
I am convinced IC has some form of bacteria causing all these problems and currently trying to find a lab in Aus that will do PCR Level 2 test for bacteria, in the hope I can find a doctor who can then treat the bacteria. Other issue is cost we are retired and on limited income so $500 to send samples to the US for testing is going to prove difficult. Unless you have IC you can not understand how this takes over your life. Traveling in the car is awful I can actually feel my bladder moving and shopping trips are planned around where toilets are. I pray every day someone will come up with a cure, PLEASE. So grateful that you are now trying to find an answer for the thousands of us that suffer from IC Thank you
Forgot to add I take zertec 1 every day, I find antihistomine to be a help with the pressure pain
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Tina2



Posts : 149
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Location : Queensland Australia

PostSubject: Re: When will an answer be found ???   Tue Feb 23, 2016 6:50 am

Here is a current list of what has been found in other IC sufferers using PCR Level 2 tests. These results are from a very small group of people who have had the tests done.
1. Ellajoy - Ecoli - BROTH CULTURE
2. Jillna- Ureaplasma -PCR
3. Clippersgirl - Ureaplasma + Mycoplasma - PCR
4. Molmol - Staphylococcus epidermidis - MICROSCOPY
5. Susan987 - Proteus Mirabilis - BROTH CULTURE
6. Danceronice - Ureplasma -PCR
7. Buttonpushergirl - Ureaplasma + Mycopasma -PCR
8. Mybladderhurts- Enterococcus + enterobacter + Klebsiella + Citrobacter - PATHOGENIUS
9. Nouveaustyle - Mycoplasma -PCR
10. Thoover- Enterococcus + Strep - BROTH CULTURE
11.Sylviadame - Mycoplasma -PCR
12. Niki1994 - Ureaplasma -PCR
13. Jamie83 - Ureaplasma -PCR
14. DMH2015 - Ureaplasma -PCR
15. Meowciao - Ureaplasma -PCR
16. Roquejose - Ureaplasma -PCR
17. Zapola - Ureaplasma -PCR
18. Dezbk - Ureaplasma -PCR
19. Mbs123 - Many different bacteria -PATHOGENIUS
20. Reen28 - Ecoli and proteus mirabilis - PATHOGENIUS
21. Elynz - EColi and Strep - PATHOGENIUS
22. Lily208 - Ecoli + Enterococcus - PATHOGENIUS
23. 2238colleen - Ureaplasma -PCR
24. Pat1955- Candida + Lactobacillis - PATHOGENIUS
25. Marie-5 - Ureaplasma-PCR
26. Iweusebsti - Ureaplasma-PCR
27. Heatherland - Enterococcus - PATHOGENIUS
28. Justina1 - Enterococcus + Ecoli + Staph+Corynebacterium+Prevotella+Veillonelta+Propionibacterium - PATHOGENIUS
29. lweisenstein - Ureaplasma -PCR
30. Nikig1- Ecoli+ Lactobacillus kalixensis +Lactobacillus gasseri +Corynebacterium imitans + Corynebacterium pyruviciproducens + Corynebacterium amycolatum + Aerococcus - PATHOGENIUS
31. RBX- Eoli + Propionibacterium + Enterococcus + Staphylococcus epidermidis + Strep group B & D- BROTH CULTURE + PATHOGENIUS
32.ElynZ- EColi + Group D Strep + Entetococcus = BROTH CULTURE + PATHOGENIUS


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Tina2



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

PostSubject: Re: When will an answer be found ???   Fri Mar 11, 2016 2:24 pm

In total desperation I have now found a lab in the US that will accept urine and swabs for PCR Level 2 testing for inter national patients ( not cheap), . So much being said about this that we all have bacteria and the Level 2 PCR is so sensative it will always show some bacteria, but I am just hoping it might show something that should not be there or raised levels of something I guess I need to confirm I am not going mad and this is not just stress as several doctors have tried to indicate, that I am stressed and this is root of my problem.

I am sick of feeling like I need to urinate all the time and seem to have lost all my energy. This IC or what ever it is, is destroying my marrage and my life. Will let you all know if anything interesting comes back in the tests.
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Strandsidemol



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Age : 38
Location : Leicestershire,uk

PostSubject: Re: When will an answer be found ???   Tue Apr 05, 2016 1:49 am

Tina, how are you doing now? X
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Tina2



Posts : 149
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Location : Queensland Australia

PostSubject: Re: When will an answer be found ???   Tue Apr 05, 2016 7:01 am

Hi Strandsidemol. Well tests came back from US positive for high levels ecolie. Saw GP gave me Keplex, first course was a generic brand and took the edge off, repete was a non generic brand and made me so sick I could not finish the course. GP said as the first course didnt work it is not bacterial (despite the evidence it is) and stopped the Keplex, again despite all the evidence I presented that said it can take months to kill off the bacteria. Now been given a referal to yet another Uro/Gyny so more money to find I just dont have. Also given Oxybutynin, it worked like a dream on the frequency, but the side effects were so bad I stopped after day 2. Violent headache, vomiting, racing heart, awful.
So back to square 1. Everything is so expencive, stem cell treatment in the US is around $6000 per treatment so that is a no go as well.
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Strandsidemol



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Join date : 2016-02-15
Age : 38
Location : Leicestershire,uk

PostSubject: Re: When will an answer be found ???   Wed Apr 06, 2016 1:32 pm

Hey, oh bless you.

My broth culture came back - nothing detected but staph epi which i keep being told over and over is a skin contaminant... i was told im a puzzling case. Dr given me lots of things to try until we can get the pcr test ordered. Hopefully should get some more answers then.

I tried the oxybutinin and they had horrible side effects in fact most of the treatment my gp given has been awful or torturous, my new dr and biofilm specialist is thoughtful and compasionate, working with me to help find answers as to whats going on with me.
What naturals/supplements you tried?
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dantheman



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Join date : 2016-04-04
Location : Adelaide

PostSubject: Public awareness is crucial through media and radio   Thu Apr 07, 2016 6:17 am

Tina2 wrote:
In total desperation I have now found a lab in the US that will accept urine and swabs for PCR Level 2 testing for inter national patients ( not cheap), . So much being said about this that we all have bacteria and the Level 2 PCR is so sensative it will always show some bacteria, but I am just hoping it might show something that should not be there or raised levels of something  I guess I need to confirm I am not going mad and this is not just stress as several doctors have tried to indicate, that I am stressed and this is root of my problem.

I am sick of feeling like I need to urinate all the time and seem to have lost all my energy. This IC or what ever it is, is destroying my marrage and my life. Will let you all know if anything interesting comes back in the tests.

I think the best thing about this forum being organised by Antonina and Prof Marshal is that they will most likely read our stories and get a much deeper understanding how bad this thing realy is. It is a crying shame that so many people suffer so badly yet unles you have this disease no one knows about it. Public awareness is zero. My GP of 45 years had never heard of it.
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Tina2



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

PostSubject: Re: When will an answer be found ???   Thu Apr 07, 2016 7:58 am

Dantheman, for me the worst thing is the "attitude" of some GPs, as soon as you tell them you have IC they look at the floor and say - Oh Dear that is very difficult to treat. They do the basic tests, and offer the same old things that have never worked and then you get - Look I am sorry there is nothing more I can do to help, here go see this Uro/Gyny. It is just a roundabout, you know what is coming, and you feel very much alone. The other issue is cost, many of us cant work because of this condition so we dont have money. Twice now I have been told by specialist well if you dont have the money for X or Y then sorry I cant help you.
Talking about your bladder is not exactly dinner coversation, so it is hard to explain to people why you need to keep going to the bathroom.
There are also so many varients on this illness, and to me it makes logial sense that is because it depends which bug you have, each but has some symptoms that are the same but then each bug has its own distict symptom as well. I am SO happy Prof Marshall and his team are here to help us, at long last someone is willing to look outside the square and hopefully find an answer.
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dantheman



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PostSubject: Re: When will an answer be found ???   Thu Apr 07, 2016 8:18 am

AS a minimum he should push for better comprehensive microbial testing.
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dantheman



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PostSubject: Re: When will an answer be found ???   Thu Apr 07, 2016 9:02 am

Bug, virus, autoimmune, psychological, neurological and dozens of other theories. One thing is for certain. I worked from the age of 14 in many of my own businesses that grew from the ground up. I never took sickies even working through pneumonia. I never imagined after having worked so hard for so long i would get knocked down by such a chronic disease. I guess I'm lucky in a way that i kept working for a few years when the symptoms first started. It was a case of blissful ignorance for a few years. May be even 5 years. But it did progress and get worse on its own. I don't know what if any thing could have changed if I'd seen someone sooner. They probably would have put me on meds that often don't work and make you very sick. I ate well, excersized 3 times a week, spent time coaching soccer for my son's but when this thing hit it hit hard and every thing stopped.
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Tina2



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PostSubject: Re: When will an answer be found ???   Sun Apr 10, 2016 5:09 pm

dantheman, I understand what you are saying, and I am really starting to wonder about this Lyme connection. My symptoms started after I was bitten. It all started with horrendous inflamation around the vulva, and bladder spasam that sent awful shooting pain down the uretha, anwhat I thought was a uti, that didnt show up infection but despite all that I kept working.
Then after they did the hydrostention the frequency, urgency and swollen stomach became so bad so fast I had to stop work.
I know for a fact that the hydrostention left cracks in the bladder as I past blood in the urine for almost a week after the hydrostention was done.
Question in my mind now is, did that Tick introduce an infection and did the hydrostention then allow that infection to become inbedded in the bladded.
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dantheman



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 11:50 am

Hmmmm can you get your bloods checked for lime disease.
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Strandsidemol



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 1:52 pm

You can do elisa and western blot but not accurate. There is armin labs in germany where you can send your samples too, need a dr to sign it off for you. Armin test for lyme and lyme co infections. Can get very pricey to test
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Tina2



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 2:15 pm

yes it all comes down to money which is so sad really
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Strandsidemol



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 2:18 pm

Drives me crazy too... no price should be put on health but you know my views on that anyway!! I fear i can see me getting into serious debt and then still never be cured Sad
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Tina2



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 2:37 pm

You have to be careful of people just out to make money, by offering alternative treatments with no firm basis. Now retired I have to accept there are limits to what I can afford. We have to eat, we have to pay utilities, then we can look at what we can or cant afford on top of that.
It is so wrong, that people with money can get access to far more treatment than those with limited funds
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Strandsidemol



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 3:02 pm

I know its very unfair, its a very capitalistic world we live in. Im not like that, i am very much a socialist. I would love nothing more than to try and find the answer to make everyone feel well again
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Tina2



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 3:17 pm

Well maybe God has sent us Prof Marshall and his team because he knows sick people rarely have money. Surprised
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Strandsidemol



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PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 7:48 pm

Praying to god everyday he can work out whats going on with us. Got another email back today from dr a and im even more confused why i am getting these symptoms... its driving me insane all of this. Im kind of wishing i had a biofilm infection because the worst of all this is not knowing Sad
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Tina2



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Location : Queensland Australia

PostSubject: Re: When will an answer be found ???   Mon Apr 11, 2016 8:11 pm

I agree Strandsidemol, looks like I am going to have to change GPs - again. I tried to talk to Dr today about Prof Marshalls work and he just brushed it off as nonsense and when I raised Lyme he could not get me out of his rooms quick enough.
I think we all know what we have got - a very unhappy bladder the question is WHY surely its not to much to ask, to not want to run to the toilet all day long and as soon as you have been to the toilet to need to go again and again. Its enough to drive a person insain.
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dantheman



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PostSubject: Re: When will an answer be found ???   Fri Apr 15, 2016 2:53 pm

Hi Tina. I was diagnosed with non specific inflammation. Every day i ask myself what does this mean. Why is my bladder inflamed. Why can't they work it out. I'm burning in here let me out.
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Tina2



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PostSubject: Re: When will an answer be found ???   Fri Apr 15, 2016 6:31 pm

Non specific is doctor speak for - dont know. all we want is some one to listen and support us in what ever way they can, but it is this open admission they dont understand IC and cant help, so they need to move on that really hurts.
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Strandsidemol



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PostSubject: Re: When will an answer be found ???   Fri Apr 15, 2016 8:00 pm

I really hope he gets some answers for us all soon. My body is giving up on me now, i feel a complete mess. I had terrible sickness and pain in kidneys but doctor did sample test and once again no wbc, no inflamation, no bacteria. Im a puzzle to him and he is now refusing to help me. Sad
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Tina2



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PostSubject: Re: When will an answer be found ???   Fri Apr 15, 2016 8:10 pm

Ah Strandsidemol I wish I could give you a hug. So sorry you are feeling so rotten. What is wrong with all of us ? What is causing this ? So you are getting the same treatment as I got, sorry to hard go see someone else.
I am still battling with the Oxybutinin, up to 3/4 of a pill a day now I am so desperate for "something" that will help.
I wonder if Prof Marshall put up a simple list just tick yes or no if you have this symptom would help him.
I had the burning around the vulva undercontrol ( still red raw but not burning) for a whole week now it is back. Then there is the fear if the flare gets really bad after hours where do I go for help, the hospital is a good 39 minuets away, and what can they do any way not much.
are you sending urine samples to the US for testing ?
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Strandsidemol



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PostSubject: Re: When will an answer be found ???   Fri Apr 15, 2016 8:17 pm

That might be a good idea for them to do Tina.
Im getting food intolerances left right and centre now, i ate some chips the other night and it made me so poorly, the stinging, burning, i was being sick and had the other symptoms (not nice at all) but im so hungry... i have now lost over 2 stone. Im seeing a dietician in a bit and she looking at doing a kickstart programme, starting with a 10 juice and then re-introducing foods slowly. I told my dr that my monthly are so heavy and the pain is unbearable but he just dismissed it and gave me a week of cipro for urine stinging and burning without even having had anything turning up in my sample... i really am at my wits end and losing my whole life Sad how you getting on with those suggestions i gave you? X
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