When will an answer be found ???

All these things you guys mention seem to be pretty similar to many stories I've read. Go to the doc, get treated for a uti that often doesn't show up in lab tests. Start anti biotics, begin feeling worse, anti biotics make no difference, weight loss, anxiety, depressiom, dozens of medications all of which are often guess work and have terrible reactions, some cope well, others don't. Patience is am under statement. I have cut out nearly all known irritants from my diet without much success. Others swear by it. Keep trying new things, everyone Daus you will eventually find something that helps.

Hi strandisemol check out this website as it has some really interesting stuff on it that might help you with your intolerance. I've been reading the stuff on the Self hacked website for a while and alot of it makes sense. Give it a go it can't hurt.

http://selfhacked.com/2014/05/04/elimination-diet-safest-foods-people-sensitive-everything/#Proteins

morning Strandsidemol, sadly nothing you or others hav suggested seems to be working, I am in a major flare again. The burning is awful, I dont think unless you have this rotten thing anyone can really appreciate the desperation you feel. You just want it to stop, you will try anything but most things seem to make it worse. I am even wondering if it is the Oxybutinin that has caused this flare.

Hope you are feeling a little better.
T.

well the story continues. Yesterday to appease my GP I went and saw a Gyn/Uro

During my 20 minuets discussion I raised Prof Marshall and how lucky we are to have him looking into IC and had the doctor heard of this ? Blank stare, I raised Ozone therapy - blank stare and - oh that is a bit of a fad. I raised long term antibiotics - blank stare and oh that will give you Candida. I raised stem cells - blank stare and Oh not proven and that is years away.

Then - oh I can recommend the "Mona Lisa therapy", now it was my time to give a blank stare. It is a treatment using a laser in the vulva and vagina for 10 minuets - cost $500 each visit, and you need 4 and then at least one "top up" a year. Reading the reviews there are as many negatives as positives, even if it was affordable. I left feeling as sad and frustrated as I always do visiting specialists. He did offer to put me into hospital and put me to sleep so he could have a good look around "down there" but to be honest after what happened 3 years ago I would be to scared they would do other treatments while I was asleep and not able to say no.

So what next ? I think nothing but put up with it until Prof Marshall comes up with some ideas. I am taking Lauricidin, it has great reviews and is a suppliment rather than a drug, and the first thing to at least reduce the burning, and is supposed to build the immune system.

Sorry if this is not the sort of thing that should be on this forum, but I wanted Prof Marshall to know just how I am feeling and how we are treated, as I know I am not the only one who is frustrated by current treatments or should I say lack of treatments

Hang in there Tina... this (whatever it bloomin is) makes you feel like your going crazy, its frustrating, confusing and debilitating. All doctors are the same, its not thier fault as such because they just dont understand it, if they dont just think your an hypercondriac with nerve and other mental related issues, like my doctor does. This is to the point that i decided months ago to never go back and see him. So now i have no private doctor because she just took my money, took my research contacts off me and never replied back to my email after she left me frustrated by saying your a confusing case (basically couldnt find enough evidence of a biofilm infection)
We are trying to find ways to help ourselves or try out torturous procedures.
It makes you feel down to point of suicide sometimes, this is through constant exhaustion, pain and discomfort everyday from the minute we wake. Its crazy no one should go through this.
I pray to god an answer is found asap and we can get to try and salvage some of the life this horrid condition has taken away from us.
Tina im refusing to have no more torturous procedures done, it doesnt make people better they still have it and majority of people i talk to makes them worse, so yeah im not stupid not working with those odds

Hi Stransidemol
Thanks for that, your right its just not fair, and if the docs dont know why not say so. You know yesterday I was told my appointment would be $160, when you are retired that in its self is not easy, but when I went to pay they wanted $360, apparently because the doc wanted to look "down there" - which I would have thought would be part of the consultation, I got hit with another $200.

As for the $500 a time Mona Lisa forget it, I am simply not risking it especially after reading some of the reviews, I agree no more invasive treatments until someone can prove to me it will 100% fix things.

Hi Stransidemol and Dan how are you guys doing ? I am still taking the Lauricindin, not causing any side effects so that is a good thing, it is supposed to help with maintaining good gut flora so as Probiotics made me flare I will stick with this and see what happens. Have now started D Mannose, interesting some sort of sugar, but little is absorbed by the body it is manly past out of the urinary track, but it collects and takes the bugs with it. Read many great reviews so just starting to give it a try. No negative reaction yet except for last night and I think it reacted to Hiprex so will stop the hiprex as it is another chemical. Burning is still bad around the vulva but the pressure pain has eased a little, and I must say my head does not feel like it is in a fog. Have to keep trying different things ourselves as there is nothing new in doctors box of tricks. I put this up here just so others can see what I am trying and how I react as it might help one of you while we wait for the magical cure.

Hi Tina so glad you doing this, has it helped?
I now finding when i stick to raw juice diet i am much better i am eating raw too at minute with some fish. Its mainly salads and raw veggies. I have been reading that some people are looking down the bartonella route, their symptoms sound like mine. I am still taking the lauracidin, i eat coconut oil too, oil of oregano, vit d3, probiotics etc

Hi Standsidemol, hard to say LOL its like my body is at war with what ever this is, it seems to tolerate things for a while then fights back.
I dont think I can cut out much more of what I eat and it is hard when you have a husband to feed. We eat good food, plenty of salad and veggies some of which we grow ourselves. I have cut out as much salt and sugar as is possible to cut.
I bought a "pedal" machine. I find the more I walk the more I need a toilet so now I can sit on a chair on the back patio and just pedal. To start 500mtr killed me but now I am up to 2km a day. So trying to keep as fit as possible..

It all helps Tina. For me im being driven nuts by knowing just what it is thats wrong, i dont accept ic you dont just get ic or whatever on earth that supposed to be, there is something much more begind all this. Lyme maybe, leaky gut,sibo candida issues makes me wonder if that could be why prof took it on board as related to gut. Truth is im finding more and more of us coming through finding differentbthings that give the symptoms how on this earth is anyone going to prove theres no ic, its a miriad of diff symptoms, we are all different and in each of us its sonething different. So confused i need to have a break.

All I know is that I cured the candida I had for 20 years against all medical advise I took Fluconazol for 18 months every day and now it is gone and staying gone. Now I am going to find a way to kill this bladder issue, dont know how yet but a good start is trying to get my body more healthy, removing salt and sugar and spicy foods. All I can do is give the bladder a hand to fight what ever is causing all this inflamation.
I just wish doctors would listen to us, we live with this horrid thing, if we have an idea then support us . I would really like to try some Hormone medication, but no one will give me any, only cream that makes things worse.

Have you thought of any naturals for hormones like dong quai or black cohosh?

Stransidemol I have sent you a PM

Dan, have you tried D Mannose ? If not give it a try, it is starting to help me

Just replied hun... i am elated for you xx