What Causes IC?

[redizhere]

sorry didn't know which section to post this...I have heard so many therories over the years it makes one want to pull their hair out..allergies, ph levels, food sesnitivities, kidneys, small adrenals, bacteria, repeated infections, etc etc...do you think they ever will really know? I know if this were a mans disease they would have a cure already!! Are they(the scientists or whoever) trying to figure this out>? thanks xoxo Red

[tigger_gal]

They have to many theory's and not enough answers.. kinda like tomany chiefs and not enough indians.... I am hoping that one day they will find a cure, but, I am sure it won't be in my life time...
Brat

[VickiB]

I'm hopeful! Just thinking about the advancements they've made in medicine in my lifetime so far (and I'm not all that old!) makes me optimistic.

I believe I will see a cure, or at least a treatment with high degree of success to eliminate the symptoms.

Vicki

[redizhere]

yes I believe we create our reality with our thoughts and I am going to manifest they find a cure and soon!!!! xxooxox Red

[diane57]

I also believe very good new treatments, if not an outright cure, will happen very soon - probably within the next 5 years. In part because there's suddenly a lot of publicity about IC - new articles, advertisements for Elmiron, mentions on the radio and TV, and more people will be aware of it, and then more people will be diagnosed. Since the estimates of IC patients in the US are anywhere from about a million to maybe about 20 million people, the big drug companies will start to see what a big old cash cow a really good treatment will be, and they'll dig in with gusto and do lots of research. (And there's already a lot of research going on...) Also I think it's helping that more men are getting diagnosed with IC when when they used to be diagnosed with chronic prostatis - many doctors now think it's the same disease (in the absence of an infection). And for some reason when men get a disease, more people sit up and take notice than if it's just "female problems", and men maybe are more vocal and demanding and will push the researchers from the patient end of things, and they won't be written off as much as female patients are.

When I swallow my Elmiron and have blueberry juice instead of OJ, in the back of my mind I'm thinking I am just biding my time until the new really great treatment becomes available, and I honestly believe that will happen relatively soon. The discovery of APF was really groundbreaking, and the researcher who discovered it says that now it's just a matter of blocking or neutralizing APF, and she thinks someone will figure that out soon. I HOPE I HOPE I HOPE....

[ICLori]

I'm really excited by the new research, too! They are doing studies (test-tube I think, not on people yet) with the heparin-binding epitheliel growth factor stuff (HB-EPGF) that they think might counteract the APF.

That's smart that you drink blueberry juice, that has the same active ingredient that cranberry juice does, only I've heard it's less acidic. So it would help prevent any bacteria from making the IC worse. UTI's on top of IC are no fun. I've had a lot of problems with that, with my bladder having some bacteria that was killing me but somehow not enough to justify the doc giving me antibiotics. Shrug.

I need to look into drinking blueberry juice every day I think. I didn't even realize they made blueberry juice. Can you buy it frozen, too? (I prefer to buy the frozen juices then make it up.)

Blessings, Lori

[diane57]

"Heparin-binding epitheliel growth factor"? Sounds like something from a science fiction movie LOL. And I love that it has an acronym, sort of like R2-D2. Whatever it is, I love it already and am mentally sending it encouragement and best wishes...

I buy 100% pure blueberry juice at Trader Joes, and there's another company (I think Knudsens) that makes it too, you can find it at health food stores and some grocery stores. It's outrageously expensive (like $4 or $5 a quart, ugh) but I justify it because I'm spending no money on sodas, Starbucks or other juices. It's pretty tasty and I'm glad to read it strangles the bacteria.

[ICNDonna]

We have blueberry bushes so I make my own blueberry nectar --- it's delicious. We also eat lots of blueberries just plain.

Donna

[Martha13]

wanted to let you know that since many of us believe bacteria are a big factor in the cause of IC we are doing research on it as we speak. We just acquired a microbiologist from Canada who has already done much research on E. coli infections. Now we will look at Enterococcal infections. One is a Gram negative and the other a Gram positive so there are some differences. One is that it does not take a huge number of colonies of Enterococcus to cause an infection. However, most labs do not even culture extensively enough to find Enterococcus, or if the they do, they dismiss it as a "contaminant".

While many apparently have Enterococcus in their bladders, not all develop an infection. The same is true with H. plylori and ulcers - it is found in many but not all have an ulcer. Bacteria would explain why "IC" symptoms can strike at any age, just like a UTI. Bacteria can easily get into the female urethra and then the bladder. (Notice that males do not have as many UTIs.)

Bacteria is there and does not cause a problem until there is a trigger or trauma - like an operation, childbirth, etc. Also, the decline in hormones affects the tissues of both the vagina and the bladder. Our best protection is the flora in the vagina and if that changes the bacteria can cling to the wall and persist. Birth control methods can affect the flora also. We will probably find there are many different triggers, and the body's immune system is also a factor so some treat the underlying problem and get better. Antibiotics, targeted for the right bacterial species, are key also.

We do not know of others researching this. Hopefully they are, but the key is identifying the bacteria in the first place and it requires an extensive culturing technique. We have used the broth culture and the PCR (molecular device). The 24 hour agar-plate does not always find slow-growing species, but the commercial labs like it because it is fast and cheap. United Medical Lab in McLean, VA will do broth cultures. Treatment takes several months since the infection has been there for years for many. Would that it were found in the beginning!

As a patient I always wanted to know that research was going on and so am letting you know that I have sponsored this and hope it will prove fruitful. We certainly can find the bacteria with the above techniques. Now we will look to see if it invades the cells and persisits.

Martha F

[emilyrose197377]

I Am not sure causes ic they have meany thoeries. I wish they had a cure. I have two bladder diseases Neurogenic bladder/ Intersital cystitis.