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Dear all,
I have been reading Dr. B's blog posts, as well as some old threads on this site, and am beginning to get my head around the various causal influences of IC. What I am still struggling though with is numbers - millions of women take the birth control pill, or HRT, for example, but only very few come down with IC. I know that IC is clearly multi-factorial - what is the specific combination of factors that causes it? Has anyone thought about these issues with respect to their own case? I know that this knowledge will come with time, for me, but am interested to hear other pepple's thinking, especially if they are further progressed in their treatment.
Causes
I believe that IC might be genetic. The ICA just posted a study they did on twins and it is looking like they think it could be due to genetics. I think you can have a certain gene predisposing you to a certain illness, but something has to trigger that gene. Maybe in some people it is the birth control pill or hormone pills. Other factors might trigger the disease for other people. It's hard to say. I have been thinking this for a long time. My paternal grandmother had a lot of the same other issues, like IBS, etc. that IC people have. I don't know if she had bladder problems. My cousins on my dad's side also had problems, especially my girl cousin who had a lot of bladder problems similar to IC several years ago. There are probably many things that trip IC off, but maybe you have to be genetically predisposed in the first place. For instance, my neighbor lady has the Braca 1 gene for breast, uterine, and ovarian cancer. Her mother and sister died of that cancer, and her daugher was diagnosed with breast and ovarian cancer when she was in her 30's. My friend, however, has not gotten cancer even though she knows she has the gene. She and her daugher were tested for that particular gene. It is all very interesting and puzzling, to be sure. These are my thoughts on the subject.
genes. some thoughts.
They are neither necessary nor sufficient in the component cause model. If it was necessary--than you couldn't get the disease without it. If it was sufficient, the gene by itself would cause the disease. There have been a multitude of studies on genes (which are DNA sequences that code for particular proteins, which in turn are the building blocks of many many things); and ability to code for enough or any of a certain protein can be influenced by nutrition. The same goes for epigenetics--how your genes are expressed. Again, diet and nutrition influence them.
So, while it may be "genetic", as in some of us (me included), its not usually just our genes. Genes are generally part of a larger causal pie, except of course in the established genetic disorders--huntingtons, etc, where you do or do not have a particular sequence.
I can't find the twins article. Can you post it?
A note about BRCA--its a mutation in a tumor suppression gene; and they say 60% of those with it, end up getting breast cancer. However, that statistic comes from epidemiologists who study families. Families don't just share genes, they share habits!! There might be others out there who have it and don't get it.
These are just my thoughts, plenty disagree with me.
I agree that we'd need to be
I agree that we'd need to be predisposed to it in order to get it (we all know people who, for example, take bcp, drink coffee and alcohol, take hrt, etc, and who haven't got it). I think Dr B is right in focusing on the triggering events as the more proximal causes for IC, in her treatment. I think that these, and their reversal , in terms of building up the immune system, etc., are key. I guess it all comes down to immunity - even if you're predisposed, the immune system should / will protect you. Same for all diseases. I see that as Dr B's real legacy - and she is spot on.
Causes
If a strong immune system is the answer, then you have to wonder about people like athletes, who eat right and are in excellent shape, and still get diseases like cancer. Maybe there is something else to it as well?
Not necessarily - my mother
Not necessarily - my mother was an Olympic athlete but from the age of 45, she's been the sickest person I know! Health really does seem to be a fluid state, and a strong immune system is not necessarily strong all the time (ie, when we are ill!).
Maybe
While I was never an olympic athlete (not even close, ha), I was a long distance runner when I got IC. In fact, I got a UTI which started the whole IC ordeal when I was driving back from running a marathon. Life is funny like that. I don't think athlete's are that much healthier than regular people. Exercise can only do so much, food and other lifestyle choices matter just as much. I have hung around a lot of athletes, and a lot (not all), depend on sugar and energy drinks for fast fuel (myself included). However, many of these same people have many health problems despite running extremly long distances everyday (missed periods, teeth infections, etc). I think the healthiest people I know are the ones who do yoga and other stress-relieving exercises while eating right. Soooooo, moral of the story, the tortoise really does beat the hare (because the hare passes out before the finish line).
Causes
You have a good point, MelBell.
I have many thoughts on this
I have many thoughts on this but here's a few- I think people have genetic weaknesses or predispositions in parts of their bodies. My sis (the one who has IC) and I are full sisters and our older sibs are half. None of them have IC and they were all on the Pill so we assume the weakness was passed down our dad's side. He just had small intestine cancer (the small intestine is where Dr b thinks this starts right?) Anyway- the older sibs don't have IC BUT they have anxiety, depression, insomnia, menstrual issues, allergies etc all in varying degrees. I never have had issues with anxiety, depression (well till this IC beast came out) allergies or anything. I feel like you just can't ignore IC but you can act like it is "normal" to have all the other stuff so many people have and take whatever drug bandaid there is to cover it up. SO I feel like there are predispositins and then you assault the body with toxins, hormones and abx at every turn and you end up with some damage somewhere. We are the unlucky ones (maybe) whose bladders rebelled against the onslaught. I say maybe because I truly believe that because I am working so hard NOW I wil have a much healthier future than many people who can ignore their sinus infections/migraines/fatigue whatever. Not sure if that makes sense- hope so!!
Chronic illness is everywhere- some of them are just easier to "live" with than IC.
Lucky for us we have someone who is so super smart and dedicated to getting us better!
And I am even having a bad day and I am saying that.
Causes
The doctors aren't even able to diagnose most of the "diseases" of today. My younger son has all the same additional symptoms, like IBS, reflux, constipation, etc., but he does not have IC. My oldest son has IBS problems, fatigue, and epilepsy, but he doesn't have IC. Perhaps it is all the same disease but manifests itself differently in each of us. My younger son has been to tons of doctors, both conventional and alternative, and none have been able to pinpoint what is making him sick.
Clueless- have you tried any
Clueless- have you tried any gut healing with him?
I agree with you about it manifesting different in each person
Causes
I have have spoken to him and tried to get him to do a cleanse for yeast, but he doesn't last long on the diet. One conventional doctor and a oriental medicine doctor told him he has yeast problems. He can't seem to stick to the diet long and neither doctor put him on a cleanse for it. I think that is a lot of his problem. He is an adult, so I can't do anything more than suggest. Neither of my sons will do the diet. You know that saying, "you can lead a horse to water, but you can't make him drink."