IC - Interstitial Cysistis

[Mother]

This subject came up in the fermenting 101 thread but I felt it was getting off topic there so have started a new thread for it here. Perhaps this info will help others who may not even know there is such a disease.

 

Interstitial Cysistis is a chronic inflamation of the bladder that causes recurrent pain or discomfort in the pelvic area along with frequent urination. In some individuals this is extremely severe and dibilitating. The cause is not known though a lot of research is going into this disease. It is often associated with auto-immune diseases and the connection with Fibromyalgia and Lupus is well known. Many medicines and procedures have been tried but rarely help for long. Sometimes the symptoms will go away spontaneously and return just as easily. It is known that some foods will bring on the symptoms but the foods are different for different people.

 

A list of probable offenders and possible safe foods can be found here:

http://www.ic-network.com/diet/dietcheatsheet.html

 

Here is the home page for that http://www.ic-network.com/

 

More info can be found here: http://www.ichelp.org/

 

Mommadogs gave me this link and I found it very interesting. I did have to sign up for the newsletter the second time I went into the article but Dr. Mercola is a well known proponent of natural healing so I didn't mind. He suggests a grain free diet and fish oil but be aware that fish oil almost always comes citrus flavored and citrus can be one of the offenders. (I recently found a citrus free formula at www.stopagingnow.com. )

 

http://articles.mercola.com/sites/articles...09/bladder.aspx

 

Some people use an over the counter product called Prelief but I find it only gives me diarrhea. Soda in water can also be used in a pinch but is not reccomended for those with sodium restricted diets.

 

I have found that Slippery Elm bark powder and marshmallow root powder, in tea or capsule form, helps some but it takes a while to work.

 

I'd appreciate any information some of you might have on this subject.

 

 

 

 

 

[MommaDogs]

I'm looking, Mother, but coming up pretty dry... except for this. It may be legit since it doesn't SOUND like she's selling anything. Maybe worth a shot?

 

cindylew117

Registered User

 

Join Date: Dec 2005

Posts: 5

 

holistic protocol Working for my daugher!!

Hi Everyone!

 

I am very very excited, and I need to share this news with anyone who could benefit from it. My daughter was diagnosed 2 years ago with IC. It has been a terrible 2 years! My friend who is an RN directed us to a holistic doctor in our area. He is wonderful. My daughter went to him last week. She is 16. We were both so skeptical. It has been one week, she came to me today, and told me for the first time in two years. She has absolutely NO PAIN! Not even twinges (as she refers to them) She feels and looks great. This is the girl that has a tutor come to our home because she misses so much school due to her illness! We are praying and hoping. If anyone would like info on this Dr. Please send me a message. I would love to help you! I hate the fact that people are suffering if you really don't have to. It's a 60 day protocol. It's all natural, and you can buy any of these pills at any healthfood store. They are wonderful. Good Luck! Like I said please email me. It is definitely helping my daughter!!!!

http://www.ic-network.com/forum/showthread.php?t=22922

[MommaDogs]

This is a second post from her. Sounds reasonable.

 

Hi Bianchi,

I would be happy to tell you what my daugher is taking. And how much, but like i said this is what is working for her. I am not a holistic dr at all. Here is the protocol she is taking, and it has been one week. She is seeing awesome results

flora-max (probiotic) 2 caps 2 x a day

colostrum-1 cap 2 x a day

permeability complex- 2 caps 2 x a day

Intestimax- 2 caps 2 x a day

fish multra - 2 caps 2 x a day

super cranactin 2 caps 2 x a day

min-inflamm 2 caps 3 x a day

 

when we walked into the office the first thing he asked her was if she suffered from strep throat a lot in her life. She definitely had. She had strep throat 13 times in one year, and ended up with it in her blood. He told us the anti-biotics they gave her have caused havoc in her bladder, and there is a lot more involved which I won't get into. Bottom line, we have to fix the lining of her bladder, that's what we are doing. Putting back all the good stuff missing to protect her bladder. I believe with my whole heart, this is the answer. I wish you could see how wonderful she looks, not to mention feels. She's a different child, and like I said it's been one week!

[CrabGrassAcres]

I wonder if uva ursi would help? I use it for bladder infections and it does really clear them up.

[Mother]

Thanks Mommadogs. That was an older thread I must have missed. (2005) It's strange that there seems to be no more about the situation though???? I have been on probiotics for some time now and have been consuming raw colustrum for many months. You can still buy cranactin but it contains not only the cranberry but vitamin C as well, both an irritant for IC. I can't seem to find anything that says otherwise. The others are also still available but interestingly enough most also contain ingredients that are counter to suggestions for IC. Hmmmm. Now I wonder if this young woman was having a placebo affect as it had only been one week. I sure wish there was more about her and how she fared in later months. I did however find a couple of places that I might be able to get the fishmax which doesn't seem to contain any citrus. That was a great find because of what you'd given, thanks.

 

CGA, Uva Ursi is definitely good for UI infections. I've used it in the past myself. It seems to have no affect on IC though, I've tried it. I assume it's because IC is not an infection. They really don't know WHAT it is but but most seem to believe it is some sort of auto-immune response. In my case it is a symptom added to many that have come after having Lyme disease many years ago. I'm assuming a type of Chronic Lyme. There are treatments out there for that, a bit controversial, very involved, and very very expensive which I can't afford. I've managed to handle most of the symptoms but the IC is a tough one.

 

I sure appreciate the time you are taking to try to help.

 

[CrabGrassAcres]

Have you tried dolomite?

[Mother]

No, I haven't CGA. I have wanted to try it as I know that calcium might afford some relief but I have only recently found it in a source that did not contain magnesium stearate which I'm intollerant of. Thanks for the mention. I should try it.

 

((((CGA))))

[CrabGrassAcres]

Hon, I hope you find some relief. I have a kidney malformation that predisposes me to infection starting from the kidney and spilling over into the bladder. Fighting one right now, but i think I caught it early enough this time not to get a rip snorting bladder infection too. I finally figured out that odd smelling perspiration DOES signal that I have a kidney infection. Next time I will start treatment the very first day I smell it and not wait till I can't breath from fluid buildup.

[Mother]

Kidney infections are NO fun. I'm surprised and pleased that you are in tune enough with your body to be able to smell the infection starting. Very few people realize that our bodies give us clues when something is wrong. Besides Uva Ursi do you use anything else for the problem?

 

Good luck with that infection.

 

 

[CrabGrassAcres]

If I don't catch it in time I have to take Cipro. One of the odd things about this is that I can have an infection brewing without it showing in my urine. It sometimes takes several tests before it is detected. In the meantime the docs think I'm imagining things. I had a great doc years and years ago who told me that my urine was intermittently clear, but the infection was still there. At different times I've been on antibiotics for many months at a stretch. I'd rather take the herb when I first get symptomatic since it doesn't affect anything except to disinfect the urinary tract.

 

This seems to be a genetic problem associated with congenital kyphosis. Several people in my family have it. One aunt was born with a kidney infection. Granny had such a bad infection carrying aunt Miriam that she was unable to care for the baby for some months after Miriam was born. The first really bad infection I had was when I was 3.

 

I've seen that I nearly always get hit with one within a few days of getting dehydrated. Sometimes I have a hard time drinking enough to keep up with the perspiration. I refuse to spend my life sitting in an air conditioned room. I just need to be more aware of what is going on.

[Mother]

I know that kyphosis can cause bladder and even bowel problems in some people. I knew someone else that had it. I believe there's surgery but it doesn't help everyone I understand. I can sympathize with you for the urinary problems. Cipro is one of the few antibiotics that I can handle yet.

 

Have you noticed how many of us on Mrs. S have health issues? I believe it's because that those of us with challenges feel a great need to be prepared knowing that all crisis come with higher stakes for us. What do you stock to use for infections in case antibiotics aren't available? I have been diagnosed with severe systemic candida BECAUSE of all the antibiotics I took when first diagnosed with Lyme Disease about fifteen years ago. Each course I take now makes me extremely ill, even garlic or echinacea. Anything that fights a bacteria in my body seems to also put the good bacteria off balance causing symptoms despite loading up on probiotics. I have learned that vigilance and avoidance are my best defenses but that isn't going to cut it during a SHTF situation. Even not being able to get enough water could have serious consequences for some of us. Knowing substitutes for what we normally take could mean life or death for many of us. Often it is not just one herb or one diet change. Sometimes it means knowing what 'regime' will substitute.

 

In my case and with my allergies and etc, I have been leaning more heavily on foraged foods so that I will know ahead of time which I can handle or not. I have learned how to harvest AND process those wild foods naturally just in case I might have to rely on them. I've been studying the wild medicinals as well and slowly establishing some of the plants closer to the house just in case. I've also been building a small reserve of wildcrafted medicinals in dried or tincture form just in case. I'm finding it a challenge as some of them are just as problematic or more so in dried form than in fresh, etc. Experimenting plays havock on my system but I'd rather have it do so now than during a crisis.

 

Perhaps it seems like a drastic scenario to play out for some but for those of us who depend on a special diet or medication it is a vitally important part of prepping.

 

[CrabGrassAcres]

I buy the Cipro from VetAmerica online. (I keep a stock in the freezer.) They have it as a fish med. I can't wait until a doc decides I need it or it takes MUCH longer to get it under control. The less time I have to take it, the better. They also want to always start with Bactrim, which is useless and upsets my stomach so badly I cannot keep it down, even when I take it on a full stomach. Cranberry juice also does nothing for me.

 

I react badly to many herbs too. I am super cautious about what I take. I want to try to grow the Uva Ursi as soon as I can get my garden started. Right now I have to buy it and I wonder sometimes how potent it is.

 

I've been feeling so much better over all with the new vitamin and mineral regime I've been on, that I think I realized the onset of symptoms with my kidneys sooner this time. Usually they just blend in with the general pain and discomfort I have had for years until it is so bad I finally realize something more than "my" normal is going on.

 

One of the main reasons I prep is that daughter is on such a restricted diet. We cannot just go to the grocery store and fill the cart with things she can eat. I found I cannot trust can/package labels to tell me exactly what is in there. I MUST buy only single ingredient items, and in their least refined state or produce them myself. Since many are not available locally I have to order in bulk. I cannot take a chance on the supply chain always working so I need several yrs of food stored, always. She also is non-verbal so I have to be very observant. Kind of like being a vet, I suppose.

 

Our bodies are so very complicated that it is a wonder any of us are healthy at all. Then you throw in our modern diet with all the vitamin and mineral deficiencies because of being grown on depleted soil, and wonder how anybody survives. I've been working to correct mineral deficiencies in my goats and it makes me think I probably have similar deficiencies. I'm hoping that once I get all that working right, the kidney infections will be a thing of the past.

[BooBoo]

two cents' re bladder infections

 

I had them incessantly for three years - like clockwork every 4 or 5 weeks, with no apparent cause (had tried several dietary changes etc)

 

But once we moved from the city and its treated water and got on to well water I didnt' have a singe episode. We were drinking well water and showering in well water. When we moved again (to a town with chlorinated water) I immediately got a bladder infection. Figured it HAD to be the chlorine (or something else in the water) Switched to bottled water - didn't make a difference...was still showering in treated water...Finally put in a new water softener with a charcoal filter and haven't had a bladder infection in over 4 years now.

Can't "prove" anything but that was my experience, maybe helpful to someone else

[sassenach]

I sort of glanced through all this.... I got lupus when I was about 19 but it wasnt diagnosed til I was about 32... fibro was there, it was not diagnosed til a few years later. I grew up drinking orange juice and eating navel oranges, tangerines and such for the vitamin C . I had some bladder infections through all this time.

More recently, I realize I haven't had one bladder infection in several years, after taking measures to remove Equal ( Aspartame), not eating oranges and buying other juices with Vitamin C in them instead of orange juice, although I do drink tang, because i can mix up an individual glass, instead of have half a gallon I wont drink fast enough anyway, by myself at home). I will document all the posts here because of the valuable info on alternatives. Thank you for the posts on such things! ( I do take Vit C tablets as often as I remember and these seem to do ok on my IT tract and bladder, so I will continue with that, as well as try to eat foods with it other than citrus. )

I tend to also just drink filtered water and use it in all my liquid based stuff now, and for cooking, and this may also help. I have also cut way down on the amount of coffee and drink hardly any soda at all anymore. Cutting out the acidic drinks may have been part of the betterment of my bladder. This has become preventative measures for myself that do seem to help in general. De-stressing, getting adequate sleep, they all seem to be making it less prevalent in my life these days. Along with many other things that are symptomatic of lupus, although it has had some serious affects on my heart, and the fibro is under much better control.

The only thing I have really added is anti-inflammatory supplements most recently, and that has an overall good affect. This can also aid in fighting flu viruses, not just arthritis type disorders. I did not get sick once this past spring and winter or last fall, and that is saying alot because I used to get sick frequently and have been exposed to others who have gotten all the usual stuff each season.

But I am glad that many of you have documented these other methods in dealing with such, but I do think that our essential diet can be ridden with things that can cause or exacerbate such problems, if we are prone to them and its simple things that can be done to reduce those factors. Things we may not have examined or even tried yet, too.