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  • What I know and suspect

    Hello my name is David aka GoldSeals.I have been diagnosed with ic.
    My opinion about ic is that this problem is in the kidneys.The kidneys excrete some unknown chemical that destroys the lining or mucus layer in the bladder.By disconnecting the ureters from the bladder for a period of about 2 weeks the bladder actually heals itself.Upon reconnecting the Ureters to the bladder the mucus layer disappears once again.Like I said its my opinion and the research has been done on this but not by me.My other theory is that xrays can destroy the bladder cells also.This can lead to a possible induced ic condition.So all you people that have been exposed to xrays may consider this a possibility.
    Regards,GoldSeals
    54 year old male
    Diagnosed with IC in 1994
    Had symptoms since 1992
    Three cystoscopies.One biopsy with hydrodistention.
    This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
    Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
    Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

  • #2

    Interesting theory. Thanks for sharing. Where did you find these particular studies?

    Comment


    • #3
      I've never heard of either of these theories. Can you tell us where this research is?
      *IC-- Summer 2004; PFD--October 2005
      *Fibro--Fall 2000; CFS-- Fall 2000
      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

      Total Abdominal Hysterectomy--adenomyosis--9\08

      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

      Comment


      • #4
        I've heard lots of theories.......I sure wish we could find out an exact cause so all of us could get well! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          I have never heard of these theories either. I woud like to read up on it.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Hi all,
            Im going to search for it again.Its been awhile.Ive been reading and researching about IC for quite sometime and I do remember there was a study on both theorys.
            Heres a link related to radiation induced cystitis.This wasnt the original article though.
            http://cancerres.aacrjournals.org/cg...full/60/4/1146

            http://kidney.niddk.nih.gov/kudiseas...itialcystitis/
            In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments





            GoldSeals
            Last edited by GoldSeals; 06-05-2007, 03:28 PM.
            54 year old male
            Diagnosed with IC in 1994
            Had symptoms since 1992
            Three cystoscopies.One biopsy with hydrodistention.
            This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
            Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
            Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

            Comment


            • #7
              toxic urine coming from Kidneys

              Still looking for the study.Its out there though.The actual study of disconnecting the ureters from the bladder and reconnecting them 2 weeks later with the bladder actually healing itself.The ureters where bypassed to the colon temporarally.
              Regards,GoldSeals
              54 year old male
              Diagnosed with IC in 1994
              Had symptoms since 1992
              Three cystoscopies.One biopsy with hydrodistention.
              This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
              Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
              Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

              Comment


              • #8
                I think anything is possible, but I still believe it boils down to IC being autoimmune in nature. I think it is our autoimmune systems that are allowing this to happen, ( our bodies attacking themselves).
                What you come up with is very interesting though, and is very possible, but again, I think it all is a result of the autoimmune system that is not functioning correctly. That is just my opinion.
                Jen

                Comment


                • #9
                  Body Overload

                  I think the body finally just gets overloaded with too many toxic chemicals which we ingest from food over a long period of time. How many people do you know that drink numerous Cokes a day, snack on chemical stew of Fritos and so on? When the body undergoes changes such as hormonal, surgery or what ever, the added trauma gets to be too much and it starts to break down. The bladder is just a reservoir. I think thats why anti histamines work so well for a lot of ICers because the body produces histamines as a result of inflammations. Thats why diet can be so effective in helping IC symptoms, it limits the junk, and puts less stress on the digestive system.
                  Surgery, infections such as chronic yeast and UTI's, cause nerve damage and pelvic floor disorders, low back issues also pinch nerves. When nerves are pinched they lose their blood supply, and begin to spasm. Hence, nerve pain that is shooting, spasming, tingling, burning. When hormonal levels start to fail all of this gets more intense.
                  Everyones body responds to different thresholds of ability to fight off toxins, and everyones body metabolizes food differently.
                  Just my musings.

                  Sammi

                  Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                  Diagnosis: IC, PFD (both in remission)

                  Comment


                  • #10
                    To be honest, I never drink soda ( never liked it), and I have never really ate unhealthy. Sure I have snacks occasionally, but within moderation.
                    I believe that diet plays a big part in our health, yes, but I do not think it has anything to do with getting IC, otherwise there would be ALOT more people with it.
                    Now surgery and medications are a whole different story and I do believe that these things can damage things and cause issues. The reason I think IC is autoimmune in nature is because our immune systems are what basically control everything and how our body functions. If there becomes a weakness or a glitch in the immune system, then that is when things do not work like they should.
                    Also, most people with IC have multiple things going on, not just IC, and that is why I feel it to be a whold body issue, not just a bladder issue. Now only if the doctors and researchers could find out why and a cure, that would be great.
                    Jen

                    Comment


                    • #11
                      So what is the baseline question?

                      What causes the autoimmune or allergic response? Is it genetic, is it environmental? Is it both? Why and how do people develop allergies?
                      It appears to me to be a combination of a genetic weakness with certain body systems, then an overload of environmental experiences (diet, chemicals, surgery, traumas) that trigger a body response in a body system.
                      When the word diet comes up, dont think food, think chemical stew. How the body will process these chemicals is individual based on each persons body chemistry.
                      It is amazing how much research is being done on the ingestion of certain natural chemicals and the effect on certain illness. For example at the Mayo Clinic they are researching high intake of Selenium, Vitamin E, reduction of saturated fat and their relationship to prostate cancer? My husbands Onocologist has developed a combination pill containing various anti oxidants which he is very excited about and has seen some interesting and hopeful results with. The Gerson Clinic which was famous for curing some types of cancer had very strick regimented schedule of diet and juicing.
                      I was cured of Endometriosis which was considered incurable, by a Macrobiotic diet which was essentially just limiting intake of all animal products, eating a large amount of green, and yellow vegetables. This very restrictive diet cured the Endometriosis. When I had my recent Hyster there was no evidence of active Endo, but evidence in the form of dried up scar tissue that it had been there.
                      Look at the research on heart disease. If you are not born with defect, much of Western heart disease is the result of environmental habits, food choices and the way the body process this, lack of exercise, lack of ingestion of things that keep the arteries open (vitamins C, Prolene, B-vitamins, adequate amino acids).
                      Once a body has developed a full blown disease it is very hard to reverse the damage. If the immune system is not totally shot its possible and happens all the time. If the body is still under the stresses that developed the breakdown in the first place, then it is hard or impossible to stop the out of control spiral.

                      Sammi

                      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                      Diagnosis: IC, PFD (both in remission)

                      Comment


                      • #12
                        Golden seal,
                        If the bladder heals when the uteres are disconnected, then does it automatically get damaged when they are reconnected? I personally think my IC happened over about 5 years, but I didn't know until the lining was gone. What a wonderful thing this would be even if I had to have surgery every few years. Can you live a normal life while they are disconnected? I really would like to know more!!!

                        Comment


                        • #13
                          Originally posted by ABliske View Post
                          Golden seal,
                          If the bladder heals when the uteres are disconnected, then does it automatically get damaged when they are reconnected? I personally think my IC happened over about 5 years, but I didn't know until the lining was gone. What a wonderful thing this would be even if I had to have surgery every few years. Can you live a normal life while they are disconnected? I really would like to know more!!!
                          Yep,But I havent been able to find the original article yet.But I know I read it on another website and theres tons of other stuff to read through.Eventually Ill find it.
                          Of course the ureters being disconnected from the bladder could just be preventing the acid from the urine doing further damage.There was a study suggesting there was a toxin in the urine preventing the bladder from healing and by the reconnnecting the ureters the problem ic came back again.Wouldnt it be nice if we had a valve to devert the urine elsewhere for a couple of weeks till the bladders healed on its own.
                          GoldSeals
                          54 year old male
                          Diagnosed with IC in 1994
                          Had symptoms since 1992
                          Three cystoscopies.One biopsy with hydrodistention.
                          This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                          Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                          Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                          Comment


                          • #14
                            Hi Sammi.
                            Yes, you have alot of good points there. I agree with what you are saying. I think it is great that the diet helped your endo. Are you still on that diet? I also think that what will work for one, it may not work for the other, and I think it really all depends on the persons genetic makeup as well. I do think my autoimmune issues are somehow genetic, not saying my mom or dad had an autoimmune issue, but probably someone in my family , maybe even great ancestors had one and that predisposed me to having these issues or the gene was passed to me.
                            ALso, viruses can damage the immune system as well and this could also be why I am so sick with all this stuff. They have not really come up with much in terms of curing autoimmune diseases. They have meds that can help, like immunosupressants, or prednisone, but these are not suppose to be taken any length of time because of the serious side effects they have. I have had two frineds pass away from autoimmune disease. One had lupus, and the other scleroderma.
                            It is pretty scary. Maybe one day they will come up with a cure for these things. I also agree with you about the allery issues. I think most people who have any type of autoimmune disorder also has alot of chemical sensitivities, I know I do. I have become allergic to ALOT of meds since getting sick 5 years ago. I seem to be sensitive to alot of things. ANyow, I pray that they will come up with something to help with these issues one day soon.
                            Jen

                            Comment


                            • #15
                              Common Link needs to be found

                              Originally posted by sami4 View Post
                              I think the body finally just gets overloaded with too many toxic chemicals which we ingest from food over a long period of time. How many people do you know that drink numerous Cokes a day, snack on chemical stew of Fritos and so on? When the body undergoes changes such as hormonal, surgery or what ever, the added trauma gets to be too much and it starts to break down. The bladder is just a reservoir. I think thats why anti histamines work so well for a lot of ICers because the body produces histamines as a result of inflammations. Thats why diet can be so effective in helping IC symptoms, it limits the junk, and puts less stress on the digestive system.
                              Surgery, infections such as chronic yeast and UTI's, cause nerve damage and pelvic floor disorders, low back issues also pinch nerves. When nerves are pinched they lose their blood supply, and begin to spasm. Hence, nerve pain that is shooting, spasming, tingling, burning. When hormonal levels start to fail all of this gets more intense.
                              Everyones body responds to different thresholds of ability to fight off toxins, and everyones body metabolizes food differently.
                              Just my musings.
                              Until there is a common link found to everyone that has ic it will be difficult to find a cure.
                              GoldSeals
                              54 year old male
                              Diagnosed with IC in 1994
                              Had symptoms since 1992
                              Three cystoscopies.One biopsy with hydrodistention.
                              This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                              Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                              Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                              Comment

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